Home » Rehab Science Blog » Lymphedema » Head and Neck Lymphedema

Patient guide: head and neck lymphedema following cancer treatment

Head and neck lymphedema is a very common late side effect of treatment for head and neck cancer.  It is a chronic condition with potentially severe implications for quality of life.  Unfortunately, knowledge of the condition is poor and clinical studies are sparse.  Here we provide an overview of the current clinical understanding of the condition and how it can be managed.

Want to know more about how your experience compares to 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.

Lymph-glands-and-vessels-of-head-and-neck

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:

  1. Visible swelling under the chin, in the neck, or in the face including eyes and lips.
  2. 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:

  1. Pronounced swelling in the face and neck
  2. Swelling feels hard and solid to the touch
  3. Visual or auditory impairment
  4. Difficulty breathing, swallowing, eating or speaking
  5. 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).

Foldi lymphedema rating scale modified for head and neck lymphedema

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:

  1. Have received chemotherapy before or after surgery (ref. 7),
  2. Have high body mass index (BMI)
  3. Have genetic factors associated with lymphedema
  4. 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:

  1. 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.
  2. Exercise regularly following the guidelines provided by your CDT therapist to help aid lymph drainage.
  3. Maintain a healthy body weight.
  4. 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.
  5. 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.
  6. Moisturize skin to prevent drying.
  7. 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 to remove accumulated lymph and adipose tissue (ref. 13) or lymphaticovenous anastomosis (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:

  1. 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.
  2. 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.
  3. 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

  1. Gray’s Anatomy illustration: http://www.bartleby.com/107/illus602.html.
  2. 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.
  3. 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.
  4. Smith B.G. and Lewin J.S. Lymphedema management in head and neck cancer. Curr Opin Otolaryngol Head Neck Surg. 2010 Jun; 18(3): 153-8.
  5. 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.
  6. 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).
  7. 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).
  8. Dietz A., Rudat V., et al. Chronic laryngeal edema as a late reaction to radiochemotherapy. [in German]. HNO. 1998; 46: 731-38.
  9. 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.
  10. 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.
  11. 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.
  12.  Johansson K, Branje E. Arm lymphoedema in a cohort of breast cancer survivors10 years after diagnosis. Acta Oncol. 2010; 49(2):166-73.
  13. 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.
  14. 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.

55 Comments

  1. Denise Henri Denise Henri says:

    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.

  2. Lindsay Davey Lindsay Davey says:

    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.

  3. Barb Nowakowski Barb Nowakowski says:

    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!  

  4. Lindsay Davey Lindsay Davey says:

    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

  5. Dianne Cooper Dianne Cooper says:

    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 

  6. Jane Jane says:

    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

  7. Lindsay Davey Lindsay Davey says:

    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

  8. Lindsay Davey Lindsay Davey says:

    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

  9. Del Haney Del Haney says:

    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!

  10. Lindsay Davey Lindsay Davey says:

    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

  11. Steve Kontos Steve Kontos says:

    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. 

  12. Steve Kontos Steve Kontos says:

    Sorry I  forgot to mention  thank you  very much for your time.  Steve 

  13. Lindsay Davey Lindsay Davey says:

    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

  14. Leroy Kendell Leroy Kendell says:

    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.

  15. Lindsay Davey Lindsay Davey says:

    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

  16. Gwen Owens Gwen Owens says:

    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!!!!

  17. Lindsay Davey Lindsay Davey says:

    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

  18. Valentina Valentina says:

    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,

  19. Lindsay Davey Lindsay Davey says:

    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

  20. Cindy russell Cindy russell says:

    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

  21. Lindsay Davey Lindsay Davey says:

    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

  22. Kenneth Coggins Kenneth Coggins says:

    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?

  23. Lindsay Davey Lindsay Davey says:

    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

  24. Cherilyn Eriksen Cherilyn Eriksen says:

    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

  25. Lindsay Davey Lindsay Davey says:

    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

  26. Anonymous Anonymous says:

    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

  27. Lindsay Davey Lindsay Davey says:

    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

  28. Raj singh Raj singh says:

    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

  29. Lindsay Davey Lindsay Davey says:

    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

  30. jules jules says:

    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

  31. Lindsay Davey Lindsay Davey says:

    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

  32. Susan Gordon Susan Gordon says:

    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

  33. Lindsay Davey Lindsay Davey says:

    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

  34. Richard Richard says:

    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

  35. Lindsay Davey Lindsay Davey says:

    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

  36. Pamela T. Kuhnell Pamela T. Kuhnell says:

    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.

  37. Lindsay Davey Lindsay Davey says:

    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

  38. Michael Vernezze Michael Vernezze says:

    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!

  39. Lindsay Davey Lindsay Davey says:

    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

  40. Janet Janet says:

    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.

  41. Lindsay Davey Lindsay Davey says:

    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

  42. Janet Janet says:

    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

  43. Lindsay Davey Lindsay Davey says:

    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

  44. Pam Pam says:

    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

  45. Lindsay Davey Lindsay Davey says:

    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

  46. Julie Davidson Julie Davidson says:

    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!

  47. Lindsay Davey Lindsay Davey says:

    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

  48. Pravalika Pravalika says:

    very informative article. Advanced Surgery treatments are available in India at Vascular Care Center, Somajiguda, Hyderabad.

  49. Sharon West Sharon West says:

    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.

  50. Lindsay Davey Lindsay Davey says:

    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

  51. Lindsay Davey Lindsay Davey says:

    Sorry, just a correction Sharon. Above it was meant to read ‘nor any impact on SWALLOWING’. My apologies for that error.
    Lindsay

  52. Linda Linda says:

    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. 

  53. Lindsay Davey Lindsay Davey says:

    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.

  54. Claudia Claudia says:

    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

  55. Lindsay Davey Lindsay Davey says:

    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

Leave a Reply

Your email address will not be published.