Patient guide: head and neck lymphedema following cancer treatment
By: Lindsay Davey, MScPT, MSc, CDTMarch 27, 2018
Editors: Ryan Davey, PhD and Lindsay Davey, MScPT, MSc, CDT
Head and neck lymphedema is a very common side effect of head and neck cancer treatment. It is a chronic condition with potentially severe implications for quality of life. In my own experience as a physiotherapist and Combined Decongestive Therapist who has treated patients with various types and stages of lymphedema over the past decade, head and neck lymphedema patients can be among the most heavily impacted by their condition.
Unfortunately, general knowledge of the disease is poor and clinical studies remain sparse. In this article I will offer you an overview of our current clinical understanding of the condition, along with the accepted best practices for managing it.
Want to know how your experience compares to that of other patients? Check out: “Is my head and neck lymphedema ‘normal’?”
Part 1. Clinical characteristics of head and neck lymphedema
What is lymphedema?
Lymphedema is a chronic swelling condition caused by damage to the lymphatic system (“secondary lymphedema) or malformation of the lymphatic system (“primary lymphedema”). Disrupting normal function of the lymphatic system in an area of the body results in insufficient clearance of lymphatic fluid (lymph) from that area. When blood transports oxygen and nutrients to the cells of the body and collects waste products for excretion, 80% of the fluid returns to the bloodstream while 20% enters the lymphatic system as lymph, a colourless fluid constituting this left over volume. The lymph eventually makes its way back into the blood stream at the heart.
More than just a fluid collection system, the lymphatic system is a vital component of the immune system, transporting immune cells around the body. Consequently, blockage of lymph flow causes a build up of fluid as well as other harmful changes including localized immune depression. Lymphedema is typically observed in the extremities (arms and legs), but is also very common in persons treated for head and neck cancer. Learn more about lymphedema here.
What is head and neck lymphedema and how is it caused?
Secondary lymphedema of the head and neck typically arises as a result of damage to the local lymphatic system during cancer biopsy or treatment (see Fig.1 for an illustration of some of the lymph nodes and vessels of the head and neck). Removal of lymph nodes during cancer biopsy or tumour resection is the primary cause of secondary lymphedema in head and neck cancer patients. This is a direct consequence of the essential role played by lymph nodes in collecting lymph fluid from smaller lymphatic vessels and draining it into larger vessels leading back to the heart.
Radiation therapy can also cause damage to any remaining lymph nodes and lymphatic vessels located in the radiation field, another potential cause of lymphedema. Unfortunately the extensive number of nodes in the head and neck makes radiation induced damage more difficult to avoid. Obstruction of normal lymphatic flow in the head and neck results in a build up of lymphatic fluid, and subsequently a chronic and progressive swelling that can affect various areas of the head, neck, and face.
Figure 1. Superficial lymph glands (nodes) and lymphatic vessels of head and neck (ref. 1).
As with lymphedema of the arm or leg, head and neck lymphedema should be caught and treated early to relieve symptoms and prevent or delay disease progression.
Unmanaged swelling causes additional damage by overtaxing the remaining normal lymphatics, and initiates a cascade of deleterious events including localized inflammation, immune system impairment, and eventually a hardening of the swelling (which is called “non-pitting lymphedema”), further exacerbating the issue.
Hardening is the outcome of compositional changes that occur in the tissue including fibrosis (scarring), connective tissue proliferation, and the accumulation of fat (and to a lesser extent muscle and bone) – a possible result of altered stem cell behaviour. This advanced stage of the disease is less responsive to typical treatments, and may instead require surgical intervention (see more below).
What are the symptoms of head and neck lymphedema?
The primary symptom of head and neck lymphedema is swelling that typically develops 2-6 months after cancer treatment. During the early stages of head and neck lymphedema swelling may be difficult to observe. Head and neck lymphedema can develop internally in the larynx and pharynx (which constitutes various structures that comprise the mouth and throat), or externally in the neck and face, or a combination of both, depending on which lymphatic channels are obstructed.
Less frequently, swelling can progress to the point where it creates serious functional problems such as difficulty breathing and swallowing, as well as the obvious body image concerns and associated social withdrawal arising from deformation of the neck and face (ref. 2). Overall, head and neck lymphedema has the potential to severely degrade the quality of life of affected individuals. To see how your symptoms compare to a group of 1202 patients treated for head and neck cancer at the MD Anderson Cancer Center (MDACC) in Texas, check out our post: “Is my head and neck lymphedema ‘normal’?“.
Symptoms of mild to moderate head and neck lymphedema may include:
- Visible swelling under the chin, in the neck, or in the face including eyes and lips.
- A feeling of tightness or restricted movement in these areas, including the jaw or shoulders.
Symptoms of moderate to severe head and neck lymphedema may include:
- Pronounced swelling in the face and neck
- Swelling feels hard and solid to the touch
- Visual or auditory impairment
- Difficulty breathing, swallowing, eating or speaking
- Nasal congestion, chronic ear ache
How is head and neck lymphedema diagnosed?
Lymphoscintigraphy or other imaging techniques involving the injection of contrast agents to visualize lymphatic fluid flow abnormalities can lead to a definitive diagnosis of lymphedema, but it is commonly diagnosed using less evasive means. The presence of lymphedema is typically assessed based on observational findings from a physical examination, patient symptoms, and a review of patient history. Ruling out alternative causes of swelling is necessary. Accordingly, early stages of the disease can be especially difficult to diagnose.
Subjective findings from the patient (such as feelings of ‘tightness’ or ‘heaviness’) are often the earliest indicators, whereas objective measurements of volume changes can be more difficult to obtain. This is particularly true for early internal lymphedema, and early external lymphedema in areas such as under the chin where there is no symmetrical counterpart that can be used for comparison (unlike for example swelling on one side of the face that can be compared to the other unaffected side).
External lymphedema is often classified according to one of the four common scales. However, standardization is lacking, and these scales appear to be imperfectly suited to capturing the stages of head and neck lymphedema (ref. 3).
A modification of Foldi’s scale for categorizing external lymphedema does a good job at capturing the range of soft-tissue changes observed during progression of untreated head and neck lymphedema (see Table 1), although further validation of the scale is warranted (ref. 4).
Table 1: Modified Foldi scale for rating head and neck lymphedema
Practically speaking, head and neck lymphedema secondary to cancer treatment can be defined as swelling that develops three or more months following treatment (ref. 5). This is beyond the time that normal acute post-treatment swelling is typically seen.
External lymphedema is identifiable by a visible swelling of the face or neck, and can be best quantified using a “composite facial score” comprised of seven measurements, as well as a “composite neck score” comprised of 3 measurements (ref. 4). Measurements are necessary to establish a baseline, monitor changes and track improvement.
In contrast, internal lymphedema is identified by a visible swelling in the mucosa and soft tissue of the pharynx and larynx. Internal lymphedema is more difficult to quantify. Endoscopy or mirror examination by an experienced practitioner can be used to measure 11 internal anatomical sites and two spaces according to the Patterson’s scale (ref. 5).
Risk factors for head and neck lymphedema following cancer treatment
Fundamentally, the risk of lymphedema increases as a function of lymphatic damage. Possibly the best single predictor of likelihood is the number of lymph nodes that were removed during surgery; the more nodes removed, the greater the chance of developing head and neck lymphedema. Studies of head and neck lymphedema suggest that total dose of radiation therapy as well as number of days of radiation also increases your risk of developing lymphedema (ref. 6).
In addition to the number of lymph nodes removed, additional factors may modify your chances of developing head and neck lymphedema. Studies of arm lymphedema secondary to breast cancer suggest that the chance of lymphedema increases for patients who:
- Have received chemotherapy before or after surgery (ref. 7),
- Have high body mass index (BMI)
- Have genetic factors associated with lymphedema
- Report lower overall health scores (ref. 7)
It is possible that these same risk modifiers may apply to head and neck lymphedema following cancer treatment. Thankfully, there is also research to suggest that there are steps you can take that may help reduce your risk of developing lymphedema (read below).
Prevalence of head and neck lymphedema following cancer treatment
Head and neck cancer makes up only 3-5% of all cancers (ref. 4), but within this population the incidence of head and neck lymphedema is considerable. It is commonly reported that the incidence of head and neck lymphedema following treatment for head and neck cancer is around 50%. This figure appears to be derived from four European studies that suggested between 12 to 54% of patients with head and neck cancer will go on to develop lymphedema as a side effect (ref. 8-11).
Recent research suggests that these earlier studies may actually underestimate the real prevalence of head and neck lymphedema because they did not comprehensively assess both internal and external lymphedema (ref. 5).
A larger and more comprehensive study of both internal and external lymphedema suggests that the prevalence of head and neck lymphedema following cancer treatment may be an alarming 75.3% (61 of the 81 study participants) (ref. 5). This included: 9.8% with external lymphedema only, 39.4% with internal lymphedema only, and 50.8% with combined external and internal lymphedema. This more comprehensive study was still limited by a non-robust study design (it was not a prospective study where patients were followed over time), and was performed on primarily a Caucasian population at a single large cancer center in the United States.
Part 2. Prevention and treatment of secondary lymphedema of the head and neck
Prevention and self-management of head and neck lymphedema following cancer treatment
Damage to lymphatic nodes and vessels causes a predisposition to developing lymphedema. However, many individuals with lymphatic damage do not go on to develop lymphedema, and many more develop only mild lymphedema or enjoy many years without occurrence.
Prevention of lymphedema onset and minimization of its effects can be helped by reducing lymphatic stressors. In one study it was reported that early intervention could restrict mild lymphedema (of the arm) to low levels for at least 10 years (which was the full length of the study), and likely longer (ref. 12).
Head and neck lymphedema prevention and management strategies:
- Reduce the risk of injury and infection to your head and neck. Injury and infection causes local inflammation which increases lymphatic load in the area. This includes: sunburns and other burns; bites and scratches from insects and animals; bruises and injuries; and cuts, including inside the mouth. With respect to personal grooming, precautions should be taken to avoid breaking the skin barrier. Men should consider switching to an electric razor rather than razor blade, and women should be careful with waxing and electrolysis. All cuts should be washed, treated with an antibiotic ointment, and monitored for infection. Signs of infection should be investigated by a physician as quickly as possible and will likely be treated with antibiotics.
- Consider wearing a compression garment. Compression garments are a central component of Combined Decongestive Therapy (CDT), the gold standard conservative treatment for lymphedema (more on this below). Compression garments should be recommended during the period immediately following head and neck cancer treatment (especially if lymph nodes were removed or irradiated), as well as following cosmetic liposuction of the neck and chin. Use of compression immediately following surgery can help reduce temporary post-surgical swelling and improve aesthetic outcomes. It may also help prevent transient swelling from becoming chronic. For patients with established lymphedema, regular use of compression garments can help prevent the condition from worsening. Keep in mind that compression garments can only benefit the tissues that they compress and offer no benefit for swelling in inaccessible areas such as at the back of the throat.
- Self-prescription of compression garments is not optimal. You may benefit most from a certain level of compression, a specific style, or only after swelling volume reduction using manual lymphatic drainage. A CDT therapist will be able to best advise you on which garment would be best for you (if any), as well as when and how often to wear it. However, if you have difficulty accessing care, wish to be proactive, or have recently had surgery, you may consider purchasing a generic and relatively inexpensive compression garment such as the Jobst Facioplasty. Size small is a common size for this particular garment, fitting people with a crown to chin circumferences of under 25 inches. [Small disclaimer: if you purchase an item through this link we may receive a very small fee which we use to help support our blog. But feel free to look around for a garment that suits you best, better yet, ask a local CDT therapist for personalized advice before purchasing a garment.]
- If you do wear compression, wash it every one or two days, by hand, to help it maintain its shape and elasticity. Discontinue use immediately if it causes pain, friction or discomfort, if you experience skin sensitivity or show signs of infection, or if you experience an increase in swelling anywhere in the area.
- Exercise regularly following the guidelines provided by your CDT therapist to help aid lymph drainage.
- Maintain a healthy body weight.
- Ensure ergonomic sitting positions (particularly when using a computer, for example) to reduce tightening of the neck and shoulder muscles and ensure optimal lymphatic flow through this critical area. Maintain low stress levels which can cause tightening in these muscles as well.
- Try sleeping with your upper body slightly raised. You may experience worse symptoms in the morning, which subside after being upright and active. Gravity appears to assist in lymph drainage of the head and neck, which is in contrast with lymphedema of a limb, where symptoms more often worsen with time spent upright.
- Moisturize skin to prevent drying.
- Wear loose clothing. Do not wear clothing or jewelry that is constrictive around the neck.
Basic manual lymphatic drainage massage techniques can be learned by the patient and performed at home. Here I demonstrate a basic series performed at the neck:
Professional management of head and neck lymphedema following cancer treatment
The gold standard treatment
The gold standard treatment for lymphedema is complete (or ‘combined’) decongestive therapy (CDT). CDT is provided by certified therapists, and includes manual lymphatic drainage, compression (bandages / garments), exercise program development, and education on skin care and infection precautions. Patient education should also include self-massage guidance, and flare-up prevention practices. Learn more about CDT here. Standard CDT practices may need to be modified to optimally treat this population, in particular compression which can be especially difficult in this region.
Seeking guidance and care from a CDT therapist should be done as soon as symptoms present. It has been suggested that CDT is most effective for early and milder cases of lymphedema (in this case for breast cancer related lymphedema) and as mentioned above, early intervention in the disease process may help limit lymphedema to low levels for an extended period of time.
Preferably, head and neck cancer patients should meet with a CDT therapist pre-emptively, before symptoms are present. Judicious adherence to preventative strategies combined with self-management guidance including exercise and self-massage may prevent the onset of lymphedema. CDT therapists should be able to offer this guidance in a single session, before, during, or after cancer therapy.
Surgical options
For advanced cases of lymphedema where head and neck swelling is extensive (ie the hardening process has occurred), CDT therapy may be less effective, and in some cases insufficient to adequately alleviate symptoms. Given the potentially severe consequences of unmanaged swelling in the face and neck (including difficulty breathing, swallowing, speaking, etc.), patients with advanced head and neck lymphedema should be closely monitored by their physician, and surgical intervention should be considered if feasible and necessary.
While there is currently no surgical solution for lymphatic insufficiency, a variety of surgical procedures have shown some benefit for relieving swelling and improving lymphatic function. Surgical options (if available in your area) may include liposuction (see: “Liposuction for Head and Neck Lymphedema – Does it Work? For Which Patients?“) to remove accumulated lymph and adipose tissue (ref. 13) or lymphaticovenous anastomosis (see: “Lymphatic Reconstructive Surgery for Lymphedema: No Cure Yet“)(ref. 14) where non-draining lymphatic vessels are surgically connected to adjacent veins to provide an alternative route for lymph drainage.
Pharmaceuticals and supplements
There are currently no medications or dietary supplements available to treat head and neck lymphedema. Given that lymphedema is caused by a mechanical disruption of normal lymphatic function, pharmacological ‘cures’ are not yet available – and will likely require significant medical advancements toward ‘regenerative’ medicine before they are.
However, other factors in addition to the mechanical issue can also contribute to the symptoms of head and neck lymphedema – such as inflammation – which may be interesting targets to help symptom management in some people.
If you search google you may find mention of a variety of supplements or compounds that some people believe may help reduce the symptoms of lymphedema. Unfortunately these are not yet supported by clinical research (and may never be), and so they are not included in recommended clinical management guidelines.
Three of the more interesting experimental compounds for treating the symptoms of lymphedema are: selenium (sodium selenite), Pletal (aka cilostazol) and Ubenimex (aka bestatin).
Here’s what we know so far about these experimental compounds and how they might improve the symptoms of lymphedema:
- Selenium is an essential mineral found in our bodies and in the food we eat. Based on our review of the clinic data, we find the use of selenium for lymphedema to be controversial, impractical, and potentially unsafe.
- Pletal is an FDA approved drug that can help decrease muscle pain in intermittent claudication. It has been shown to promote growth of lymphatic cells in mice and in human lymphatic cells grown in a laboratory, so it could potentially promote lymphatic repair in lymphedema. Could cilostazol be a treatment for lymphedema? We don’t yet know. Clinical trials are lacking, and any potential benefits must be weighed against the significant side effects of taking this drug.
- The cancer drug Ubenimex could be more interesting, and is currently approved in Japan as a cancer treatment. Ubenimex is a potent inhibitor of a particular inflammatory pathway that was recently shown to be involved in lymphedema development in an experimental mouse model of lymphedema. As far as I am aware, Ubenimex is the only drug candidate that is currently undergoing clinical trials (the ‘ULTRA’ trial) sponsored by a pharmaceutical company. It is an early clinical study of efficacy and safety in patients with secondary lymphedema of the leg. We recently examined the data behind this drug to help better understand how Ubenimex might help patients with lymphedema.
Comments or Questions?
If you have any comments or questions, please feel to share or ask below! As you know, the lymphedema community is small (and the head and neck lymphedema community is obviously even smaller), so sharing your experiences or tips could help others. We have many people visiting this page each day, so your efforts will not go unnoticed. “Sharing is caring” :)
Want to know more about how your experience compares to other patients? Check out our article: “Is my head and neck lymphedema ‘normal’?”
References
- Gray’s Anatomy illustration: http://www.bartleby.com/107/illus602.html.
- Deng J., Murphy B.A., et al. Impact of secondary lymphedema after head and neck cancer treatment on symptoms, functional status, and quality of life. Head Neck. 2013 Jul; 35(7): 1026-35. http://doi.org/10.1002/hed.23084
- Deng J. Ridner S.H. et al. Assessment of external lymphedema in patients with head and neck cancer: a comparison of four scales. Oncol Nurs Forum. 2013 Sep: 40(5): 501-6. abstract
- Smith B.G. and Lewin J.S. The role of Lymphedema management in head and neck cancer. Curr Opin Otolaryngol Head Neck Surg. 2010 Jun; 18(3): 153-8. link to article
- Deng J. Ridner S.H. et al. Prevalence of secondary lymphedema in patients with head and neck cancer. J Pain Symptom Manage. 2012 Feb; 43(2): 244-52. https://doi.org/10.1016/j.jpainsymman.2011.03.019
- Deng J. Ridner S.H. et al. Factors associated with external and internal lymphedema in patients with head-and-neck cancer. Int J Radiat Oncol Biol Phys. 2012 Nov1; 84(3). https://doi.org/10.1016/j.ijrobp.2012.04.013
- Miaskowski C., Dodd M., et al. Lymphatic and Angiogenic Candidate Genes Predict the Development of Secondary Lymphedema following Breast Cancer Surgery. PLoS One. 2013 Apr 16;8(4). https://doi.org/10.1371/journal.pone.0060164
- Dietz A., Rudat V., et al. Chronic laryngeal edema as a late reaction to radiochemotherapy. [in German]. HNO. 1998; 46: 731-38. abstract
- Buntzel J., Glatzel M., et al. Influence of amifostine on late radiation toxicity in head and neck cancer follow-up study. Anticancer Res. 2007; 27: 1953-56. http://ar.iiarjournals.org/content/27/4A/1953.long
- Schiefke F., Akdemir M., et al. Function, postoperative morbidity, and quality of life after cervical sentinel node biopsy and after selective neck dissection. Head Neck. 2009; 31:503-12. https://doi.org/10.1002/hed.21001
- Wolff H.A., Overbeck T., et al. Toxicity of daily low dose cisplatin in radiochemotherapy for locally advanced head and neck cancer. J CancerRes Clin Oncol. 2009; 135:961-67. http://doi.org/10.1007/s00432-008-0532-x
- Johansson K, Branje E. Arm lymphoedema in a cohort of breast cancer survivors 10 years after diagnosis. Acta Oncol. 2010; 49(2):166-73. https://doi.org/10.3109/02841860903483676
- Taylor S.M., Brake, M. Liposuction for the management of submental lymphedema in the head and neck cancer patient. Otolaryngol Head Neck Surg. 2012 Jun: 146(6): 1028-30. https://doi.org/10.1177/0194599812438337
- Mihara M., Uchida G., et al. Lymphaticovenous anastomosis for facial lymphoedema after multiple courses of therapy for head-and-neck cancer. J Plast Reconstr Aest Surg. 2011 Sep; 64(9): 1221-5. https://doi.org/10.1016/j.bjps.2011.01.006
I suffer from severe head and neck lymphedema. It has affected my hearing, swallowing, breathing and speaking. The hardening process has started over a year ago and is become worse all the time. I recently went for physiotherapy and to avail. In 2012, I had 26 lymph nodes removed from my neck after having received 35 radiation treatments, 2 treatments of cysplatin and 1 of carboplatin. I would like to know if there is any danger if left untreated.
Hello Denise,
I’m so very sorry to hear of your on-going lymphedema challenges and that you are finding it is becoming more and more fibrotic (hardening). I would guess that the lymphedema, as well as the scar tissue from the surgical resection and the radiation damage to your head/neck tissues, are all contributing to your functional difficulties in terms of hearing, swallowing, breathing and speaking. I do hope that your physician is aware of the effects you are experiencing Denise, and that they are pursuing things with you as best they can. We do have success treating lymphedema of this type, with a combination of manual lymphatic drainage (MLD) massage, compression (there are types that are designed for head and neck cancer patients with head/neck/facial swellings), and self-care strategies. Releasing adhesions/scar tissue that is the of your surgery or the radiation is also something we work on with priority, since adherent tissue can create further blockages in terms of lymphatic fluid flow, thus confounding the condition further. Lymphedema, as you are unfortunately experiencing first hand, does tend to accumulate more and more fluid in the tissues over time if left untreated, and the process of fibrosis also does tend to become more advanced with time. I would say that if you are experiencing difficulties in the areas you have mentioned, that I would ensure that you are seeking assistance from a therapist certified in Combined Decongestive Therapy/MLD, who could arguably offer you hands-on drainage and tissue release, show you the home exercises you can do for yourself, and connect you with a certified Fitter for the compression garment piece. I would also advise you speak to your physician about the possibility of consulting with a speech language pathologist or ENT specialist, given the other functional issues you are dealing with. Wishing you the very best Denise, most sincerely.
My brother had surgery for throat cancer about 10 years ago. He had a tumor removed from his neck, which was squamous cell carcinoma. He then followed with several radiation treatments. About 2 yrs ago, he lost all bottom teeth. Now has swelling around jaw and chin. He has trouble talking and swallowing. His Esophagus doesn’t open quick enough, therefore food goes down his windpipe and he starts chocking. Unfortunately, the next step will probably be a feeding tube. He has gone to therapy with no success. He also does exercises with a band on his head. Is there anything else that can be done for this poor man? He is really scared!
Hello Barb,
My heart goes out to your brother, I’m so sorry to hear of such on-going challenges stemming from his cancer treatment so many years ago. I wish I could suggest that lymphatic drainage massage could offer much of a solution to him, but I gather given the removal of tissue at the time of his tumour resection, the radiation, and the loss of teeth since then, he is grappling with structural changes in his mouth and jaw, as well as related muscular atrophy. Use of the speaking, chewing, and swallowing musculature is important to promote lymphatic flow in the area that he has swelling, so I’m glad to hear that he is doing resisted exercises to promote maintenance of these muscles. A speech language pathologist is presumably part of his health care team, but they are incredible experts on re-training these particular muscle groups. Should he be in the city of Toronto (or surrounding area), I could recommend an excellent voice SLP who might be able to suggest additional exercises to promote better speaking ability, swallowing, and so on. The self massage strokes shown on our website’s video on the Lymphedema page could provide some relief from any lymphedema that may be present in his jaw and chin, and there are compression devices that are made for the head/neck/face that could be prescribed as well. A CDT therapist or his physician team members could prescribe such a device, and then a Certified Fitter would be the best person to facilitate getting the right garment suited to him. I hope this has been somewhat helpful Barb, please don’t hesitate to email me if you have additional questions, particularly if your brother is anywhere near the city of Toronto, as I could offer more specific referral recommendations. Warmest regards,
Lindsay Davey
I am a larenjectomy, whose operation took place October 2012. They took all my lympnodes, 70 % of my tongue, and I am unable to open my mouth large enough for them to put implants, I lost my teeth through radiation. This stiffness is almost unbearable at times. I have steadily lost my ability to swallow, I do have a peg feed
And doubt that I will ever loose this, given my history of inability to swallow.
Is there anything that I can do to lessen the stiffness. It takes a few hours in the morning to get to where I can swallow the thinness of liquid, by end of most days I can swallow a bit better, only to end up having to go to bed and get up the next am to start this process all over again.
I have gone to a therapist, only to find they are extremely robust in there massages and end off more stiff than before. My Dr is going to try a stretch of my esophagus
He said they would be less aggressive because the last time they tried, my esophagus swoll up and closed off.
Any suggestions I could try at home at this stage
Thanks
Dear Dianne,
My sincere apologies for the delay in my response. I can’t tell you how sorry I am to hear your story and the on-going difficulty you are having with your ability to swallow, and the profound stiffness in your jaw/mouth. With such extensive lymph node removal, I presume you have throat/facial swelling as well, which may have become part of the reason for the stiffness (lymphedema swelling can become fibrotic over time). If this is the case, then my first recommendation would be to follow along with the video that is posted on the Lymphedema page (under Services) on our website. The self-massage strokes demonstrated are designed to optimize lymphatic flow particularly locally in the area of the head and neck. Given the extent to which you have stiffness and discomfort, I think would be an excellent place to start, to try to ‘mobilize’ the tissue here, in a gentle and do-it-yourself manner. This could be done throughout the day, but especially in the morning to try to get things moving better for you at the start of your day. Swallowing exercises and therapy specifically for this function (particularly in light of the marked stiffness and tongue resection that you have had) are unfortunately not in my scope or know-how. Rather, I would recommend you seek out a speech-language pathologist (SLP) to learn these techniques/exercises (if you haven’t already been referred). There are some taping techniques that work well for people with lymphedema in the face/neck, and particularly if areas of ‘hardness’ of the tissue is present, so if there is a CDT therapist nearby to where you are, they would be an excellent resource for you. A CDT therapist is someone certified in Combined Decongestive Therapy, who would know how to provide hands-on tips (drainage massage, tissue softening massage, taping techniques, and so on, as indicated) with respect to the aspects of your condition that are attributable to lymphedema. I so very much wish that I had more to offer you Dianne. Please don’t hesitate to email me should you wish to discuss things further, or if I can be of further help. Wishing you the very best with your esophageal procedure and I hope at least the self-massage video is helpful. Sincerely, Lindsay Davey
Hello. I just had an excisional cervical biopsy for TB and sarcoidosis diagnosis 4 days ago. I have a swelling around the site, which also feels numb. I have an appointment with the surgeon only in a few days. Should I prepone it?
Thanks
Jane
Hello Jane,
I’m sorry to hear of your recent diagnosis and wish I was more experienced in the clinical presentation of sarcoidosis to be able to comment. Certainly I would expect that it is not unusual for a biopsy of this nature to involve some degree of swelling and numbness in the local area. A follow-up appointment in a few days seems reasonable to me, if some swelling and numbness are your only symptoms at this time. However, we always educate patients who have had any kind of surgical intervention (even if only a biopsy), that if they feel there are experiencing any signs or symptoms of infection (redness, heat, marked swelling, a feeling of general malaise, fever, etc), you should contact your physician immediately. I wish I could weigh in further Jane. If there is any doubt, of course, I recommend you consult with your medical team members ahead of your scheduled appointment. Wishing you the very best of luck, Lindsay Davey
Wonderful Article & Posts; please suscribe me to your posts.
You have a wonderful ability to communicate about this area of difficulty. I am 2 months out from completing my chemo (8) and radiation(40) for tonsil cancer. Right Tonsillar T2 N2cMO p-16+ squamous cell carcinoma. Within the last two weeks I have just developed noticeable swelling in the neck area only; so far that has just moved from an invisible to a visible state and has become quite puffy below the chin.
I will be contacting my ENT after reading your article and will see both the radiation and Chemo Doctors in the next week. Thank you for the important work that you do and for your knowledge which is so helpful and comforting to get some helpful direction! May God continue to bless you!
Hello Del,
Thank you for your comments, and I’m so very pleased to hear that the information on lymphedema was helpful and informative. I think it’s a great idea to counsel your radiation oncologist and medical oncologist this week, bringing their attention to the newly onset (now visible) swelling. I trust you will be very pleasantly surprised by the effectiveness of CDT/manual lymphatic drainage treatment from a therapist with expertise in this area, in addition to the the useful techniques they will teach you that you can perform on yourself, for optimal and speedy management. All the best of luck Del! Warmly, Lindsay Davey
Hi Lindsay, my situation is identical to the last person to post. Even the time frame. Neck only swollen. Would your video on YouTube help with this.
Hello Steve,
Thank you for your comment and yes, if you are in the same position as the individual who posted last, the self massage strokes would help with your neck swelling. Additionally, if you have any radiation tissue effects (fibrosis, adhesions), it will typically help with this as well. Naturally, it is difficult to provide specific advice without seeing you in person, so I always recommend you speaking with a Certified Decongestive Therapist or your physician should you have additional questions. Wishing you all the best Steve, Sincerely, Lindsay Davey
Sorry I forgot to mention thank you very much for your time. Steve
I completed chemo and radiation therapy 2 yrs ago for tonsil cancer.. My lymphedema began a few months later yet was barely visible. Having worsened in recent months I have religiously performed self therapy twice a day based on your video for neck massage. So far my condition deteriorates but I remain hopeful that the therapy will help. My next meeting with the ENT is next month.
Thank you for your help.
Thank you for sharing your story Leroy. I’m very sorry to hear about the challenges you continue to face with your lymphedema. Certainly, there are facial strokes and additional techniques that a CDT therapist could show you, to add to the neck massage you are currently doing, which might improve the condition. I am hopeful that you experience some improvement soon Leroy. Best wishes and good luck at your meeting next month. Warmest Regards, Lindsay Davey
Dear Lindsey, I am at my whit’s end. After two months of dealing with absessed infections and two horrific open wounds that started with a whole body allergy to a detergent I used, I am now dealing with lymphedema. Not knowing anything about the lymph system, I apparently compromised a lymph vessel on top of my head from digging at the intense itching that was my first symptom. Oh, and letting my kitties knead on my scalp. I guess Because of my thin skin from one of my medications, it opens sores under the swellings and weeps. I can feel the lines of fluid running under my skin, also the empty channels after it has drained. They all start on the top back of my head, then they go everywhere and make huge pockets of fluid appear. Besides my face staying mildly-not to me!- swollen, I have had pockets of fluid on the back of my neck, my shoulders, my upper arms, my entire midsection is a balloon, my upper legs, and finally over a week ago it reached my lower left leg. All accompanied by open sores. The intense itching and pain is not just on the skin. It is also eating the fatty tissue away wherever it stays awhile. My right breast has no structure left to it and hurts tremendously, the left is following suit. I’m going to see if I can get an ultrasound done on them.
I’ve been to five different kind of doctors and on five different antibiotics, two for twice the time. Apparently all the doctors have seen since I’m 50lbs. Overweight is the open sores. Two wrote to my regular doctor that I was picking from stress. The last, who is supposed to work with lymphedema, said I not only don’t have it, it cannot be doing what it’s doing, and that I need a psychiatrist. He refused to even run any tests such as a MRL or a Lymphoseintigraph. I’ve been reading for weeks, but have not found any description like what is going on. Help me!!!!
Hello Gwen,
I am so sorry to hear about the long battle you have endured with your skin wounds, infections, itching and painful symptoms. I am glad to hear you have pursued things with a team of physicians, although I’m sorry that so far the antibiotics have not remedied things. While the lymphatic system can be challenged by being overweight, and infection can certainly further contribute to suboptimal drainage, if an infection is present, it is unfortunately contraindicated to recommend manual lymphatic drainage massage, since this could further spread the infection. Open infected skin wounds also present a challenge for compression garments, unfortunately. An ultrasound on your breasts sounds like a good idea, but given the presentation, I’m not entirely surprised that the physicians have not ordered further lymph testing. If lymphedema is indeed present it sounds like a secondary issue to whatever is causing the skin reaction and open sores/itchiness. In my experience, lymphedema itself is not typically painful in the way you have described, does not cause itching, and does not present as pockets of fluid per se, so I’m afraid I don’t feel that lymphatic treatments would be of much help (if indicated in the first place, given the presence of the persisting infection). I very much wish that I had more suggestions to offer Gwen, as I can tell you are feeling very much at a loss for how best to approach this condition. I would suggest you continue to pursue things with your physician and wish you the very best of luck in your search for symptom relief. With sincere and warm regards, Lindsay Davey
Hi. I have been suffering from lymphedema of upper lip and cheeks for seven years. It happened after all tooth restoration when I was 47. I understand that it is very unusual location of lymphedema. Unfortunately there are no specialists for management of lymphedema at the area I live. I live in Belarus. It is a country in eastern Europe.
Could you possibly advice some special technics of lymphatic drainage self massage particularly for this area or it doesn’t differ from the one that was shown?
Thank you for your help.
You have very useful site.
Best regards,
Hello Valentina,
Thank you for your comment. I am very sorry to hear of your lymphedema condition stemming from your tooth restoration, indeed, not something I can say I have seen before in my own practice. Self-massage is definitely something worth trying, as head and neck swelling does tend to do quite well with massage techniques. First of all you would begin with the strokes shown in the video on our lymphedema page of our website, https://torontophysiotherapy.ca/services/lymphedema-treatment/
After that, you would move on to some facial strokes, all of which are based on the same principles. Using a flat hand, and semi-circular strokes to ‘stretch’ the skin. The areas to focus on include, in this order, just in front/below of the ears, underneath the jaw line (on the highest area of the neck), on the cheek itself, and finally to the upper lip area. Retracing your steps in the reverse order, and finishing with repeating the neck strokes (in the video link above). The direction of the semi-circular strokes is outward and downward, and repeating this 20x at each position. I hope this helps as a starting point Valentina. I wish you the best of luck! Most sincerely, and very hopeful that this helps.
Lindsay Davey
Hello Lindsey I am writing in hopes that you can help. I am Meddullary thyriod cancer I have had 4 surgeries and have developed what is being called stage 4 head and neck lymphedema. I have it in my face my eye inside my check and my gum. I have trouble with Balance and the swelling hurts. I have seen therapists but they say no treatment it showed in an ultrasound fibtoric 3 inches by 3 inches . I now have it in my chest and under my arm and in my arm . I asking for any help in finding so care or hope at this point. I was told I can not travel with this condition so I am stuck. I thano you for this page and hope you can help thank you. I have trouble seeing out if left eye I have broken my ankle 3 times from getting loss of balance the inside of the mouth swells in gum and cheek the swelling does not go down at all anymore. I have had the original surgery and they found it ij thr brachial plexuis then anither surgery up radical neck and tail of if the partiod removed. Then 9 tumor of the trachea and 4 positive nodes on the right. I began swelling and was seen was told it would go away it did not . I have seen some therapists but heas and neck they dont do. I have seen it become worse with laying flat , bendiing, moving the arm and for some reason stress. I am trying to get any help i can . Any help would be appreciated please and thank you
Hello Cindy,
My goodness, what a situation you are in. My heart goes out to you Cindy. The history you provide gives me a great idea of the extent of the issues you are having, I hope I can help. At Stage 4 lymphedema, as you have experienced, there is indeed fibrosis of the swelling/tissue which does make it more difficult to treat (though not by any means impossible – it all depends on the individual case). What is good to hear is that you have still seen changes in it – i.e. with body position, arm movement, and stress. This means that at least some component of the swelling is still fluid enough that could likely benefit from drainage massage. Have you seen a CDT therapist, either at the hospital where you have had your surgeries, in a clinic, or at your home? The Lymphedema Association of Ontario website lists all CDT therapists who are actively working in lymphedema management in this province, including some that provide in-home care. If you are anywhere in the GTA I hope you will reach out to me by email, or call either of our clinics, and we could discuss getting a therapist to your home, or provide you with other names. If you have tried the self massage strokes at the neck (per the video on our website), and you haven’t had any luck, I would suggest you continue with this, but in addition, trying to gently soften the areas of fibrosis using flat hands, not too much pressure, and circular strokes. This is a very generalized instruction, and obviously you should consult with a CDT therapist in person if at all possible, to give you far more specific guidelines that will apply to your particular case and swelling/fibrosis. Compression for the face/head does exist, with options you could have a look at to get ideas on-line (facial compression for lymphedema). This would need to be fit by a Certified Fitter, as they would be able to find what is most suitable and show you the various options available. Compression plays a key role particularly in later stage lymphedema, and if you haven’t tried a compression garment yet, this would be something I would suggest looking into. Please let me know if you are in the GTA and I can try to be of additional more direct help. I am sure you have found this already, but sleeping propped up to assist with drainage is a good idea, as are doing regular neck movements throughout the day (ear-to-shoulder in each direction, rotating in each direction), as this will stimulate the lymph nodes that are still present at the neck. I wish you the best of luck Cindy, and encourage you to seek out a CDT therapist that could assist you in your home, so that you can feel more in control of your situation and armed with more self-help techniques as well.
Most Sincerely,
Lindsay Davey
I had a radical neck dissection 10 years ago to remove a small tumor ( squamous cell carcinoma) the surgeon also removed 23 lymph nodes. Afterwards I had 35 radiation treatments. Almost immediately after the radiation treatments stopped I experienced swelling in my neck and face.
I developed lymphoma in my neck and face and have experienced atrophy in my shoulders.
Six years ago I had part of my tongue removed, another squamous cell carcinoma. Again the doctor removed more lymph nodes. My ability to chew my food has been a challenge but I still can eat most foods, although very carefully.
I have been in constant care of an ENT doctor who prescribed steroids to help with the swelling. Most of the swelling subsided but the tissue where the swelling was began to get stiff. I visited with the doctor about the possibility of lymphatic drainage therapy and he sent an order to the local physical therapy clinic. I had therapy 3 times a week for about a month with no visible change.
Recently, after having my esopagus stretched I was referred to a different ENT who referred me to a speech pathologist. After a barium swallow test she gave me several exercises to try and is sending me to a physical therapist to try to drain the lymphatic fluid from my neck and face. It has been ten years since the lymphoma began what are the chances that a CDT therapist will be able too help?
Hello Kenneth,
Thank you for providing such details about your case and history, and I’ve very sorry to hear of your on-going challenges so many years after your initial surgery. With the number of lymph nodes taken and the 35 rounds of radiation you sustained to the same area, I am not surprised to hear that swelling did onset soon thereafter. Yes, I would say that if you sought the care of an experienced CDT therapist, physio, or RMT familiar in treating head and neck cancers that you would have reason to believe that the swelling, and namely, the fibrosis could improve. I would guess that the most effective treatment for you would include some more of this fibrotic soft tissue release work, given I am assuming that there is some long-standing tissue changes that would need to be addressed with manual therapy, given your history. Lymphatic drainage massage could of course be incorporated should swelling be a part of the current situation, but from what we see, longer standing edemas and cases where radiation was part of the patient’s treatment experience leave considerable tissue changes, toughness, ropiness, and fibrosis, all of which can further impede the normal flow of lymphatic fluid, and moreover, restrict the normal freedom of movement at the neck, jaw, and face. The stiffness in the tissues that you describe is what we tend to address as a priority in longer-standing cases such as yours, and in all likelihood, the lymphatic drainage massage would have better luck of working thereafter, or at least, if provided concurrently. I hope this helps Kenneth! Wishing you all the best of luck in your recovery. Most sincerely,
Lindsay Davey
Hi Lindsay,
I had had surgery in 2011 for submandibular lymphoma. Findings were large cell, B cell lymphoma. Surgery was followed by 6 rounds of chemotherapy.
For the past 2 or so years I have been telling my GP that my face is swelling on the side i had surgery, it is reddened down the side of my face from in front of ear to my chin. Clear indentation wear my reading glasses have sat. I have pain in and around my ear.
My GP is reluctant to acknowledge either swelling or redness. If the area is exposed to the sun it becomes quite tingly. There is pain associated with it also.
Is skin redness and the tingle also part of the lyphedema?
Cherilyn
Hello Cherilyn,
I’m sorry to hear of your swelling and the ear pain that you are now experiencing, tingling, and redness. I think it is very reasonable to assume that if your surgical area was below the jaw line/submandibular space, that this may have disrupted lymph nodes in the area, and hence, result in the slow accumulation of lymphatic fluid in the area due to poor drainage from this side of your face/jaw. The redness could be attributed to a buildup of lymphatic fluid, and the tingling a result of the fact that the nerve endings in the area would be affected by the fluid retention. Scar tissue also plays a role in affecting both drainage, and nerve function, from the surgery itself. A CDT therapist could likely be an excellent resource for you, to help you drain the fluid, show you how to do self-massage techniques that work very well for the face/neck, and work on releasing any scar tissue that may be present using soft tissue techniques. Your case does sound very similar to those we see in our office, but I’m happy to say, who experience great benefit from some hands-on work, and learning how to do self-massage as well. I hope this has been helpful Cherilyn! Wishing you all the best, Lindsay Davey
Thank you Lindsay. I live in New Zealand and I’m hoping to find someone who can help me in self massage. What is a CDT therapist?
Cherilyn
Hello Cherilyn,
My pleasure to help. CDT stands for Complex (or Combined) Decongestive Therapy – the gold standard treatment approach for lymphedema. I am sure if you consult the Lymphedema Professional Association in your region, they will have a list of qualified/certified therapists in your area. I hope you have great success with your treatment Cherilyn, All the best, Lindsay
Hi lindsay.
i am Raj from india.my mother is suffering from tonge cancer.but it spreads in lymph nodes in nack .its 3rd stage of cancer .after surgical removal of cancer part.
doctor suggest 30 radiation .but before starting of radiation .my mother face and neck become swelling and pain or some reddish see on swelling parts .i things its lymphedema 3rd stage .and it becomes big head or neck.and because of thik problem .doctors not do radiation.
plz.give me solution to control thik swelling.
and it is dangerous for life .
or it can be normal .
plz.give me all information
Hello Raj,
I’m so very sorry to hear about your mother’s condition. If the surgery is what caused the lymphedema to develop, then the doctors must be concerned that radiation will make it worse (since the radiation would be another challenge to the lymphatic system). There are manual lymphatic drainage massage techniques for the neck, and face, however in this type of situation I would definitely recommend you seek clearance from her doctor to try the massage. If the skin is very swollen, and reddish, and painful, it may be too sensitive to the massage, or a very light touch may be needed. A certified lymphatic drainage therapist in your area would know best how to approach this, and could instruct you as to how to do it yourself. Redness in the area of lymphedema could indicate cellulitis, an infection that can arise under the skin, and in this case, we would not perform lymphatic drainage on the face or neck until antibiotics have been taken to treat the infection. Again, the doctor would be the best person to ask as to whether or not an infection is involved. Compression devices do exist for the face, as you can see if you were to do a search on-line of ‘Facial Compression’. One of these devices might provide your mother with comfort, to help control the swelling, in addition to the massage techniques. I sincerely hope that you can find a lymphatic therapist near you Raj, to give you more detailed advice and treat your mother for her swelling and pain. It can be very normal to see this type of swelling if cancer has spread to the lymph nodes in the neck, or if they have been removed, or exposed to radiation. I’m sorry I can’t be more specific, but I encourage you to seek further care and guidance on the drainage massage and compression as quickly as you can, so that your mother can get relief. I know it is difficult to find experienced therapists, but perhaps there is a Lymphedema Association in India that you could seek out to help you find a therapist to help.
Wishing you and your mother the best of luck Raj. Sincerely, Lindsay Davey
Hi Lindsay, I am hoping you can help my Mum. She had her Thyroid removed December due to papillary cancer followed by 30 sessions of radiotherapy. Mum now has lymphedema of the nec. Her voice is really hoarse, she is constantly having to clear her throat and has a bubbling sound in her throat. She is now having difficulty swallowing. Mum was told to wear sports tape on her neck. But its caused all the skin to be sore. Is there anything you can recommend? And are Mums symptons typical of lymphdema. We are waiting to see her onocologist in case its something else. We are in the uk. Thank you for any advice you can give x
Hi Jules,
Thank you for your email and so sorry to hear of your mother’s papillary cancer and related issues affecting her throat and neck. It sounds like it’s been a terribly challenging time. It sounds like she is having enough issues that if possible, it would be best if she could seek the hands-on help of a certified therapist in your area, who has experience in head and neck myofascial release and lymphatic drainage. Her symptoms sound more to do with radiation tissue damage to her neck region, which is common. Lymphedema in this area can most definitely cause swallowing issues, however, you would typically also see swelling in the face and neck region if lymphedema was present. The 30 rounds of radiation which is common for cancers of this type, can cause a great deal of fibrosis to the skin and underlying tissue layers in the neck, affecting swallowing, saliva production (further challenging swallowing), and neck range of motion. The tape is something that we do use, yes, however it is not sport tape. Rather, it is stretchy tape that we use, Kinesiotape, or something similar. If her skin is thin, or still recovering from the radiation (sensitive, red, recovering from burns, etc) then tape is not what I would suggest using at this point. Our website has a video on the Lymphedema page of the neck strokes that will help promote lymphatic drainage (even if only preventatively), as well as softening the fibrosis in the tissue that may be present, however, again, if her skin is irritated, this too would have to be done gently, so as to help release the fibrotic bands of tissue if any are present, but not so vigorously so as to further irritate the skin. I’m sorry it’s difficult to be more specific for you Jules. I would highly recommend you search the local/regional lymphedema association website in your area to check the listings of therapists that might be of additional help to your mother. My heart goes out to you, and her, with everything she has going on. Wishing you both all the best in her recovery phase. Lindsay Davey
About 9 months ago I was diagnosed with Thyroid Cancer and I had a thyroidectomy and neck dissection, removing about 20 lymph nodes, 16 which were cancerous. Not only did the cancer spread from the thyroid to the lymph but it also spread to the larynx , trachea and esophagus. I credit my fabulous surgeon for doing such a great job in I was told I needed to do 32 treatments of radiation as well RAI ( radioactive iodine treatment). About 6 months later, I noticed that there was lymphedema around the 3-4 inch scar from surgery. Also I might have a little swelling above the scar too , closer to the chin, but it looks more like a pouch of fluid near the scar. I have set up an appointment to see a CLT/ but there are so few therapists skilled in this that it is going to be a month before I am seen. Can you suggest what I should do while I am waiting to see the therapist? I have moved the skin in that are and have been able to get the edema down to 20% of what it was, but I am not sure that is the right plan of action. An hour later the fluid comes right back. I would greatly appreciate some advice from an expert like you. You are so empathetic to everyone’s stories and such a caring person. Would like to hear what you think I should do while I wait. Thanks for your help.
SUSAN
Hello Susan,
My pleasure to try my best to help you, and I must say, good for you to have begun a little self massage for the area. Even a small reduction that is only temporary, IS of great benefit to be doing, given you are not only mobilizing some of the swelling, but you are importantly not allowing the swelling that is present to ‘densify’ (as I call it), by massaging it, thus, your CDT/CLT therapist will have an easier time when you do see them in a month’s time.
The initial strokes we perform as those as shown on my video, which is a good place to start. AFter these strokes, we would suggest you move on to massaging the cheeks just in front of the ears – this is where additional nodes can be stimulated for patients with facial and neck swelling. You can also do semi circular strokes along the jaw line, underneath the jaw, working from the chin toward the ears (your therapist will add additional cues and tips and sequence instruction, but this is just the basics to get you going…). Nothing too forceful, just moving the skin, mobilizing dense areas along the way should you come upon any areas of pooled swelling. At this point I would then recommend that you perform your gentle self massage at the pooling site(s) specifically, working from the outsides inward, i.e. going at the ‘margins’ of the swelling, or scarred area, before going right on the top of it at first. I hope that makes sense! You can then repeat the previous strokes mentioned, working back to the initial steps shown in the video. The CDT therapist will, again, be the best person to show you the specifics here, but given your history and swelling I think this would be an appropriate series to try. Again, do not feel discouraged if the swelling returns, I would still recommend you do the self massage, so as to promote flow from the area, reduce the radiation tissue fibrosis and scarring that is likely at play, and get you a great head start ahead of your consultation in a month’s time. I hope this helps Susan. Wishing you all the best this holiday season!
Warmly,
Lindsay Davey
Hi Lindsay
I finished chemoradiation (no surgery) for stage 4a oropharyngeal cancer nearly 5 months ago and have experienced mild lymphoedema (1a) for about 6 weeks. I am using a Hereford collar (UK NHS device) and doing exercises but am yet to see a specialist. My question is: is this a condition bound to get worse, or is recovery possible?
Richard
Hello Richard,
Thank you for the question, as I am sure it will be of help to others. I am happy to hear you did not have any nodes removed as part of your treatment, as this bodes well for the resolution of your swelling. If radiation is the primary confounding factor I can tell you that most of my patients with this type of treatment protocol do very well with the treatment of their lymphedema. I am pleased to hear you are exercising. Not knowing exactly where you are finding the swelling (neck, under chin, under jaw line, cheeks, inside mouth, etc), I can only say that the massage strokes as shown on my website’s lymphedema page is a good place to start. This will stimulate the lymph nodes that may actually be being somewhat compressed under the collar (again, difficult to say without seeing you!). Then, stimulating the cheek, under jaw line, under chin, and in-front-of-ears areas, are also helpful for facial lymphatic drainage – using a similar style stroke to the one described in the video. I would say to answer your question, that you should feel confidant that you will see meaningful improvement with the swelling by following these massage guidelines, and if possible, seeing a specialist near you for further specific instruction. Radiation can cause the tissue to become very adherent and even fibrotic, but this too will be helped by massaging it which should in turn, help the swelling a great deal as well. I hope this helps Richard! All the best in your recovery. Sincerely, Lindsay Davey
I am a 69-year-old female with inherited whole body lymphedema, which has become apparent over the last several months. Head and neck areas affected include scalp, forehead, inside eyes and mouth (excessively moist eyes and mouth, itchy eyes), cheeks, temples, jawline, chin and down hairline on the sides of my face. At this stage, it actually improves my appearance! The somewhat minimal swelling erases my wrinkles! Self massage is effective at this point, but I am very concerned about what I may be facing in the future. Currently, I am losing weight and undertaking an exercise program. What else do you recommend that I do to ward off progression of this disease? I want to be as proactive as possible.
Hello Pamela,
Thank you for your email and for describing your symptoms (with such humour, no less!). An overall whole-body lymphedema presentation is rather rare, so I can appreciate that you wish to be as proactive as possible and think that this is a great idea. As long as your physician has been consulted and made aware of this whole-body swelling that you are experiencing – that is the only thing I would recommend, particularly any time that symptoms are somewhat atypical (or less the ‘classic’ presentation). Just to determine whether there is another confounding condition at play, and since it is affecting your face and mouth/eyes and so on. Thyroid function, as one example, is something you may wish to ask about. For lymphedema management, you are absolutely on the right track with your exercise program and weight loss goals. Most certainly, this will help both venous, and lymphatic drainage, and is an important piece of management, absolutely. If you have swelling affecting any particular body part where you feel the tissue is becoming hardened at all, or where you find it is uncomfortable, you might consider finding a vendor of compression garments to see if there is a garment that could help you with these symptoms. I would say the legs are a particular area where compression socks/thigh-highs/pantyhose (as the case may be) can really help with containing the swelling. Self massage at the neck (per the video on our website), can be systemically helpful in terms of promoting lymphatic flow in all body regions, and in particular ,those who are experiencing facial/head swelling. Having said that, again, speaking to your doctor is recommended, to make sure that this would be appropriate for you. Diaphragmatic breathing is another approach that is helpful for promoting circulation and lymphatic flow, and you could look up videos of this being done to get an idea of how to perform this breathing technique.
I hope that helps Pamela! Best of luck with your exercise and weight loss goals, which is likely to provide meaningful benefits in terms of your swelling control.
Warm Regards,
Lindsay Davey
Hi Lindsay,
I am a 68 year-old male who had a transhyoid right tongue base excision and bilateral select neck dissection for base of tongue squamous cell carcinoma on August 22, 2016. I also had 41 lymph nodes removed. These lymph all were negative and because of a lack of aggressive features of the tumor(p16 positive), negative margins and no adenopathy, it was determine that there was no need for adjuvant radiation by my ENT team. I was placed on a feeding tube until February 1, 2017 because I had a very difficult time swallowing and not passing numerous video swallowing tests because of aspiration problems. I started neck and shoulder rehabilitation with a physical therapist for four weeks in November 2016 but it was not complete decongestive therapy. Since mid-January my neck region seems to be getting tighter, fuller, and I have discomfort that radiates around my ears but there is no outward swelling although this feeling is constant and very uncomfortable. This condition has also been affecting my daily functions and seems to be getting worse. Do you believe that this could be secondary lymphedema and would it benefit to seek CDT therapy? Your advice would be greatly appreciated.
PS Spelling Corrected, Please disregard the other post!
Hello Michael,
I appreciate the details of your story and am happy to do my best to comment on your current condition.
I am pleased to hear you did initiate the neck and shoulder rehabilitation in November, as even if no decongestive therapy/lymphatic drainage support was involved, the manual therapy and exercises you likely received is indeed a great starting point of the rehabilitative chapter, and so important for optimal lymphatic flow in fact. I’m sorry to hear that you have experienced more tightness/fullness for the past month or so, but happy that you can not see any visible signs of swelling to date. Indeed, a tightness and fullness can be perceived by patients before there is any visible swelling, so your story is not an uncommon one. If your daily functions are now being affected due to the discomfort, and certainly with your history of laboured swallowing capacity, I would recommend that you do seek out the opinion of one of your physicians or oncologists with this relatively recent change. In addition, yes, a decongestive therapist could likely provide meaningful insights as well, and get you started at a self-massage program (which works exceedingly well in our head and neck cancer patients, of all types), possibly taping strategies, additional exercises, and so on, should their assessment lead them to believe that there is a lymphatic effect at play. They would assess your neck and face, and determine if a lymphedema process is going on, as often we can feel the change in the tissue in terms of density, fibrosis, and so on, even when swelling isn’t obvious. With 41 nodes removed, it would not be surprising if the symptoms at your neck are indeed secondary lymphedema, even in the absence of radiation. I hope that helps Michael! Wishing you all the best of luck with this, and hopefully you will have some answers soon about the recent change in status. Sincerely, Lindsay Davey
Dear Lindsay, we live in the U.K. My father had surgery April 2016 to remove cancer in the saliva glands in the cheek and the neck where all the lymph nodes on the left of the face and neck were removed. He followed up with weekly radication treatment for 12 weeks. He recovered really well for the next 5 months but in January 2017 severe swelling in the face an neck appeared almost overnight. This quickly moved into the shoulder on the affected side. He is now in constant and extreme pain in his shoulder. What he describes is nerve pain, sharp and stabbing and brought on by standing and walking. Pain killers don’t help but lying back in a recliner chair alieviate the pain entirely.
He attended lympodema massage therapy but not until February ( in my opinion he should have been referred earlier) and after one session the nurses said he was the worst case they had seen and couldn’t/ wouldn’t treat him. The cancer specialist tells him to see his GP, the GP prescribes pain killers which don’t help ( and he’s very worried about becoming addicted to morphine) he needs relief from this pain but is told physiotherapists/ osteopaths/ chiropractors won’t touch him because of the cancer and lymphodema. He is in despair and feeling suicidal.
You don’t explain in detail how surgery helps some people. Is that an option for my Dad?
Thank you for any help you can give.
Dear Janet,
What an awful turn of events for your father with the extreme pain and swelling that has developed in recent months. My heart goes out to him, as it sounds as if he is a very desperate state. I have seen someone with similar nerve pain in the shoulder girdle/neck from a head and neck cancer, and it stemmed from the effect that the radiation had on the nerves that travel through the area. I hope that the swelling or neck tissue has not become hardened – this can occur (a process called fibrosis) if stagnant swelling persists over time, and can also stem directly from the radiation itself (which it sounds as though he had quite a lengthy radiation treatment phase). I am hopeful and presume that the physiotherapists have tried nerve-targeted therapies (acupuncture, dynamic flossing, and external support to try to reduce the tension on the area, possibly via taping of the shoulder girdle to off-load things…. and the like), and tissue release approaches, to try to alleviate his symptoms. I also presume that gabapentin or lyrica or other nerve-targeted pain management medication has been tried, though possibly without great results if they are now suggested morphine. All of this is just to describe some of the approaches that I hear/see attempted here in Toronto, but is not to cast any doubt as to the course of treatment your father has received to this point. To answer your question in terms of surgery, the surgery for lymphedema would be with someone who has advanced swelling in order to ‘debulk’ the affected area, most typically in the legs, where infection and skin breakdown can become a concern. I have not heard of surgical intervention for lymphedemas of the type that you describe in your father, and certainly his oncologist would refer him to see a plastic surgeon (or other expert) if this was an option for him. I am so sorry I can’t offer more helpful advice Janet, as I’m sure it’s a terribly difficult situation for you all.
My best wishes to your father,
Lindsay Davey
Thank you Lindsay, unfortunately it is all very hard and now turning red/ purple due to the pressure Under the skin. Today we think he was given nerve targeting pain relief as the morphine isn’t working but when researching the medication it is best known to treat depression and epilepsy , not nerve pain. We feel abandoned by the medical professsionals who all just look at him in astonishment. It is a desperately hard time for him and my mother. He only had one lymphatic drainage session and by then it was too late to be effective. None of the other treatments have been offered or tried. We battle on in desperation.
Janet
Dear Janet, I’m just so terribly sorry to hear of the extent of the swelling and now discolouration and no doubt pain. For what it’s worth, many of our patients are on anti-depressants due to the fact that they have a good effect on neuropathic pain, so this is something we see quite a bit actually. So that sounds like a reasonable course of action, and I hope that he experiences some degree of relief with using it in a few days. If pressure alleviates his pain, you could try to wrap around the chin/top of head to apply some pressure to the area (if he would tolerate it), with a tensor bandage type device, or, if you are connected with a lymphedema fitter, you could ask about facial compression garments that they might be able to get quickly. I am sending you my best wishes Janet. Yours truly, Lindsay
I had removal of my Thyroid with Central Neck Dissection, and Right Functional. They removed 17 lymph nodes in those area. Due to Medullary Thyroid cancer in 9-2015. ( I also have a paralyzed vocal chord due to the Nerve being engulfed in the tumor…Since that time it seems like Allery symptoms (drainage and mucus) are so much more noticeable. Also underneath my chin gets full feeling. I never tied them together until 2 days ago, when the allergy medicine (Mucinex) wasn’t helping, and the full feeling under my chin was worse. I begin to research and came across this site.. WONDERFUL!! Thank you.. I will do the exercises, and am getting a referral to a Lymphedema Specialist. ..I am frustrated that not one of my Dr’s suggested this.. I have the Endocrinologist, the Surgeon, and even saw an ENT, and my primary! My question is, is it too late, can therapy help with this issue, even thou it has been 2 years.. THank you, Pam
Hello Pam,
I am so thrilled to hear that you have found our article helpful on head and neck lymphedema, and am pleased that you have taken the extra step to seek a referral to a lymphedema therapist. With 17 nodes removed, (not sure if you also had radiation or not?), you are certainly at risk of developing lymphedema in the facial and neck regions, and indeed, the additional challenges such as mucous production and drainage can certainly compound things. It is NOT too late. The swelling under your chin should certainly still be amenable to improvement from manual lymphatic drainage, even if it has undergone some fibrosis since it originally set in. If it comes and goes, then it is a dynamic swelling and even easier to treat. The strokes that the MLD therapist will show you for at-home are important to see results the fastest, and they can guide you as to how to perform them. A place to start is by having a look at the video we have posted on our Lymphedema website page as well, which they will no doubt review with you as well, in addition to showing you and performing more chin/facial-specific strokes. Best of luck Pam, hopefully it will be onward and upward from here! Thank you for your feedback.
Sincerely,
Lindsay Davey
Dear Lindsay,
Thank you for the massage video. While my ENT has told me about massage and exercises, he has given me neither. I have had to scrape and find what I could on my own. I have had severe swelling or my neck are for about 2 weeks. I am to see a specialist, but that may still be weeks away. So in the meantime I am doing swallowing exercises and massage. Thank you again!
Hello Julie!
You are very welcome! I am pleased if it can bridge the gap until you see a specialist. Indeed, being able to soften, and mobilize/direct the swelling you’re experiencing (given your ENT suggested you try massage), is a great self management strategy to be able to use. I appreciate the feedback Julie, and wish you the very best of luck.
Sincerely,
Lindsay
very informative article. Advanced Surgery treatments are available in India at Vascular Care Center, Somajiguda, Hyderabad.
I finished 16 weeks of chemotherapy and 33 radiation treatments for Stage II breast cancer. I had two lumpectomies and a lymph nodes under my arm removed. About a month after finishing chemo I started having significant swelling in my neck, shoulders and underarm. Recently I am having trouble swallowing and my lymph nodes in my neck are hard. I have seen my oncologist for this and he sent me for an ultrasound to rule out a blood clot around my portal catheter. (negative) I see him next Monday but I came across this article and this sounds exactly like what I have. Any advice on what to ask the oncologist? I seriously need some relief.
Hello Sharon,
Thank you for your comment. If your radiation extended to the area above your collarbone, as is sometimes the case with our breast cancer patients, then there is more affect on the lymph nodes in this area, since many nodes reside above the collarbone and would be challenged by the radiation exposure. This could account for the swelling that you describe as affecting your neck, as well as just your shoulder and underarm. If swallowing is being affected and the lymph nodes in your neck have become hardened, then this is when I would continue to pursue things with your oncology team, since this would be more atypical of lymphedema. Even with exposure of a larger field of radiation, we don’t typically see hardening of the nodes at the neck, nor any impact on swelling (we do see this with head and neck cancer patients who have radiation to these areas themselves, but not typically in our breast cancer patients). I am pleased to hear that they have ruled out a blood clot, but until you see your oncologist I would advise not to do the self massage as shown in the video on our website, given the reason for your neck and swallowing symptoms is still not yet clear. I wish I could be more specific Sharon, but am pleased that you are seeing your team on Monday. In the meantime, if anything worsens in terms of your swallowing capacity or otherwise, you are always advised to seek medical attention right away. My best wishes to you Sharon, and if they deem this to be an atypical presentation of lymphedema or radiation effects, then seeking out the help of a CDT therapist near you could prove very useful.
Warmly,
Lindsay Davey
Sorry, just a correction Sharon. Above it was meant to read ‘nor any impact on SWALLOWING’. My apologies for that error.
Lindsay
Thank you so much for this site. I can’t begin to tell you how frustrating it has been to find knowledgeable professionals on lymphedema. I had a lateral neck dissection in 2009 due to thyroid cancer and had 64 lymph nodes removed., damage to my spinal accessory nerve and a paralyzed vocal cord. I feel intermittent tightness in my throat , shortness of breath, numbness in my neck and ear, and occasional laryngospasms that are really scary. I did find a physical therapist that provided decongestive therapy which was helpful , however she is no longer in the area. Besides the p.t. I’ve gotten no help from medical community. They listen but it is obvious they are not versed in it and have no recommendations. They just confirm what I describe. Since I am in the Buffalo area I am going to look into Toronto. I have been on the low iodine diet for 3 weeks and I am going for another RAI scan tomorrow. ….Thyroglobulin was up a little and I have ongoing reactive nodes. I know internal pressure is difficult to qualify but I would love to find someone that understands lymphedema and has knowledge of the current research and possible treatment plans. So happy I found this site.
Hello Linda,
Thank you for your comments and for describing the experience you have had with your treatment and symptoms. I’m so sorry to hear of your diagnosis, the challenges you have undergone, and the support you feel has been lacking in terms of expertise in this area. Each head and neck cancer patient we meet does indeed have a very unique set of post-treatment side effects, and I want to thank you for describing yours, as I know it will be helpful for so many others experiencing some of the same things. It sounds like a co-ordinated effort would be the best approach in your case – a CDT therapist to deal with any swelling you may be experiencing, manual therapy for any radiation tissue changes/scarring/adhesions (in the accessible tissues), and perhaps an ENT and/or a speech language pathologist who specializes in voice and laryngeal issues of this nature, so that you can be assessed and given manual therapy/exercises to assist with your vocal function. I hope you continue to build a network of team members who can help you with all aspects of your on-going symptoms Linda. Again, I want to thank you sincerely for your contribution here. Most sincerely, Lindsay Davey.
Hi Lindsay,
I am a lymphedema therapist treating patients wick head-and neck lymphedema among others.
I just want to comment on your excellent and informative, as well as comprehensive article. I will refer my patients to your site and appreciate your work.
Warm regards,
Claudia Steele-Major, PT,CLT-LANA
Many kind thanks Claudia, for your kind feedback. We will continue to do our very best to provide information, context, and clinical insights on our research blog, in the hopes of helping those living with lymphedema or who may be at risk of developing it. Cheers! Lindsay
I was recently diagnosed with lymphedema. I had breast cancer in 2010 and had 7 lymph nodes from one side and 3 from the other side removed. In May of this year I went to my doctor to find out why my neck was swollen and he said my lungs were swollen or I had cancer. He sent me to my oncologist and a pulmonologist. Neither one could find anything. I went to see a new doctor and he knew what it was.
My question is what causes lymphedema besides having lymph nodes removed? Lifting heavy things? repetitive work? Heat or Humidity? How do I prevent it from happening?
Hello Celeste,
Thank you for sharing your story, and I’m glad that you finally have a diagnosis that fits with your symptoms. Lymphedema can result from many causes – lymph node removal, radiation, and several other contributing factors. Lifting heavy things, other than after the early post-operative phase, is no longer supported by the research, if the person engages in a progressive strengthening program that enables the lymphatic system to accommodate the new demands, and so on. Repetitive work is similar – these things do not necessary cause lymphedema, though can contribute in some. Unfortunately, it’s a grey area and depending on several factors (numbers of nodes removed, extent of surgery, any complications stemming from treatment, cording, radiation fibrosis, high body weight, and possibly a genetic predisposition), each person has their own unique ‘relative risk’ of developing it. Heat and humidity can contribute given our blood vessels dilate in these conditions and this can challenge our fluid return systems, including our lymphatics. Though, not everyone finds they have an issue in the heat in terms of their lymphedema symptoms. My best advice is for you to visit a CDT therapist, and also to view the video on our website which can help with getting started on the neck self massage – particularly if you are experiencing your swelling in the neck region. However, I would recommend you see a therapist or consult with your doctor first, to make sure that the massage strokes at the neck are appropriate for you. Given you have been cleared by your oncologist, I imagine there will be no issue in doing the self massage, and these strokes can be highly effective in reducing lymphedema, particularly in the neck actually. I hope this helps Celeste. Best of luck and I wish you well with getting your swelling under better control, as lymphedema can be well managed with a few self-help strategies in place, and/or therapy with a CDT therapist as needed. Lindsay Davey
How does one get Pletal? My husband has been treated with cancer on his tongue with bilateral lymph node involvement. Chemo and radiation treatments went well. Post treatment PET scan gave us the news of NED. Lymphodema in front of his throat started, we have had 13 massages and purchased a neck wrap to help redirect the flow. The massages are needed several times a day as the swelling interferes with eating, drinking, and breathing during sleep. He uses a wedge pillow to keep elevated at night. Would Pletal help his situation? How is it prescribed?
Hi Ann,
Thank you for your question. Unfortunately, I’m not familiar with Pletal (which I just looked up, also called Cilostazol) so this would be an excellent question for your husband’s attending physician team members. I’m pleased to hear you have put the massage and compression in place, though I’m so very sorry to hear of the extent to which it is interfering with so many essential functions. I wish you the very best Ann, and hoping there is more that the physicians can offer. If there is radiation fibrosis that is contributing to the impedence of the fluid, I would seek to have this released (by a massage therapist or physiotherapist who is familiar with treating radiation fibrosis), which may provide further opportunity for lymphatic flow. Best wishes to you and your husband Ann, Lindsay Davey
Dear Lindsay,
I am so grateful to have found your website. Thank you for all your information. I have never had cancer or had any Lymph nodes removed, nonetheless, I have Lymphodema that has spread from my left arm and shoulder up my neck, back and face. I severely broke my left arm/shoulder in Oct. 2014. After two years of SEVERE pain and swelling, I pursued allergy testing and found I was allergic to the Nickel in my implant. A Total Reverse Arthoplasty was performed with pure titanium and even within two weeks of surgery, my pain was significantly better. we also hoped for all the swelling to go down…and some did…but then it stopped and the swelling began increasing again. In addition, because of the two years during which the pain was so severe, my arm was completely immobile and every time I tried physical therapy, I ended up with severe vertigo.
To make matters worse, within a couple months of my second surgery, and additional symptoms (like needing increasing amounts of oxygen to breath and aspiration pneumonia) a venogram showed a complete occlusion of my left brachiocephalic vein almost to my heart. Unbelievably, there is NOT ONE single stent in the entire US that is nickle-free…so after 6 failed venographies with balloon dialations, my interventional radiologist advised me to go to another country to get a stent put in ASAP to save my life.
So, approximately 6 months ago we went all the way to Germany to have surgery to have a pure titanium stent inserted to open my brachiocephalic vein.
In the middle of the surgeries and venograms, I also went to a certified Lymphodema specialist, one of the best in the state of Utah. We also later had a home lymphodema therapist for a few months when the vertigo was so severe, I could not leave the house. Each time we tried wrapping my arm, the next day my neck and face would be extremely swollen (more than their normal swelling). We tried the compression machine, but the same thing happened….the swelling always went up instead of down into my body like it should. The lymphodema therapist found one company that actually makes a head & neck & chest piece that connect to the arm piece and even a half hour with the lymphodema pump was amazing. I could actually feel the difference in the pressure in my head, the tightness of my neck and shoulders, the noise & pain in my ear.
Unfortunately, we used every appeal, even with the help of the therapists, my ENT, & my primary care physician. My Medicare Advantage plan (AARP), did eventually approve only a pump and arm segment from a much lesser quality company, even though we tried to explain again and again the arm pump only increases the swelling in my neck, chest, shoulders, neck and head…including making my face look grotesque.
I still have not been able to do any kind of physical therapy on my arm since the revision surgery….it feels like it is tightening again and may turn into locked shoulder. Nonetheless, each time I try to do small exercises, my neck, shoulder and back tighten up and pain and swelling increases (including my left arm). Then it ALWAYS leads to horrific vertigo, much worse than the almost constant dizziness I face. (I am just over 50, but need a walker to move about). I have also passed out a few times and am not sure if it is related to the lymphodema or a new diagnosis of POTS?
For about a year now we have been applying ROCK (kinesalogy tape) around my left arm, shoulder and neck every 4 days and my husband does a lymphatic drainage every single night.
The arm swelling is not getting worse, but it is not getting better. I no longer have any therapy with a lymphodema specialist. I complain to my primary care doctor, to the nurse case manager and to the nurse manager that was hired by my insurance company. They all say they will look into it, but NOTHING ever happens!
I know certain symptoms are tied to the lymphodemia such as the swelling, dizziness, vertigo, noise & pain in ear, neck & shoulder pain and stiffness, and of course, the excessive swelling in my left arm. I also fear the progression and possibility of pitting edema down the road, and another frozen shoulder.
I am completely exasperated and have no idea of what to do at this point. Is there a different way to approach my insurance company? Does the denial stand forever or does it go year by year? If so, what more can I do to try and get approved for the one thing I know will truely help me, a compression pump that includes a head & neck and shoulder/back (chest) piece? and no, we cannot afford to just buy the compression pump and assorted pieces for around a total of $5,000. With all the surgeries and the surgery in Germany, we have no more savings.
I am even wondering if it is time to get a lawyer and try to sue my insurance company…we seem to be denied for just about every claim we make…or it gets lost, or they want more information, even through we already sent in the exact information.
What I am saying is, this problem is not going away, and NO ONE seems to be listening to us. I need help and I need it soon!
I appreciate you taking the time to read my long and complicated case.
I am open to any suggestions you might have.
Thank you.
Dear Jody,
What an incredible story. Your injury, the allergic reaction and significant revision surgery, the brachiocephalic vein compromise, surgery in Germany, and now on-going swelling, really is a story of survival in so many ways, and I know others will be inspired to read what you have shared. It is so heart-breaking to hear that you have found a specialized modality such as the arm pump with the additional head/neck/chest attachment, that works well for your symptoms, and yet, is not covered under available insurance plans nor government funding. I’m afraid I am not aware of the denial/approval processes of insurance companies nor publicly funded streams, and they are all likely to differ a great deal from company to company and place to place. I hope you find a avenue for coverage somehow, with your self advocacy and perseverance. I am not sure whether a denial in one coverage year would mean there is no possibility for approval in another year, but this would certainly be something to ask and pursue, for it’s entirely possible that they would accept an application for funding and consider it anew, in a new coverage year.
On the topic of your functional limitations, I presume you have tried wearing a compression garment for the arm/shoulder/face/neck while exercising, so that doing so does not flare your swelling as much? I wonder if there is any scar tissue that is impeding flow that could be worked on, from any of your multiple surgical interventions? Given there was never a cancer diagnosis in your case, I am happy that radiation tissue effects are not at play in your case. Other ideas for getting the shoulder more active, though you may have tried these already, would be swimming/water therapy, since this provides a natural compression simply with the submersion of the body region/limb in the water. There are more studies to suggest yoga can assist with lymphatic drainage, and in a gentle form, I wonder if there would be a series of positions that could help promote drainage via the deep breathing, node stimulation, and positional effects, without aggravating your shoulder (and in fact, improving its range and strength). Like you, the shoulder and arm function are at the forefront of my mind, so seeking any potential exercise that doesn’t flare your swelling, or where the related spike in swelling could be controlled by use of some form of compression, or post-exercise massage, would be a meaningful goal. A graduated walking program, even with the use of your walker, could also provide meaningful benefit on several fronts. Perhaps a vertigo specialized physiotherapist could provide additional insights into that aspect of your symptoms?
Naturally, it sounds like you have pursued every avenue, and I am glad that you have found some utility in using the K-tape and having daily massage by your husband, to keep the swelling symptoms at more or less a static level. These are excellent self-management techniques that we use regularly in our practice as well. I would just encourage you to continue to seek whatever exercise is possible for the wellness of the shoulder and arm, that doesn’t aggravate your swelling nor vertigo of course. I would assume there is some form of orthopaedic manual therapy that your physiotherapist could deliver, even if passively at first, that would help the shoulder pain and function, without aggravating your swelling or vertigo.
I wish you the very best of luck Jody, and thank you again for sharing your story. It’s so difficult when funding allocation leaves some conditions like lymphedema on the sidelines, and I sincerely hope that with time, or with a new insurance coverage year, you will have luck in securing funding for the pump device that works so well for you.
Sincerely,
Lindsay Davey
Is there a possibility of facial lymphodemia after a single lymph node biopsy and CT scans? I was biopsied to rule out lymphoma, and after exposure to moldy buildings my eye lids, cheeks, ears and chin are swollen to the point of cracking and bleeding. They leak clear fluid and crust over, and the disfigurement is severe. Thanks for putting this information out there. I’ve been to over a dozen types of doctors for this and none know what it is.
I forgot to mention that the scan found enlarged lymph nodes “at every level” in my neck, but not elsewhere.
Hello Christine,
I’m so sorry to hear of your facial swelling and the fact that it has been so difficult to get a diagnosis. I’m afraid I can’t say that I’ve treated anyone with lymphedema stemming from exposure to mould as you’ve described. The lymphatic system is indeed involved in surveying for foreign bacteria, viruses, etc, and I gather the nodes in your neck have been busy trying to process whatever environmental challenges it has been facing. If the lymph nodes in your neck were enlarged at ‘every level’, in addition to the single one biopsied, then I suppose yes, it does follow that you could be suffering from a lymphedema presentation in your face. I am sure your physicians are doing their best to treat the infection as best they can, and hopefully you can seek out the assistance of a lymphatic therapist to provide further relief. I wish you all the best Christine, a very frustrating health challenge you’re in the midst of no doubt. Sincerely, Lindsay Davey
Dear Lindsay:
Thank you very much for your informative article about neck and head lymphedema! My husband had base of tongue cancer about 1.5 years ago. He had 33 times radiation and 7 times targeted chemotherapy, which was ended about 15 months ago. After the treatment, he started physical therapy of lymphedema under the guidance of therapist with massage and compression. The swollen around the neck decreased gradually, but the area got harden. About two or three months ago, he started to experience breathing problem, and his swallow ability got worse. After doctor’s visit with scope, doctor found out he has severe internal lymphedema which blocks his airway, and effects his swallow. We increased our times of massage everyday, but are doubt the effectiveness of outside massages on the internal lymphedema. Do you have any experience and suggestions on effective ways to treat internal lymphedema? Have you heard any surgical option for neck and head lymphedema? Very appreciated any suggestions! Thank you very much!!
Hello Diana,
Thank you for your question. I’m very sorry to hear of your husband’s difficulty with his swelling, particularly because it’s progressed to impeding his swallowing and breathing. I can’t say that I have treated anyone with confirmed ‘internal lymphedema’ in the throat, nor am I aware of a surgical procedure that would apply (unless, of course, his airway or esophagus became significantly compromised). I would approach your husband’s case with a classic CDT approach to head and neck lymphedema, and ensuring that the tissue at the neck is not fibrotic from the extensive radiation he has sustained. I wish him all the very best Diana, and the same to you. :)
Sincerely,
Lindsay Davey
I have lymphedema in my face.. my lips, and cheeks.. I have a machine that sometimes will help, but sometimes they just swell up, at times I look like Donald Duck!!my lips get so swollen..my eye lids have also swollen..
I had tongue cancer in 2014 , I had 71 nodes removed ( neck dissection) 30% of the floor of my mouth and one third of my tongue removed…
My face at times will also get red, no reason… just appears…
I always wear sunscreen it’s part of my morning routine…
What else an I do for the swollen lips , ???
Hello Michelle,
I’m so very sorry to hear of your long history of cancer and related side effects. The facial redness and swelling in the cheeks and face are certainly feature I have seen with our head and neck cancer patients. Lip swelling should also improve with facial and neck manual lymphatic drainage massage techniques, though if you already have a machine that helps drain, I presume you have also already tried the massage approach. There are facial/mouth compression garments that you could source with the help of a compression garment fitter, which might provide relief when they do swell. I hope things improve for you Michelle. Connecting with the lymphedema association in your area may be another avenue to source experienced fitters, therapists, and garment options. Wishing you the best, Sincerely, Lindsay Davey
All very helpful. I have had 3 surgeries for papillary thyroid cancer over the last 50 years. The last surgery in 2010 left me with a hundred less lymph nodes and little explanation for the swelling in my neck and upper shoulder. Luckily I did find out about lymphatic drainage but have been inconsistent with it. I recently have had problems swallowing jaw pain head pain Etc. There was an article on NPR regarding lymphedema and breast cancer patients. This prompted me to Google the relationship between lymphedema and papillary thyroid cancer. Bingo I Came Upon Your information site. I have had elevated inflammation markers that have been unexplained and also much arthritic pain and muscle pain. I’m going to consult with my endocrinologist and rheumatologist and give them your informative article. Thank you
Hello Anne,
Thank you for your comment. I’m so pleased that you have found our information useful, and hope that with consultation with your physicians, you can get additional help to manage your symptoms. Wishing you the best Anne, Sincerely, Lindsay Davey
Hello Lindsay
I had 2 surgeries for a melanoma on my ear. The first one was on 12/18/17 for a biopsy of the sentinel lymph nodes. 2 of my lymph nodes were removed on the right side of my neck. Unfortunately one of the lymph node was positive and on 1/23/18 I had a second surgery to remove 10 more lymph nodes to prevent further spray of the melanoma. My salivary gland was removed as well since a lymph node was attached to it. Pathology came back negative, no cancer cells were found. I am now 6 weeks after surgery and I have been feeling again similar swelling symptoms for 1 week as I felt after surgery. Sensation of swelling or fulness at the lymph nodes sites with sore throat when swallowing at time, on the right side. It’s worst with certain position and when I get up in the morning. I am unable to see any swelling anywhere. I am also suffering from seasonal allergies as well. I am getting up every morning with facial pressure and it gets better after being up for a while. I have been using a nasal spray that really help, its Nasacort. Do you think that my allergies are causing these symptoms or can I have some form of lymphedema?
Thank you for your help
Patrice
Hello Patrice,
Thank you for your question. With 12 nodes removed, but no radiation (per the details here), it may very well be the sinus congestion and allergies at play, although the node compromise may not be helping matters, especially given it was only 3 months ago since your first surgery. Lymphedema can feel like fullness even without visible swelling, so it’s definitely something to continue to monitor. If you do see swelling (be it in your cheek, neck, chin, or jaw area), it’s best to be pro-active and seek treatment with a CDT therapist as soon as possible. There are lost of self-help techniques and massage strokes you can do, even now, including the video on our website showing the massage strokes for the neck. There are additional strokes for the face if you found yourself with swelling at any point, so for these strokes you would need to consult a therapist to learn them. Best wishes Patrice, Sincerely,
Lindsay Davey
Hi Lindsay-
I was hoping you could give us some guidance. Your article was very informative and helpful. My father has had a head and neck cancer where the surgeons took out a squamous cell carcinoma tumor from his cheek. Long story short, after some 6 weeks of radiation, his cancer came back and now it’s a stage IV, infecting the lymph nodes as well. He has been on a low dose chemo (due to his age) for 3 months now. He has had swelling on the surgery side of his face for a while, where his doctors thought it was due to infection (which at some time it was). He has been on antibiotics for a while but his swelling remained. I was doing some research and I strongly believe it’s due to his forming lymphedema. At this point my father barely talks, it’s hard for him to breath, his nutrition is through a G-tube, some parts of his swelled face is numb, some parts of his swelling is actually very tight and stiff (I did some probing) and he has slight proptosis in his eye. He also told me his vision in that eye is worse. I don’t know why I haven’t gotten any lymphedema guidance from his oncologist. I’m afraid it’s getting worse and I need some advice on where should I turn first. He lives in Los angeles, CA. I was wondering in addition of finding a lymphedema specialist, should I also get a ENT specialist as well? Please Lindsay, help me in any way you can. I greatly appreciate it. Thank you!!!
Hello Anna,
I’m so very sorry to hear of your father’s current state. I would presume that with the advanced functional challenges involving his swallowing, speaking, and breathing, that he would be a great candidate to be seen by a Speech Language Pathologist, and a lymphedema therapist could surely add insights as to how best to alleviate some of the swelling and fibrosis you have detected. I can’t say whether an ENT specialist would be meaningful to consult per se, it depends on what is the reason for his inability to speak and swallow… Consulting the LANA and Vodder International websites would be a good start to find a CDT therapist in your area, who you might be able to connect with if or arrange an in-hospital visit. The massage techniques for the face and neck could be shown to you, so that you could help provide this form of therapy to your father, on a more regular basis. I’m glad to hear the infection has passed, that’s an important factor as to whether providing the massage is appropriate. I do wish you the very best Anna, and to your father as well. Most Sincerely, Lindsay Davey
Thank you for this article – so helpful. I have just been given the all clear, 5 years post surgery for occult head and neck cancer and at no time was my lymphedema even mentioned despite pointing it out. I had 47 lymph nodes removed after metastatic cells were found in one. No sign of primary so I only had surgery to remove nodes and neck muscle. The lymphedema was quite frightening when it felt as though I was being strangled. Luckily I work in a small hospital so I was able to speak with medics I knew but my ENT consultant failed to address the issue at all. I am left with some stiffness,reduction in movement and some swelling.
Hello Libby,
Thank you for sharing your story. With 47 nodes removed I am surprised they didn’t mention lymphedema as a likely (or at least possible) secondary condition that was something to be aware of. If there is still stiffness, and some swelling, I would highly recommend you seek out an RMT or Physiotherapist who is familiar with HNC, so that they could facilitate myofascial and scar tissue release. Given you did not have radiation to the area, I would expect that soft tissue approaches, mixed with joint mobilizations if indicated, could increase your functional range of motion. The swelling may well resolve even with restoration of better tissue quality in the neck via these approaches. Wishing you all the best Libby! Sincerely, Lindsay Davey
My neck lymphedema began after chemo and radiation therapy for thyroid cancer. Now it is getting worse and I am planning to visit a physiotherapy and rehabilitation center in Toronto, that my friend suggested. But your article was really helpful and I would like to try the self-therapy based on your video for the neck massage.
Have a question i am a massage therapist and have a client coming in today that was cleared in March with throat and neck cancer and his neck and throat is swollen should I refuse to work on him
Hello Amanda,
My apologies for not getting the time during my clinical hours yesterday to reply sooner – I hope that you were able to navigate things with your patient yesterday afternoon. Based on your email, I am assuming you are not a CDT therapist? He would likely benefit from regular massage techniques to help with tissue fibrosis, and other orthopaedic/MSK needs that regular RMT can readily address. However, in order to actually treat the swelling, he should be seen by a CDT therapist to learn the self-massage series, technique, direction, and bypass routes (as needed). Compression devices or taping may also be indicated in this case. If he has been cleared in March and is being followed by his oncology team, then there is likely no concern/flag in this case, and you could still see him. Any new swellings in a cancer patient I always suggest they follow-up with their team about, but, lymphedema can be delayed onset, so it is likely that this is what is going on (and not further nodal compromise/tumourigenic status change, etc – though, again, he should report this new onset finding to his physician to be sure no further imaging is indicated). So in a nutshell, regular massage is likely to be of benefit to his overall symptoms and any fibrosis at play, and there is likely nothing of concern in terms of treating them in classic methods, however for fluid treatment or direction, a CDT therapist would be the best bet, in my opinion. I hope that helps Amanda! Best Wishes, Lindsay Davey
Was diagnosed with Tongue (tumor at right side of the tongue) & Lymph cancer in beginning of Jan 18. Hadsurgery to Doc remove part of my tongue and all the lymph node on the right side of the neckat end of Jan 18. My radiotherapy of 30 session ended at 2 May 18. Everything was fine till abt 3 wks ago, i start having pain at my back of right side of the tongue and back of the throat (right side only). Very painful esp when i cough. The pain will then spread to the right ear and whole of right side of the head. Did an MRI couple of weeks ago, there is some fluid collection under tongue area. There is slight swelling between the chin and throat area. Doc say is infection fr the surgery, and gave me Augmentin. He felt around inside my mouth and ouside me cheek and neck and say no sign of tumor.
My question is, is my condition lymphedema. Does lymphedema hurt so much like what is happening to me? Will the massage help?
Hello Jer,
Thank you for your comments, and your question. From what you describe here, the infection would readily explain the pain in your tongue, right side of throat, and right ear/head. Lymphedema does not typically present in this way, and while it’s not possible for me to rule out that you are experiencing some swelling of this type given your surgery and radiation details, the nature of the pain is not typical of head and neck cancer related lymphedema. The massage strokes can relieve swelling including lymphedema, depending on where the swelling is present, however, you would need to ensure that your infection has been adequately treated/is resolved, before initiating the massage. Infection of this nature can spread and worsen, and it is contraindicated to do the massage strokes until infection symptoms have subsided and antibiotic meds have taken effect. If, after the infection has passed, you continue to have symptoms of swelling, fullness, etc, it would be a reasonable thing to try. Consulting a CDT therapist in your are would shed further light. I wish you all the best Jer, in your recovery. Sincerely, Lindsay Davey
Hi Lindsey: Have you ever encountered a device like the Flexitouch system? It’s a machine, basically, that does the massage that’s otherwise done manually. After having a tumor removed from the base of my tongue in December and 30 radiation treatments I developed some pretty significant lymphedema on my right (tumor) side; went for CDT, which helped, though my insurance only pays for 30 sessions per year, so now I do the massage at home.
I’m wondering if the device will make that big a difference. It’s big and bulky and loud; my insurance will pay for it but I’m wondering if you’ve heard anything about it, whether it’s worth it or whether I’m better off doing what I’m doing, managing the lymphedema via self-massage.
Thanks for all the helpful info on your site!
Hi Gil, Lindsay asked me to take a look at the Flexitouch system. We’re familiar with pneumatic pumps, but havn’t seen the flexitouch system for head and neck lymphedema before. Pneumatic pumps can certainly be helpful on a case-by-case basis, in their ability to soften edematous tissue, assist with fibrosis, and encourage a generalized flow return. However, because they do not direct fluid away from non-functional lymph nodes toward functional ones (as is the case in most secondary lymphedemas that stem from a cancer treatment process), we tend not to recommend them as a first-line approach. If you=are able to apply self-massage reasonably effectively, and have discussed or tried compression garments designed for the head/neck/face, we are skeptical that the flexitouch system for head and neck lymphedema would offer any significant benefit to you, beyond these traditional tried-and-true approaches. I took a really quick look into the literature, and in the one very preliminary study performed by the company themselves (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5765451/), which was more of a feasibility than a true clinical trial, they reported that after one treatment patients saw an average reduction in facial and neck swelling of approximately 1%. Of course, if you wish to try it, and can afford it / have insurance to cover it, give it a go if you’d like, and please report back to us :)
Hi,
I may have a scenario that you have not come across. I had a lower face lift done in Jan ’18. I was very naive about the invasive nature of the procedure. I just wanted my genetic double chin removed, but got more than I bargained for. A horribly regretful decision. Apparently the surgeon hiked up my platysma muscle (&the connected “SMAS” superficial musculature) and anchored in behind and in front of my ears. He made incisions under my chin, in front and behind my ears, to create skin flaps to open up so that he could proceed with hiking my platysma/SMAS upward and outward, pinned/stapled around the ears with excess skin dissected. Evening of surgery my drain slipped from scalp and ended up with tennis ball sized hematoma on side of neck and seroma near midline of neck. All drained well weeks after surgery and post op recovery seemed fine (with exception of a long lasting fever& secondary sinus infection post influenza…this occurring about 7 weeks after the surgery). About 6 months later I started to notice acute onset of unremitting, extreme, painful heaviness and tightness on both sides of face/neck. It felt like my hearing was not normal…, somehow muffled or stuffy. I did not see notable swelling or visual differences on face/neck, however saw myofascial therapist and PT and acupuncture that all noticed my left side looking “fuller” P. surgeon denied the neck lift was related to the bizarre onset of symptoms 6 mo.s post op. My conditioned worsened into feeling a constant pulling in my neck and shoulder that crept into knotted pain in the back (left shoulder pain). MD said it was, “me contorting inward from stress, causing the shoulder pain.” Massage/cupping only made me feel fuller/heavier/tighter in face and could not relieve the shoulder pain. I saw a chiropractor that used light/laser/LED therapy on my back shoulder, which has assisted with the pain, but did nothing for chinstrap tightness around my ears, neck and chin. The chiropractor has applied kinesio tape to the chinstrap area of my face and this provides some level of comfort that nothing else has provided. I do notice that I feel worse (more tight/full if I lay flatter…which seems to affect my hearing). I asked the P.Surgeon if possible that i’ve suffered some type of lymphatic injury, in which he denies because he was “never near my actual lymph nodes.” But I assume the lift of my “skin” could have caused some type of trauma to the lymphatic vessels?? I’m nearing 10 months post surgery and my condition has not improved. My ability to cope has dwindled as that pain is so loud in my head/face at times. I have young kids that I hate having to see me this way. Had MRI, that yielded nothing notable per PS. I only feel comfortable when bed bound…and then pay for it, after I get up and feel the resulting tightness. Please let me know if you’ve ever observed a similar scenario. Please let me know your thoughts on whether this discomfort is related to lymphatic issues and if so, will my vessels heal? There is no notable firmness of skin or tissues under at this time. Thank you for your time
Hello Sandy,
I’m so sorry to hear of such a long and painful time since your surgery in January. No doubt an exceedingly frustrating and unsettling time for you. I am glad that you’ve pursued things with your surgeon, your family physician, a chiropractor, and have found some relief with the taping techniques. I am unfortunately not familiar with the extent/nature of your type of surgical intervention, though we have treated patients with surgical-related hematoma complications to soften and assist in manual lymphatic drainage of these pooled swellings. Lymphatic accumulation alone in the neck/face does not typically affect our patient’s hearing, though with your long-lasting sinus infection history I might suggest that you consult with an ENT if your hearing continues to be affected. I’m very hopeful that you find relief soon, and it’s possible that a CDT therapist could provide assistance in ensuring that your scar tissue, and any residual swelling, is resolved. I wish you the best of luck Sandy. Sincerely, Lindsay Davey
Hi Lindsay,
I’m a nurse anesthetist (I know a thing or two about medicine), and I believe I have a mild Lymphedema issue on the right side of my face. I used to sleep on my right side exclusively (I don’t anymore), and I wonder if that causes some damage.
I don’t have cancer, and I have never been treated for cancer.
I just discovered your massage video, and maybe it’s in my head, but the pressure in the right side of my face feels relief already.
Could I possibly be on the right track? I have never heard of Lymphedema from anything other than surgery, cancer, occlusion, or radiation.
Hello Christina,
Thank you for your comments and your insights. Sleeping even exclusively on one side of the face won’t typically cause a swelling to manifest, rather, I would argue it would only have impact on flow should there already be swelling present. I am pleased to hear that the massage strokes as described in our video, have proven useful. Indeed, lymphatic massage can help dissipate swellings of many etiologies, be it lymphatic in nature, or otherwise. A case of actual lymphedema does typically follow from surgery/disruption to the lymph nodes in some manner, yes, in which case if your swelling persists I would suggest a consultation with your physician to rule out any other reasons for your facial swelling. Wishing you all the best Christina! Sincerely, Lindsay Davey
Hi Lindsay,
I contacted you in early 2017. I am a 69 year-old male who had a transhyoid right tongue base excision and bilateral select neck dissection for base of tongue squamous cell carcinoma on August 22, 2016. I also had 41 lymph nodes removed. These lymph nodes were all negative and because of a lack of aggressive features of the tumor(hpv 16 positive), negative margins and no adenopathy, it was determine that there was no need for adjuvant radiation by my ENT team at the Mayo Clinic in Rochester. About four months after the surgery, I started to develop secondary lymphedema with fibosis and started CDT treatment learning MLD. Since I live six months in Tampa and six months in Milwaukee, I had been trained in MLD at the two leading cancer hospitals in both cities. I do the exercises daily and sleep at night with a compressed JoviPak but after all of this it seems that the lymphedema and fibrosis are getting worse. I will be leaving for Tampa November 1 and my therapist at Moffit gave me the following Clinic “Healing The Generations, Inc http://healingthegenerations.com/index.html
to try a treatment called Vacodermie(see website). I am curious to know if you have ever heard of this procedure or any other treatments that may help my condition? At your convenience, your input would be greatly appreciated.
Hello Michael,
Thank you for your comment. I’m sorry to hear that fibrosis seems to be setting in, even with your excellent adherence to self care and self massage techniques, compression for overnight, etc. I tried the website link for the Healing the Generations, and that domain name appears to have expired, though I did search for Vacuodermie and was able to read more about this. It appears that this is basically a mechanical cupping technique, using suction to loosen tissue, promote circulation and blood flow, and restore normal tissue flexibility in the area that his fibrotic. I don’t see anything wrong with trying this, and in fact, use manual cupping in my practice with the same goals. I hope you are using this in the hands of someone with expertise, and if you find it is useful, this technique is also readily available in non-mechanical options, which may be something you could use on yourself, without the same cost expenditure. Just some food for thought, but yes, I can see value and merit in the theory of what it proposes to do – though have never used this specific device myself. Wishing you the best Michael! Sincerely, Lindsay Davey
Lindsay,
Thank you for your input on the Vacuodermie device. Since my last reply, I have come across another device, called “Lymphatouch”.The website is lymphatouch.com
Again, I am curious if you have heard of this machine and what is your opinion of it. I am currently checking with CDT therapist in the Tampa Bay, Florida area to see if it is available because the videos on the website have aroused my interest in both lymphedema and fibrosis neck treatment.
Thank you Michael. I have been curious about the Lymphatouch myself actually, and we are in the process of reaching out to the distributor to learn more. The negative pressure style of tissue manipulation does have validity in my opinion, and from my experience using cupping for the same intention. I’m not sure whether it would be applicable to a neck case however – I would encourage you to speak to a representative or therapist who has used it for neck fibrosis specifically. I hope you will update us as to your experience with it, should you pursue it further! Sincerely, Lindsay Davey
This is a great article. Thankoyu for sharng. I am a lymphoedema specialist nurse working in UK clinic. We treat alot of patients with head, neck, facial lymphoedema. Sometimes my biggest `battle’ is getting consultant surgeons/oncologists to appreciate the significance and exstence of internal lymphoedema(around an din tissues of deeper structures of head and neck. We have good results though with MLD/SLD and Deep oscillation therapy and Lymph touch negative pressure.
Many thanks Sue, and for the work you are doing overseas as part of our international community of lymphedema advocates. Lindsay Davey
Dear Lindsay,
Thank you very much for the very informative article and the blog. I am wondering if you could provide your thoughts on my husband’s situation.
My husband had a successful radiation therapy (35 treatments) (no surgery or chemo) for tonsil cancer (hpv-positive; T2, N2a, M0) in the spring of 2015. He has check-ups with his oncologist every 6 months at the Princess Margaret Hospital, but the lymphedema was never discussed as a potential side effect of the treatment. Luckily, my husband did not have any swelling until November of 2018, when his upper lip swelled up (the swelling was on one side only, opposite to the cancer site). His GP advised him to go to the ER, suspecting an allergic reaction to something. My hubby spent about 10 hours in the ER, where the doctors gave him anti-histamine drugs and steroids, prescribed some more as well as to carry an epi-pen. Within 2 days or so, the swelling subsided. He had another episode of a swollen (lower) lip and jaw several weeks later (early December 2018), which we also attributed to some kind of allergy. It resolved itself within a day as well. He saw an allergy specialist in late January, 2019. The doctor was adamant that the swelling was not caused by an allergy, but rather some kind of virus that had already cleared itself.
My husband had another episode yesterday, both lower and upper lip swelled up. The swelling is always on the opposite site from the cancer site. He took Benadryl, and also did the massage after having found your website. The swelling is almost subsided. One thing that I should also mention is that he has been experiencing occasional spasms in his neck over the last year or so.
The GP did not link the swelling to the cancer treatment. The appointment with the oncologist is not for another couple months. I understand that you cannot provide a diagnoses, but are you able to comment if lymphedema can manifest itself in this way? I.e., several years after the cancer treatment, and “appearing” and “disappearing” without obvious triggers or treatments?
Thank you in advance for your insights.
Oxana
Dear Oxana,
Thank you for such a detailed description of your husband’s case and recent swelling episodes. I am pleased to hear he has pursued visits with his GP, the ER, and more recently the allergy specialist, to try to determine all possible contributing factors. Certainly, in my opinion, regardless of this particular swelling feature involving his lip and jaw, lymphedema education should always follow a diagnosis/treatment of head and neck cancer, given that 35 radiation therapy treatments is certainly sufficient to challenge the lymphatic system in the neck and face region. Furthermore, radiation can cause fibrosis at the neck’s soft tissues, and this can cause stiffness, pain, and further increase risk of lymphedema (these soft tissue effects are reversible for the most part, by massaging the area where the tissue is fibrotic/tough in nature – a different type of massage to lymphatic massage). Your husband’s particular swelling feature being latent (years after radiotherapy finished) and intermittent (has come and gone without particular triggers), would not rule out lymphedema necessarily, as these can indeed be features of early lymphedema. I would say however, that the fact that the main area of swelling has involved his lips, is more unusual. Typically, our tonsil cancer patients that receive external beam radiation therapy experience swelling in the neck and/or cheek(s) and/or chin regions, however there are always unique presentations to lymphedema cases so I couldn’t say that your husband’s swelling couldn’t in part be lymphatic in nature. Has your husband had a dental check-up recently? Does he experience pain in his neck or feel that his lymph nodes are swollen/enlarged/tender themselves? It may be worth pursuing a dentistry inquiry (you could ask your family physician about this), to rule out any sort of tooth or mandibular/maxillary/jaw infection or abscess. When there is a compromised lymphatic system in the area of the neck (due to the effects of the radiation on the lymph nodes and vessles, as well as the soft tissues themselves), it is possible that a virus or bacteria could take hold (an ‘opportunistic infection’ so to speak), so continuing to monitor for signs of infection is warranted (fever, malaise, fatigue, etc). It is difficult to weigh in more specifically I’m afraid, but I hope this has been helpful Oxana. If swelling persists or worsens, most definitely I would put in a call to your his team at PMH to pursue things further. If your husband is in the city and wishes to come in for a consultation/assessment to do with his neck, radiation tissue effects, and lymphedema concerns/to receive instruction on self-massage, etc, I would of course be happy to see him. Wishing him all the best, Lindsay Davey
Lymphedma around my eye (below and beside)
I am 41 years old, I was in a car accident when I was 10. That resulted in a scar like a V beside my eye (starting from outside corner and then extending on me cheek (about 2 inches below my eye till about half an inch from my nose opening). and the cheek bone had a fracture that kind of healed but you can feel it by hand although invisible to the eye.
So I never had any problems since the accident. Problem started 3 months ago with a root canal infection in my upper jaw. Antibiotics didnt take it away (I am allergic to penicillin, so they gave me rounds of clindamycin, and xythromax). during that period my face started to swell and hardened accumulation started to develop below and beside the eye.
Tried to retreat the tooth root canal redone, nothing changed.
I had to be hospitalized for a week, and they gave me antibiotics by IV in high doses and for the first two days they gave me decadron. Swelling gone away but once they stopped the decadron swelling came back. Did CT scan and they say its not cancer in the bone.
After hospital , I removed the tooth and they told me things will be fine after because source of infection is gone but nothing changed.
I saw a doctor who told me you have lymphedema on your face and wants me to wait for a month and should try to massage it at home and if it didnt go away he will refer me to lymphedema specialist. I am still on clindamycin and doxycycline.
I asked him if it can be aspirated he no and surgery is not an option and will make it worse.
Another doctor recommended taking a medicine called alphachymotrypsin (pills and cream)
I have been in this story for almost four months without noticable improvement so I am asking your opinion and is there any surgical option available or any recommendations.
Thank you
Hello Mahmoud,
Thank you for describing your story in such detail, as it is sure to help a great many others with similar stories. I am so sorry to hear of your upper jaw infection and the lymphedema which has resulted. In your case, I would expect improvements would be possible (using a variety of lymphatic massage, taping, facial compression, and soft tissue work), given you have not sustained a lymph node removal nor radiation to the neck region. With your scar being a likely factor in the ability of your lymphatic vessels to drain optimally, I would suggest seeing someone who would tackle both the scar tissue as well as the lymphatics. Your physician is correct, there is no aspiration nor surgical intervention that would alleviate things for you, but as I say, I believe lymphatic drainage massage and these other ideas, in the hands of a certified therapist should most certainly be the next step in your treatment approach. I wish you the best of luck with everything Mahmoud, Sincerely, Lindsay Davey
Dear Lindsay,
I had Acinic Cell Carcinoma in 2017 which was resolved with a Parotidectomy. Shortly post surgery I developed Lymphedema in my neck. I went to PT for a bit where I was taught some massage technics that seem to really help when I get the tightness. I have been battling it almost daily since it developed. I have two questions for you. One, if the tightness goes up behind my ear on my head is that normal? Two, is having sharp pain in the areas affected normal when I am swollen?
Thank you in advance for your help with my questions and also thank you for this article. You helped me with an answer that my Dr. couldn’t give me. I have the sweating situation when I eat now and the side of my face gets bright red as well.
Thanks again.
Hello Kari,
My apologies for the long delay before sending a reply. Thank you for sharing your story, I am so pleased to hear that some PT techniques did help with the tightness. Most definitely, with a parotidectomy, you would expect that tightness would extend up to the head behind the ear. There are several muscles and certainly myofascial/fascia bands that extend alongside the neck, including the front and back of the ear zones, and surgery and/or radiation in this area could most certainly produce tightness here. I would suggest you work on this with your PT and you may very well see meaningful improvement. Sharp pain is likely also either related to fascial restriction that is worsened with swelling and pressures exerted on the nerves in this area, or, nerve regeneration pain, which is also common a year or two after surgery, as the nerves slowly recover. This too, may resolve/improve with soft tissue release work. I hope that this is helpful Kari. Wishing you the best with your on-going recovery! Lindsay Davey
I had my lymph node removed, diagnosed with hodgkins lymphoma 2 years ago. Recieved chemo and radiation. A few months after treatment I noticed a pulling sensation at the surgery site which has eventually radiated down my neck to the front of my shoulder. It is most noticable at night when I sleep. There is no outside swelling. Most recently, I have been having hiccups and trouble swallowing at supper time right after I take a first bite. It doesnt seem to be happening at any other meal very often, but almost every evening I experience this. I am concerned that something is going on inside my neck that tests are not picking up on.
Hi Lisa,
Thank you for your question about your neck and swallowing challenges. I am sorry to say that other than releasing the soft tissue restrictions, if any exist, in the area of your surgery or radiation field, I am not sure what additionally I can suggest from a CDT practitioner point of view. I’m pleased to hear that swelling isn’t a primary feature of your current issues. I would suggest a Speech Language Pathologist consultation to determine what is going on mechanically at the esophagus/larynx with your swallowing and hiccuping, as I am sure imaging has ruled out anything pathological. SLPs are truly the experts on swallowing function and likely would have lots to suggest. If you could connect with your primary care providers at your cancer treatment hospital, they could hopefully refer you. I wish you the best of luck Lisa, Lindsay Davey
Hi Lindsay,
I had tongue cancer about 11 years ago and had lymph nodes taken out of jaw under tongue, fortunately they were all negative .
I also had a bad staph infection following surgery and neck was very red , swollen and I couldn’t breathe, stayed in hospital another week on antibiotic Iv and I also had about 15 needles inserted under Jaw to take all the white puss(infection ) that went into a vial, sometimes it took 2 vials of puss and the doctors would do that every other day till my neck improved. To this day, I still get fluid buildup under my chin and my neck tightened on one side and makes my facial appearance look awful. I want to point out that I lost sensation to a certain part of my mandibular muscle in my neck so I have a crooked smile. So fluid would always get under my chin and this has been going on for 11 plus years, what I found that helps get the fluid below my chin is an antibiotic called clarithromycin 500 mg, I’ve noticed the fluid disappear within hours of taking it. I don’t take the whole prescription at one time , I only use it ( usually one or two pills at a time ) and I save the rest for next time I get fluid under my chin. Doctors don’t understand my situation, and. I have to lie ( telling them I have a sinus infection) to get these antibiotic pills. Only clarithromycin works for me. I had done your techniques and they help a little bit but to get that droopy look disappear i have to use antibiotics. My question is their any other possible surgeries out there for this problem. I believe I have this issue because of the needle shots I had under my jaw from the staph infection. I also want to point out I had no chemo or rad. Thanks
Hello Jerry,
Thank you for describing your story, and I’m so sorry to hear of such a long battle with your fluid load under your chin. I trust in addition to trying our self massage techniques, have you tried any compression to the under-chin area? Perhaps for use even for a few hours per day? We have found this can help prevent new fluid from accumulating, or at least, decreasing to the extent that it does. I understand that your case is certainly unique, and without radiation, your primary contributing factor is the lymph node removal and subsequent staph infection. It sounds terribly cumbersome your process to access antibiotics in the way that you have taken to doing so – I wonder if an infectious disease physician might be a consideration (unless you have already accessed this avenue), in order to determine or rule out a bacterial infection, virus, or otherwise. So pleased to hear that your antibiotic does work as quickly as it does, but I can imagine you would be so much more comfortable to have a longer lasting solution. I am not able to suggest nor am aware of any surgical intervention that might be appropriate in your case Jerry, I’m sorry to say. If there is any residual scar tissue from the surgery involving your tongue or from the staph infection that might be further impeding drainage, that might be something to consider having released (manually, by a certified practitioner in massage/lymphatic drainage), which could in theory, help free up these pathways so that less fluid accumulates. I sincerely wish you the best of luck Jerry. Best, Lindsay Davey
Thank you so much for this most helpful article. I wish I had found it earlier in my journey! After modified neck dissection and removal of 79 lymph nodes and parotid gland I had radiation and chemo. No one along the way had ever mentioned lymphedema! I had never heard of the term. I noticed swelling of my cheek during my last two treatments. Upon my follow up with oncologists, I was told I had lymphedema. I had no idea what to expect other than the swelling of cheek, neck and then developing lymphorhea(which I had never heard about either. Research and finding a good lymphodema therapist has helped manage these issues and compression garment, my own daily massage, and a Flexi Touch treatment daily seems to keep it under control. I realize that my swelling, stiffness and shoulder atrophy are mild compared to others in this blog, but I sure wish I had heard of these terms and found this site at the beginning of this process. My therapist has been most helpful during all of this with a lot of information, but I will recommend this site to her to give to new people she sees. I still wish that doctors would warn patients about the possibility of this “side effect” so they can be prepared in case this does develop. Thank you again.
Thank you so much for your kind words Bonnie, but most of all, for sharing your story and for relaying what you have found has worked well for your own swelling management. This is ever so helpful for others to read, and is encouraging, to say the least. Best wishes to you! Lindsay Davey
Great article, the best source of information I’ve come across for this condition. I am one year out after receiving radiotherapy and chemotherapy to treat a cancer at the base of my tongue. I developed a swelling under my chin about 4 months after treatment. It was more a curiosity rather than a concern for me as it was pliable to the touch. My team hasn’t seemed concerned or even mentioned lymphedema, however after a recent scare which turned out to be just an ulcerated tonsil, I realised it had hardened which my dr said was lymphedema, although I’ve not been sent for any treatment. I’ve developed a decrease in mobility in my neck, also I’m getting very sharp cramp like pains in my neck and pulled muscle like pains in my arm and side (although I’m not exerting myself, usually I’m just laid down reading), that I’ve presumed where just late stage side effects to the cancer treatment. Could these be due to the lymphedema instead? Should I be more concerned? My care team don’t appear to be. But everything I’ve read suggests that it needs treatment. I’m rather confused by it all. Any thoughts would be greatly appreciated.
Hello Steven,
I so appreciate these details, and I am sure they ring true with many of our readers. Indeed, lymphedema can start to manifest weeks or months after active treatment, and typically does start out as being a supple swelling, gradually hardening to varying degrees over varying lengths of time thereafter (without treatment). For the local swelling, particularly because you have noticed it hardening, I would absolutely begin to address it by doing self massage strokes to soften the hardened tissue, and then proceed to direct the flow along the lymphatic pathways so that the fluid can drain and so that the lymph nodes and vessels that were exposed to radiation can restore an improved level of function/drainage again. The video found of me doing the massage strokes at the neck on our Lymphedema Services page (Toronto Physiotherapy website) may prove to be helpful to you, in terms of these latter ‘lymphatic drainage’ strokes, intended to stimulate lymph node function and drain the excess fluid from the area it is collecting under the chin. Again, I would massage the area first so as to soften it – rolling the tissue between your fingers/thumb, for example.
If the neck range of motion has been affected, this too is common after radiotherapy exposure to the various muscles and soft tissues of the neck – and important to have these radiation tissue effects released by manual therapy, in order to prevent further stiffening of the neck joints that lie beneath the soft tissues. A physiotherapist or massage therapist would likely be able to help you with this – and I tend to be quite vigorous in my techniques to this end, as stretching alone is typically insufficient in my experience to render irradiated tissues soft and pliable again if that is all that is done in terms of treatment. Again, a rolling technique can prove quite effective anywhere on the side of the neck where you feel the tissue is adherent, and following this with the proper stretching techniques will likely help a great deal. The cramp like pains in the neck could readily be due to radiation tissue adhesions as the nerves start to regenerate, same for the arm and side pains you’re having, but again, seeing a professional experienced in cancer rehab and specifically lymphedema and radiation side-effects would likely very meaningfully help you in learning your own self massage and stretch techniques, and determine all contributing factors to the neck and arm pains as well.
I hope that helps Steven! With swelling under the chin, there are also facial compression garments which can be purchased that can be worn (possibly even with some sponge inserted under the chin area for extra pressure here) to speed up the swelling resolution and density issue you’re having. I have also used a small piece of kinesiotape in this area, on some stretch, so as to create more compression right where my patients need it when swelling exists under the chin. I encourage you to have an assessment with a CDT therapist to get all of these strategies in place, and moreover, determine what will be the best path forward.
I’m so sorry that nobody on your team mentioned lymphedema sooner than this, however, rest assured, you can make excellent gains in the tissue quality, swelling, range of motion, and pain levels, by getting some hands-on help and homework/self-care advice.
I hope this has been helpful Steven. Best of luck, Lindsay Davey
Dear Lindsay,
In 2012 I had a total thyroidectomy with a modified neck dissection (removing 32 lymph nodes and multiple lymph vessels) for stage 4 papillary thyroid cancer. Afterwards, I was given 175mc RAI treatment. For the last 10 months, I’ve been struggling with dizziness, balance issues, pain around my eyes, brain fog, tinnitus and pressure in my ears, also sensitivity to light, sound and smells. It is worse in the morning but never goes away. I have been to an ENT, neurologist, ophthalmologist, rheumatologist, and have had an MRI of my brain, IAC as well as MRA of my brain and neck, along with many blood tests and neck ultrasound – nothing has come up (all normal). I have no signs of external lymphedema, but now wonder if I could have internal lymphedema in my head/neck. I do have the sensation of something in my neck and throat at times (especially when swallowing) but thought that was scar tissue. I also had breast cancer in 2006 but only had 3 lymph nodes removed. I also had basal cell skin cancer on my right eyelid in 2018 and had Moh’s surgery to remove it as well as plastic surgery to reconstruct my eyelid. Are my symptoms suggestive of internal lymphedema? If so, which type of doctor do you suggest I visit to evaluate me? Thank you!
Hello Lisa,
Thank you for your comment and questions, and I’m very sorry to hear of the dizziness and balance, brain fog, ear and vision symptoms that you’ve been experiencing. Given your surgery and radiation was almost 10 years ago, I am glad you have pursued things with an ENT, neurologist, rheumatologist and opthalmologist, as well as had imaging, and so pleased (although I know it is likely very frustrating not to have a clear answer), that everything has come up normal to date. Have you seen a vestibular therapist, in case the symptoms you describe are in fact due to an inner ear/vestibular issue going on?
Lymphedema does not typically present ‘internally’ per se, and I do not see how the Mohs procedure or breast cancer treatment 15 years ago could be contributing. My best advice would be to seek out specifically a vestibular assessment, if there is a dizziness clinic near you, or a vestibular-specializing physiotherapist in your area – if this has not yet been investigated, it may be worth doing so. If the tissues at your neck are very tight/fibrotic from the past surgery and radiation, you may wish to have these worked on with a physiotherapist or massage therapist as well, in the event that compression on any vasculature or of the head&neck musculature could be contributing. We do occasionally see latent radiation effects that can cause difficulty swallowing, moving the head, etc, so again, a cancer physiotherapist or someone trained to work with fibrotic tissue would be another avenue you may wish to explore. I wish that it sounded as though a lymphatic massage approach could help you Lisa, but in this case I’m not confidant you would see much improvement from this alone.
Wishing you all the very best Lisa! Lindsay Davey
Hi Lindsay March 17th I had to have a trach place do to the fact I was having a hard time breathing from having laryngeal cancer. I had the tumor removed the end of March 2021. I did 33 radiation treatments and 7 weeks of chemo I finished June 28th 2021 I still have not been able to have my trach removed do to extreme Lymphedema I finally found a occupational therapist that could only see me twice do to being home care in a different county. She got me a wrap taught me face neck and swallowing exercises plus self massage. I still haven’t been able to find a therapist in a 30 mile range but have been wearing my wrap 15 hrs a day doing my exercises 4-5 times a day putting lotion on the skin the around my trach that was damaged from the radiation my question is it’s been almost a year is it to late to get my swelling done from the lymphedema so I can get the trach removed
Hi Lindsay March 17th I had to have a trach place do to the fact I was having a hard time breathing from having laryngeal cancer. I had the tumor removed the end of March 2021. I did 33 radiation treatments and 7 weeks of chemo I finished June 28th 2021 I still have not been able to have my trach removed do to extreme Lymphedema I finally found a occupational therapist that could only see me twice do to being home care in a different county. She got me a wrap taught me face neck and swallowing exercises plus self massage. I still haven’t been able to find a therapist in a 30 mile range but have been wearing my wrap 15 hrs a day doing my exercises 4-5 times a day putting lotion plon the skin the around my trach that was damaged from the radiation plus doing self massage a few times a day my question is it’s been almost a year is it to late to get my swelling down from the lymphedema so I can get the trach removed
Hello Dottie,
My sincere apologies for the delay in my reply. I’m so very sorry to hear of the incredible challenge you’ve had with your neck and face lymphedema, and the extent to which the surgery and subsequent radiation has caused these downstream effects. In my experience, the lymphedema is certainly a factor in these challenges, but, the radiation can cause scar tissue formation and fibrosis, extensively in some individuals, and this sounds to be what you’re experiencing. This can definitely affect the swallowing capacity and even cause challenges to respiration, which it sounds like you’re having. I would speak to your team members, as I’m sure you have done, to determine if there are any surgical release options, or injection options, or other speech-language-pathologist suggestions that could help the affected tissue at the neck region, that could potentially assist in the tissue quality in this area. I have had a few patients that need to use a G-tube due to complications from their radiation affecting swallowing capacity, and we have tried various myofascial release techniques, even thermal ultrasound in some areas, to try to render the tissue more supple. I wish I could say that it had had a significantly positive effect in these individuals. For what it’s worth however, the lymphedema treatments are typically beneficial for those with apparent swelling in the superficial tissues (swelling right under the skin layer), and on their own, typically won’t assist tissue fibrosis or deeper tissue radiation effects, such as it sounds that you are experiencing. (Lymphatic massage can help if the swelling has itself become harder in nature, but for actual radiation fibrosis, heavier handed techniques/myofascial release/stretching would typically be needed). These sorts of symptoms typically require a multi-disciplinary approach, and I would encourage you to pursue fascial release options with a trained therapist or cancer-care/survivorship team member who can direct you. Some SLPs may have this training, or RMTs, or physio’s – it all depends on who is available on your care team. I wish you the best of luck Dottie. Most sincerely, Lindsay Davey
Oops “the”, not “true” in my last sentence. Sorry for the typo.