Is my head and neck lymphedema ‘normal’?By: Lindsay Davey, MScPT, MSc, CDT
March 29, 2016
Editors: Ryan Davey, PhD and Lindsay Davey, MScPT, MSc, CDT
What is the average patient’s experience of head and neck lymphedema? Am I a ‘typical’ case, or somehow unique?
You may suspect that you have lymphedema in your head or neck, or perhaps you’ve been formerly diagnosed with it. But often patients with lymphedema have little exposure to others with the condition. Your family physician or other health care specialists may also have had little exposure to it. (For more information on the condition please see: “Patient Guide: Head and Neck Lymphedema Following Cancer Treatment” or click here for general information on lymphedema)
This can feel a bit isolating. As a result, patients with lymphedema who come to see me often ask: “Am I like the other patients you see?”
The simple answer to this question is usually yes. Patients with lymphedema in the same area of the body typically experience the same physiological changes, progression of the condition, and associated symptoms. This is fairly consistent across patients even if the underlying cause of the lymphatic insufficiency differs.
But I know that patients are often meaning to ask me a more nuanced question: “Are there other people experiencing this condition in the same way as me? Or am I unique in my experience?”
Is my experience of lymphedema unique, or am I like everyone else?
So how does the ‘average’ patient with head and neck lymphedema experience their condition during the period of time when they are first coming to understand it and learning to manage it?
I was curious to find out, so I had a look through the literature to find the largest study that included details about how the patients first present clinically.
The largest study I found was a cohort of 1255 patients treated for Head and Neck Cancer at the University of Texas MD Anderson Cancer Centre, and referred to their Lymphedema Program for evaluation of presumptive head and neck lymphedema (ref1). Of those 1255 patients, 53 were excluded from the study because they didn’t have head and neck lymphedema, or didn’t have a diagnosis of head and neck cancer.
So how similar are these patients’ experiences of head and neck lymphedema? The results are illuminating, in part because this information isn’t widely known.
How does head and neck lymphedema usually present upon first diagnosis?
At the MD Anderson Cancer Center (MDACC) in Texas, 1202 patients treated for head and neck cancer presented with head and neck lymphedema. These patients typically had a diagnosis of squamous cell carcinoma, and almost three quarters had tumour sites in either the oropharynx, oral cavity, or larynx. Over half of patients had lymph node dissections, and over half were treated with both surgery and radiation.
In the tables below you can see the characteristics of these patients when they first presented at intake to the MDACC Lymphedema Program and were confirmed to have lymphedema.
Clinical stages of head and neck lymphedema
As you can see from Table 1, most patients were first confirmed to have lymphedema while they were in stage 1b of the MDACC head and neck lymphedema grading scale. It is interesting to see that even at a seemingly excellent centre for head and neck cancer treatment, identification of patients at early stages of lymphedema is still challenging.
|Stage of lymphedema (MDACC scale)||% of patients|
|0||No visible swelling, but feelings of heaviness.||1 %|
|1a||Soft visible swelling that is reversible, and that is without ‘pitting’. So when you press the area of swelling with your finger it does not leave an indentation behind.||28 %|
|1b||Soft visible swelling that is reversible, with ‘pitting’. So when you press the area of swelling with your finger it leaves an indentation that persists for a short period.||62 %|
|2||Firm visible swelling that is irreversible, but there are no tissue changes such as skin bumpiness and thickening.||9 %|
|3||Firm visible swelling that is irreversible and accompanied by tissue changes.||0 %|
Table 1: Patient stage of lymphedema as assessed at intake into the MDACC Lymphedema Program. Data is shown for 1202 MDACC head and neck cancer patients referred to the program with presumptive diagnosis of head and neck lymphedema. Smith 2015 (ref1).
Sites of head and neck lymphedema
At first diagnosis, the most common site for swelling was found to be the neck and the area under the chin (known as the submental space).
|Site of lymphedema (patients could have more than one site affected)||% of patients|
|Submental space (the area underneath the chin)||89 %|
|Intra-oral (inside the mouth)||18 %|
Table 2: Patient site of lymphedema as assessed at intake into the MDACC Lymphedema Program. Data is shown for 1202 MDACC head and neck cancer patients referred to the program with presumptive diagnosis of head and neck lymphedema. Smith 2015 (ref1).
Symptoms of head and neck lymphedema
Most patients accepted into the MDACC Lymphedema Program were found to have cosmetic concerns and feelings of discomfort with respect to their swelling. But as you can see from the table below, many patients also experienced functional issues.
As a patient progresses through the stages of head and neck lymphedema, their symptoms will get progressively worse. Keep this in mind as you read the below table, if you are in stage 1, cosmetic and functional deficits would be rare, but in stage 2 they would be highly likely. The table represents the response of all patients in the program.
|Patient Symptoms||% of patients|
|Cosmetic concerns (patients were self-conscious about their appearance)||83 %|
|Feelings of discomfort||64 %|
|Functional deficits||37 %|
|i. Swallowing||25 %|
|ii. Breathing||15 %|
|iii. Speaking||11 %|
|iv. Vision||2 %|
Table 3: Patient reported symptoms of lymphedema as assessed at intake into the MDACC Lymphedema Program. Data is shown for 1202 MDACC head and neck cancer patients referred to the program with presumptive diagnosis of head and neck lymphedema. Smith 2015 (ref1).
Does this population really represent me?
Looking at the above tables you may find that your experience places you into one of the smaller groups, or as an outlier altogether. If so, don’t feel disheartened, this population may not be representative of you.
For example, this group of patients had secondary lymphedema arising from cancer and cancer treatment. If you have primary head and neck lymphedema (ie, arising naturally), there may be differences in your experience of lymphedema.
But that’s not all, people in this population fit a fairly narrow mold: 80% were caucasion, and 80% were male. They all also came through the same health care system, which may be more or less intensive in their treatment of head and neck cancer when compared to the centre where you were treated (which can impact rates of lymphedema). The MDACC may also be better or worse at identifying new cases of head and neck lymphedema as compared to other cancer treatment centres. These and other differences could skew the characteristics of this population of patients.
Further to this, there exist a variety of risk factors for lymphedema, which (for breast cancer patients) includes having a high Body Mass Index (BMI) and genetic predisposition (read more here). Such risk factors may differ between you and the population characterized above.
Take home message
In my practice, patient experiences of lymphedema are usually a lot more similar than patients seem to expect.
When you read the above you might feel like you’re one of many, or one of few. But rest assured, there are many patients experiencing this condition just like you are. As many as 50% of patients treated for head and neck cancer develop lymphedema (ref2), so there are a lot more patients out there affected by this condition than it might otherwise appear.
Feel free to share about your experiences, or ask me a question. Sharing is caring :)
- Smith B.G., Hutcheson K.A., Little L.G., et al. Lymphedema outcomes in patients with head and neck cancer. Otolaryngol Head Neck Surg. 2015 Feb;152(2):284-91.
- Deng J., Ridner S.H., Dietrich M.S., et al. Prevalence of secondary lymphedema in patients with head and neck cancer. J Pain Symptom Manage. 2012 Feb;43(2):244-52.
I found this a great source of information
If i read the info about this side effect after radiation, i eould never say yes for this treatment. Very dissapointed.
This has been a heartbreaking experience that I have had to witness. Anyone going through this, I am deeply sorry. Hang in there and keep your head held high!
The doctor told me NOTHING of this!!!! Very [expletive deleted]!!!
Am I doomed to getting worse and worse? I am starting to have a pie face. Can I bandage it to bring swelling down?
I am happy to try to help. I presume you have been treated for a type of head and neck cancer, and are experiencing facial swelling? A CDT therapist can indeed advise you as to how to approach bandaging for the face, and there are also facial compression garments that can be purchased to help. The manual lymphatic massage strokes that appear on our website’s Lymphedema page (a video on the bottom of that page) can be a good place to start, if your skin is intact and in good shape from any radiation you may have had. Again, to determine whether manual lymphatic massage is suitable for you, the best bet would be to ask your physician team members, or, seek out the consultation of a CDT / Lymphatic Drainage therapist in your area. I hope this helps Colleen. I can say that typically we see great improvements in facial swelling with the massage approach to the neck, and facial strokes as well, so I hope you can seek some treatment for your condition and begin to see improvements. I wish you the best of luck Colleen! Sincerely, Lindsay Davey
My son had throat and tongue cancer on which he had 9 weeks of chemo and 7 weeks of radiation. About 6 weeks after treatment was over he developed this swelling in neck and then went up face some. We went to his radiation doctor and said it was lymphedema. He suggested we go to a physical therapist for massage therapy. We have an appointment for this coming week. My question is “If this massage will help him, how long before he sees any results”. Thanks
Thank you for these details and my best wishes to your son in his recovery from the treatment side-effects he is experiencing. When we see someone with relatively newly onset lymphedema in the face/neck stemming from radiation to the lymph nodes in the area, I am happy to say that we get results quite quickly. The fastest results come for those who do regular (twice/day at least) self-massage which your CDT therapist will surely demonstrate to him/you to perform at home. The reason we tend to see good results quickly in facial and neck swelling patients, is because the sheer number of nodes that reside at the neck – being that the swelling is so close to such a large collection of lymph nodes, even with radiation being a factor to their functionality at the moment, we do tend to see improvements quickly (within a few days, even sometimes with the initial treatment of two). The additional interventions of releasing the skin and tissue in the area of radiation (IF it is adherent and IF enough time has passed that it has healed sufficiently) and moving the neck to further stimulate the nodes to function optimally, can really be beneficial. I would recommend you ask your therapist about any neck tissue restrictions you can feel/your son can feel, and address these as well, for optimal flow potential. I hope this helps Glenda. My heart goes out to your son, but thankfully, we really do see excellent results with facial swellings of his nature. Taping and compression are also approaches which can convey further benefit, depending on your son’s presentation and what your therapist recommends. Best wishes, Lindsay Davey
Thanks for much . It gave me the feeling there is hope for my son and this condition.
Have had lymphedema massage and compression therapy for several months following oral cancer and religiously do them both at home. Over the last 3-4 days, have experienced throat and mouth swelling to the point that I haven’t really eaten today. talked to doctor’s nurse who said this was from radiation (don’t know if she knew I was in therapy) but over weekend I developed a fairly high temperature as well, periodic bouts of lots of mucus, and constant mouth/throat discomfort. Shall contact doctor on Monday but also want to know if a virus, etc. can cause such symptoms. I am truly miserable. Any thoughts? Thank you.
My sincere apologies for missing this post from before the holidays, we are having some difficulty with our comments forum and I have discovered we have missed a few posts from weeks ago. I hope the visit with your doctor proved informative, and that if they deemed you to have a bacterial infection given your fever and symptoms, that antibiotics worked well to help. Indeed, you are likely somewhat predisposed to throat infections given the history of oral cancer and radiation to the area, and I hope your doctor can shed further light. Best wishes and I hope you’ve had a better start to the New Year since this illness some weeks ago. Sincerely, Lindsay Davey
This has been so informative, I have had surgery for scc on my tongue and a subsequent :-bi-lateral neck disection to remove some cancerous lymph nodes. I am 3 months after chemo and radiotherapy and experiencing the hardening and swelling associated with lymphedema, more worrying (and not mentioned in this article) is the dark brown mucus when clearing my throat. As I sometimes have trouble swallowing I assume this is trapped food. When I find out more I will post again. Always have a positive attitude.
Please forgive this delayed reply to your comment from December, we were having some difficulty with our comments forum at that time and I am just now able to view some older posts. I’m sorry to hear of your lymphedema and the mucus you are experiencing. I do hope you discussed this with your radiation oncologist (or medical oncologist), as there are likely additional tips and solutions that can assist with swallowing. Please do keep us posted as to what you found worked in your case Lawrence, as there are surely readers who could greatly benefit. Wishing you all the best, Lindsay Davey
I am 72 yaers old and have Lymphoedema of the neck…I am now nearly 4 years post surgery…My primary was at the base of my tongue and secondaries to either side of to my neck..removal of my Lymph nodes…30sestions of Radiotherapy…No Chemotherapy 45 Sessions of Hyperbaric Chamber to assist me in having all my teeth removed due to the Radiotherapy treatment…..It is internall Lymphoedema of the neck which I am suffering from.
But I must say this is the worst I have had in regards to Pain….I had Bowel Cancer and Secondaries to my Liver resulting in 65% of my liver resected 2001/2003….but Lymphoedema of the neck hard to take 24/7……but I must say there are plenty worst off than me suffering daily.
Cheers for now
Please forgive the lengthy delay in my reply, we were having some issues with our comment forum and I am only now able to view some older posts. I thank you for sharing your story. Your attitude is inspiring, and I know others will appreciate you writing about your experiences. Neck lymphedema is indeed challenging, and I hope that you have the resources in place to help assist you with these symptoms as best you can. Wishing you the very best Trevor. Thanks again. Lindsay Davey
My 40year old brother,( non-smoker non drinker no hpv), radiated twice for squamous cell throat cancer. He has no voice box and a stoma and several lymph nodes removed. All tissue is damaged. He has lymphedema. Extreme swelling in neck, face, lips. They suggest reconstructive throat surgery using his chest tissue. However, that won’t occur until after pet scan in February. I fear how much worse it will get till then. He seems to have worst case scenario throughout this entire diagnosis. Any help/info would be appreciated.
I am so sorry to hear of your brother’s situation, and I am so very sorry for the long delay in my reply, as we were having some challenges with our comment forum at that time. I wonder if your brother has had the PET scan yet, and if his status has changed since you wrote. The reconstructive options really are remarkable these days, and I trust he is in good hands with his physician team to become informed about his options. Please keep us posted as to how he’s making out, and if a CDT therapist could provide some relief from the swelling component, I hope he has sought out a therapist to do so. With warm wishes to you and your brother in this challenging time, Sincerely, Lindsay Davey
hello My husband is seeing some swelling in his shoulder,. He had 35 radiation treatments for throat cancer. no chemo. He finished his treatment at end of October. Can Lymphedema happen in the shoulder ? And is massages the only treatment? Is it a bad sign hthat he is already getting it? Can it extend?
Thank you for reaching out, and I’m sorry to hear about your husband’s shoulder swelling. Yes, it’s possible that with 35 rounds of radiation to his neck region, he could experience swelling into his face and neck, but also his chest, shoulder, and upper back. Given the lymph nodes in the neck region are so imperative for the drainage not only of the head and neck, it’s possible that swelling can progress to other regions. Swelling can appear very soon after radiation, even during, so this is not surprising in this aspect, no. Lymphatic massage can be very helpful, and in fact, the strokes shown on the video on our website may be a good place to start. I hope that he will mention this newly onset swelling to his radiation oncologist or surgeon, so that they can ensure it is indeed stemming from his radiation. I wish you the best of luck Francine, and my best wishes to your husband. Sincerely, Lindsay Davey
Hi I had a neck resection for a large tumour (9-10cm) on one side of my neck followed by radiotherapy on both sides. It is now 3 months post radiotherapy and I have developed lymphedema on my neck and under my chin. The thing that is bothering me the most is my voice has changed and swallowing is more difficult. I’m worried that this will get worse is there anything that can help this?
Also I have been massaging the scar tissue quite a lot. Will this make things worse?
Feeling all at sea here!!
Please forgive my lengthy delay in replying. I’m happy to do my best to help. Regarding the scar tissue, this should help a great deal, yes. As it is 3 months following the end of your radiation therapy, I don’t see why massaging the scar would cause any adverse effects (if the skin is healed sufficiently, which I presume it has). This will help lymphatic flow, which should in turn help the challenges you’re having now. Certainly the chin and neck swelling should improve with the scar massage, and in particular with the massage strokes shown in our video on our Lymphedema page (or other similar videos available by reputable companies online). Your primary oncologist should be able to facilitate a referral to a speech language pathologist, who are the experts in swallowing and vocal changes following treatments like yours. With an SLP on your team, in addition to a CDT therapist to help guide you with your lymphatic massage, I am very hopeful you will experience meaningful improvement. I hope this is helpful Brian. Wishing you all the best with your ongoing recovery! Sincerely, Lindsay Davey
Thank you for sharing your story and for your question, and I apologize for the lengthy delay in my reply. We have had some issues with our comments forum which affected some posts in December and January. I am pleased to try my best to help. If your voice and swallowing has become affected, I would strongly urge you to find a CDT therapist trained in lymphatic drainage and fibrosis release, so that you can restore these critical functions. I trust a referral to a Speech Language Pathologist could be arranged by your radiation oncologist/physician team member, as they have other swallowing assessment and treatment techniques that may provide additional help. I think doing self massage at the scar is a great idea and no, this should not make things worse (in my experience, it is an important form of treatment). Wishing you the very best Brian, and please do reply with an update if you have one and would like to share. Sincerely, Lindsay Davey
Thank you for your wealth of knowledge. Greatly appreciated. I went 7 weeks of daily radiation and chemo weekly. I had cancer of lymph nodes in my neck and they removed 27 of them. It has been 4 months since, I have developed a huge swelling of my neck on my right side (point of surgery). Will it go away on it’s own with time or do I need to do something?
Thank you for the comment. If it has been 4 months since your surgery/radiation, I would suggest you do see someone to help you with the massage strokes to drain the fluid that has accumulated. At this point, it’s not likely to resolve on its own if it has progressed to a significant extent. The good news is, it can resolve really effectively with the help of a CDT therapist, who will use massage strokes, possibly taping or compression techniques, and educating you on your own self-care, to reduce the swelling as quickly as possible. Wishing you all the best Kathy, Sincerely, Lindsay Davey
I had surgery just under two weeks ago to removed a cancerous growth in my thyroid bed, along with 8 lymph nodes. This is following in from a total thyriodectamy I had in 2009, due to thyroid cancer.
I have developed swelling around the wound site and my surgeon has drained the area twice now, but it keeps swelling up. He has said to stick on a low fat, no dairy diet for two weeks and he says that my body should naturally absorb the fluid. Is there anything else I can do? I’m worried my neck is going to look this swollen forever and it’s quite uncomfortable. Thank you, Sarah
Thank you for sharing your story. We see this frequently, where there is post-surgical swelling that, even when drained, continues to re-fill (it does so given the nature of the surgery involved node removal). A CDT therapist could readily help you resolve the swelling, and prevent further accumulation. I would suggest that given it’s only been 2 weeks post surgery, the self massage strokes at the neck may be too soon to do on your own, without supervision. However, I strongly encourage you to seek the care of a CDT therapist to assist with this phase of your recovery. I can say with confidence that this stage of swelling should not persist with the right hands-on care. Wishing you the best Sarah, Lindsay Davey
My husband is waiting for his PET scan results .
He has had chemo and radio for small cell neuro endocrine cance of larynx as primary site which is extremely rare.
He has done amazingly well but has lymphodoema under his chin . It is making his pain and swallow even worse. Weve been told he cant have appointment with lymph specialists for massage until ckear PET results. Will doing lymph massage at home in meantime be dangerous ? Why wont they give us home massage instructions … I dont want this to get worse…..
Many thanks for your comment and describing your husband’s condition. I am thrilled to hear he has done so well overall. Is the swelling under the chin hardened/dense/fibrotic in nature? Has it been determined if this is contributing to the swallowing challenge, or is there scarring from surgery or radiation also at play? Yes, occasionally the primary oncology team members do want patients to wait for up to date PET scan results prior to referral to lymphedema care therapists, so that they are certain that there is no other pathology at play in the area. The decision to perform gentle massage under the chin is a grey area – you could discuss this with your husband’s oncologist/surgeon before proceeding (that would be the most prudent answer). I can’t forsee any issue with softening and massaging the area under the chin where his swelling has pooled and is uncomfortable, but given his primary cancer was in the area of the throat, and a PET scan is pending, you may wish to consult with his doctors before doing to ‘full series’ of self massage strokes as seen on our video (Lymphedema Services page). The good news is, our head and neck cancer patients typically really enjoy the experience of the lymphatic massage, given their issues reside in the area of the neck where most lymph nodes are found, and thus, it is also typically highly effective. I wish you and your husband the very best Kate. Sincerely, Lindsay Davey
I feel the same way as many of your contributors. We were not given enough information before radiation, or really, after. The only treatment I have found is $85 a pop, which I am doing weekly, and cannot afford. No real improvement yet, but no progtrssion.
I am so glad I came across this site while researching my current symptoms. I was not warned at all about possible lymphedema of this type prior to my treatments. I had squamous cell cancer in the areas of my soft palate as well as right tonsil; there was also some at the base of the tongue. I received 35 radiation treatments with 7 Cisplatin treatments scheduled, but only 5 of them taken due to low blood counts. I had to receive 2 transfusions during the treatment time though radiation treatments were never interfered with, just missed the 2 chemo sessions. My last radiation treatment was 11/13/17. I began having mouth and tongue ulcers & sores in October of last year, after about the 3rd week of treatments. They got progressively worse and I still have them. Unfortunstely, it has greatly impacted my ability to eat. Everything, both solid and liquid, hurts (my tongue especially) going down. My ability to chew has also been effected as I had 8 molars extracted prior to starting radiation. I also have trouble with saliva production, so things “stick” to my teeth & palate when I try to chew & eat. I have a feeding tube, but even with that, I have lost 60 pounds since 9/26/17. I experience swelling under my chin, mostly on the right side, where I assume the radiation was concentrated as the cancer was mostly on the right tonsil/side of my mouth. These mouth sores are not getting any better, even with proper dental hygiene. I rinse & gargle with either salt water or baking soda at least 4 times a day, always after attempting to eat or drink. I brush & floss often & even the dentist has said my home care is tremendous.
Nevertheless, the mouthsores, esp in & around the tongue continue to plague me. I use “magic swizzle” and Chloraseptic spray, have tried echinacea and Gly-oxide drops. The former 2 alleviate (somewhat) the symptoms, but nothing seems to promote healing. I pray constantly that these sores will heal & only today, finally have the attention of my medical oncologist. I guess it set up a red flag when I called to request a refill of magic swizzle. The nurse called & asked why I needed it & when I explained to her that I’d seen no improvement in the mouth & tongue sores, I was told it should be gone or at least improved by now and they decided to set up an appt with my ENT. I am assuming that the swelling under my chin could be lymphedema but wonder if anyone else with a similar diagnosis & treatment have experienced this big a problem with mouth and tongue sores? Thank you greatly for allowing me a place to share and to read of others’ similar experiences.
Thank you sincerely Lori, what an incredible account of what you’ve been through. I am SO glad to hear you are going to see your ENT today to discuss the mouth sores. I am hopeful another reader will be able to reply with what has worked for them in this regard. Rest assured, I am sure you are not alone in this regard. Wishing you all the best Lori and hoping for a speedy resolution with the mouth sores (and well done with what sounds like exceptional efforts and perseverance at home with your self-care). Warmly, Lindsay Davey
My partner had tongue cancer 8 years ago. He received chemo and radiotherapy and had a lymph glad removed from his neck. The cancer has gone but in the last year his face started to swell, his neck became sore and his throat and under jaw line is as hard as wood. When he shaves straw coloured liquid (sometimes pink) seeps through his skin. The swelling is getting progressively worse and he wakes each morning with a closed eye because the swelling on one side of his face is so bad. He has difficulty swallowing and he gets sharp stabbing pains in his neck which is always hot and sore. He stops breathing while sleeping and I videoed him. In 4 minutes he only took 5 breaths only. His consultant has not given him and advice or information about lyphodema, we had to research ourselves on the internet. The consultants view is that he should be grateful to be alive. I massage him one or two times a day but it does not seem to help. Are the Sharp pains normal? What can we do to help him? Nobody seems to care.
My heart sincerely goes out to you and your partner. You describe such a challenging time, and without a comprehensive program in place to help treat his swelling and swallowing, I can imagine how difficult this is for you both. I would encourage you to seek another physician’s consultation, and to connect with the lymphedema association in your area, so that you can get some advice on a compression solution for your partner, infection risk reduction strategies in place (given it sounds as though the skin is weeping lymphatic fluid), and most importantly, to ensure his swallowing and breathing challenges are addressed. If going to the hospital or emergency department is needed to pursue further medical intervention, I encourage you to do so. I sincerely hope that you find the supports you need. With warmest wishes, Lindsay Davey
Thanks for the helpful information you have posted here. I’m a 64 year-old Caucasian male diagnosed with metastatic squamous cell carcinoma with HPV. I had 31 lymph nodes removed on one side of my neck followed by 31 radiation treatments. Six weeks post radiation I developed lymphedema both internal and external. My symptoms are swallowing issues and impaired speech along with the typical swelling under my chin. I am receiving therapy but nothing seems to help the internal swallowing and speech issues. Any thoughts?
Thank you for reaching out and sharing your story. Is your CDT therapist using internal massage strokes (on the inside of your mouth/cheeks) in their approach? Sometimes if/when fibrosis sets in, it can be best addressed not only by manual lymphatic drainage to the head/neck/facial areas externally, but internally as well. A facial compression garment might provide further benefit, and some of our patients seek a consultation with a speech language pathologist for swallowing homework and exercises for speech improvement. I hope this helps Gary. If fibrosis has set in I have also found that occasionally a heavier handed massage technique is needed, but this would be difficult to advise on without seeing you in person, of course. Wishing you the best of luck in your recovery Gary. Sincerely,
Thank you for the quick reply Lindsay. No, internal massage has not been suggested by either of the two therapists that are treating me. I did purchase a SwellSpots compression garment and one therapist fashioned a cervical collar that I’m trying also. It seems to provide short-term relief of the swelling, but nothing has impacted the choking I occasionally experience while eating and the voice is constantly up and down. I did have help from a speech/swallow therapist during my radiation, but additional sessions with her are being held until I complete the lymphedema therapy. Again, thanks for your interest.
Iv had broken neck surgery but neck is swollen even after 2 years
I’m so sorry to hear that, and thank you for sharing. I hope that some self massage could promote softening of the tissue, if the swelling has become dense over the past 2 years. We tend to find the tissue does still respond even after long periods of time, so it may be worth trying if you are inclined to. We wish you the very best, Lindsay Davey
Surgery was September of 2019. Mild lymphedema in my face. Going to a lymphedema therapist. The worst area is my upper lip. Any suggestions would help.
Head and neck cancer lymphedema tends to do quite well overall, given the redundancy of drainage capacity that exists at the neck region, that drains the face including lip area. If your lymphatic therapist is on board, I would keep up with the self-massage they have prescribed, and even consider taping techniques to cover the area of swelling (kinesiotape, or ‘stretchy’ tape) – provided your skin can tolerate it. Including both outside and inside the lip is important, as I a sure your therapist has tried, and if there is a compression garment you could wear (often these cover just the cheeks and under chin area, but some do cover the whole face, though we don’t tend to recommend this type of garment for mild swelling only), that is certainly something to consider. As I say, I tend to use taping techniques and plenty of massage with mild edema of the face, and in time, things should improve. Wishing you all the best Anita!
Thank you for your response to my email. In your note you mentioned a compression garment for cheek and neck. Could you either send me a link or even a picture may help? Thanking you in advance.
My pleasure to try to help. Here are links to two different compression options for the face/cheeks/chin area that you may wish to consider.
EPSTEIN Facioplasty support:
JOBST also has a more basic model:
My mother had partial glosectomy surgery in september 2019, neck disection, followed by 3 chemo and 33 radio aiming left neck only. She developed lymphedema in the area under the chin. The Doctors never told us there were therapyst and specialists that could treat this, they just said it would go away in some time. The lymphedema had actually been reducing fine, but since 2 weeks ago, suddenly it came back, causing her pain and a lot of disconfort. I want to ask you if this is normal, can it just come back after it’s been diminishing?
I’m very sorry to hear of your mother’s swelling, and the lack of pro-active education displayed by her physician team members. The dewlap area is commonly affected by lymphedema after this type of surgery and radiation exposure, which is the area under the chin. Yes, lymphedema can certainly ebb and flow, as it were, and there can be periods of improved drainage alternating with periods of accumulation. If she can try her best to do some self-massage – the video on our website on the Lymphedema Services page, at the bottom, will show a basic how-to for the initial strokes, and then if she follows this with massaging the dewlap area to soften it (if it is hardened at all), and then draining it toward each side of the neck, that would be a good place to start. Ideally, she would be evaluated by a lymphedema therapist and given more specific instructions. Compression is also very helpful for this area of accumulation, even if only worn overnight if the swelling is not too advanced or dense in nature. There are facial compression garments that are available on-line, but again, it’s difficult to recommend a particular one without seeing her in person. I hope this helps Andrew, I wish her the best of luck! Sincerely, Lindsay Davey
Hi Lindsay, your blog is incredible, so thank you for that because I feel seen. I have recently noticed swelling with pitting edema under my chin area and I am not a cancer patient but I have had a tonsillectomy about 8 years ago. 6 years ago I injured my ankle and had swelling and cellulitis in the area for around a month but the swelling went away with minimal swelling that I still experience but it’s just tightness in the join and is not visually noticeable.
I have recently noticed that my swelling is getting worse, tight and painful (sore) but when i look back on my photos from 2 years ago, I notice the swelling there but it was smaller. I do also have thyroid nodules that are quite large on both sides, could they be causing this swelling? Is this lymphedema? Is it caused from a tonsillectomy and can I reverse it?
Thank you for all you do.
Thank you for your question. I am so happy to hear that you have found our blog helpful. Happy to weigh in on your case, as best I can. Swelling under the chin would not be related to any injury at the ankle, and I am not familiar with any chin-area swelling condition related to a tonsillectomy. Given the swelling is newly onset, and your tonsillectomy was 8 years ago, I do not suspect they are related. If you have a thyroid issue with enlarged nodules in this area, I would certainly pursue this with your physician to determine whether there is any connection to the under-chin swelling, and to rule in/out any possible infection or hyperthyroid issue (or otherwise). Lymphedema, even in the non-cancer type, would rarely present in isolation under the chin, so I would rather assume that a swelling here is more likely related to a thyroid or mouth/dental/periodontal issue. In any case, I would suggest speaking to your doctor or dentist about your under chin swelling, particularly if it is pitting edema, to rule out any other condition at play. If it is pitting and/or worsening over time, an under-chin compression garment or taping solution may help this symptom, as could manual lymphatic drainage massage techniques, which a qualified (CDT) therapist could instruct you on. I wish you all the best Sally, I hope this has been helpful!
I had a radical neck dissection 11 years ago when I was 28. I had 3 tumors, my entire thyroid, and about 200 lymph nodes from my head, neck, and upper chest removed. The lymphedema to my face, under my chin, and my neck seems to be getting worse. I have constant pain and stiffness in my neck and jaw. The swelling is very noticeable and has caused my face to be larger on one side. I have issues swallowing. The latest issue is that clear lymph fluid constantly drains behind my ears and causes the skin to be irritated and crack and bleed. I am not even sure what to do at this point. My doctor has said that after this many years it will not get better and I can’t find anyone who specializes in lymphatic drainage/massage. I would greatly appreciate anything you can recommend as this is causing me a great deal of pain and depression. Thank you.
Thank you for your comments, and my apologies for the delay in my reply. Facial/neck swelling from your extensive surgery is common and can, as you’re finding, worsen ever years later, unfortunately. With swallowing issues, I would strongly recommend you also consult your physician, just so that they’re aware and can refer you to a registered dietician if modifications to your diet/food consistency becomes needed. The swelling, hardness, stiffness, and decreased range of motion of the jaw and neck can certainly be addressed by a CDT therapist. There are self-massage techniques you can learn, both to soften any hardened tissue areas, and promote drainage via other pathways, stimulating whatever lymph node pathways are still present (but presently overwhelmed). I would recommend you go online on the Vodder International website which lists many CDT trained therapists all over the world (anyone who has trained specifically under the Vodder program); the LANA (Lymphedema Association of North America) may also have a listing functionality to find certified therapists, as do provincial bodies such as the one that we fall under, the Lymphedema Association of Ontario. I really hope you can find someone close to you to get you started on the necessary massage, exercises, and compression options, that will provide you with meaningful improvement in your symptoms. Wishing you all the best Kristen, know that you are not alone!
Sincerely, Lindsay Davey
Okay, so this blog is great as there doesn’t seem to be a lot of attention payed to the after effects of cancer treatment. I’ve learned a ton and appreciate it. So my question is…where does this end? With death? I have neck lymphadema with obvious throat swelling. Hard to swallow (sometimes impossible), I can’t eat the number of calories I need (I’m struggling to keep up weight), and lately I wake up early in the morning gasping for breath. Literally I can’t breath. I have been doing the massages, the compression bandage, and exercise and nothing seems to be changing the course of my condition. So…back to that question…what happens to extreme cases…..
My heart goes out to you, what an awful struggle you find yourself in, following your cancer treatment. I commend you for doing all of the things you’ve listed regarding the swelling, and I hope that the swelling in your face and neck (under the skin), is minimal, given all of your efforts. Unfortunately, as you have experienced, the issues that can sometimes arise in the deeper tissues, at the level of the throat, esophagus, and larynx/trachea, are much more difficult to treat. The approaches you have taken are all well worth doing to control lymphedema and superficial swelling in the face and neck, to be sure. However, I would recommend asking for a referral to see a therapist who can try to address any myofascial/soft tissue restrictions that exist in the neck, particularly within the area that you had radiation (if you did), that may be affecting the function of your throat/laryngeal structures. If you have noticed your head position changed since your treatment, taking a forward or stooped position, where it is more difficult to look up and bring your head back in line with your shoulders, I would definitely seek the care of a physiotherapist with myofascial training to try to address the soft tissue restrictions causing this, as best they can. In rare cases, tissue changes that are caused by exposure to radiation in this area of the body can cause challenges with speech, swallowing, and respiration, so I strongly encourage you to consult your team for referrals to a Speech Language Pathologist, an OT for possible bracing for your trunk/neck if you’re finding the head/neck is becoming stiff in a forward position (again, due to the tissue changes and tightness in the front of the neck), and a physiotherapist, as discussed. The other issue is ensuring that you have adequate swallowing capacity to be eating a regular diet, and an SLP would be able to do a swallowing assessment to make sure you are not aspirating any of your food, and to make recommendations as to what/how to change your diet to ensure you don’t. I’m really so sorry for the complications you’re experiencing Ken, but I would strongly suggest you reach out to your team and request referrals for a multidisciplinary approach so that you can improve things as best as possible.
Sending you my most sincere heartfelt wishes Ken, I hope some of the suggestions here will be of help to you.
Best Wishes, Lindsay Davey
Hi. I had a tumour removed from my tongue 12 years ago. As a precaution some lymph nodes in left side of neck were removed to see if the cancer had spread. Thankfully it hadn’t. I have always experienced tightness at the sight of the neck dissection scar. In the last year though I have had difficulty swallowing and have a tight feeling as though I am being choked. The feeling of not being able to breathe with ease makes me panic.I have facial swelling and swelling behind the ear. This is sometimes hard but softens with regular massage. I have had a scan to check there is no reoccurrence of cancer. Are my symptoms typical of lymphedema and has anyone else experienced similar issues so long after initial surgery?
Thank you very much for your comment, and my apologies for the delay in my reply. What you describe here is very common indeed, and yes, there can certainly be a latency to the onset of symptoms, often triggered by a number of factors (and often difficult to say for sure why lymphedema/tissue restriction changes after being stable previously). Tension at the scar site is absolutely something that I would pursue with a massage therapist or physiotherapist who has experience in this type of surgical tissue release, and even better, someone with lymphatic training who can help drain the face/ear areas thereafter. I’m pleased to hear that it does soften with regular massage, this bodes well that in the right hands, or with some instruction as to other techniques you might use yourself, you could help alleviate these newer symptoms. In short, yes, these symptoms are normal for a post-node dissection case, even in the absence of radiation (if that was the case with you). I hope you find the professional/CDT support you need to adjust things in your soft tissue and drainage techniques to get the most out of your massage efforts. Wishing you luck with it Christina, you are certainly not alone. Best, Lindsay Davey
Nine months ago I started to have a slight swelling in the body of my lower mandible that got worse by the evening and is painful. I thought it was a tooth abscess. It has become more frequently swollen and a small section has hardened and appears to be starting to become bi-lateral. I’ve seen specialists in neurology, ENT, and facial pain. The last physician I consulted with dealing with facial pain suggested it is lymphatic in nature. The general response from other physicians has been they have never seen this and are unable to help. I have not had cancer surgery or injury, I’m in my 40s and live in rural Vermont. I am having a very hard time finding a doctor that can provide an informed diagnosis to rule in or out lymphedema. Any suggestions on how to find a physician? In the early stages of lymphedema would an MRI be able to detect abnormalities? Are radiologist generally trained to detect lymphedema? The hospital where I had the MRI testing reported no abnormalities. During a visit to a specialty clinic on face pain, there were questions from the radiology department about if the results were normal. Any help you can provide is very much appreciated.
Thank you for your comments and for describing your story, I’m so sorry that so far you have been left with more questions than answers, though I am happy to hear that all investigations have not turned up anything of a sinister or pathological nature. Lymphedema in the face typically does follow a surgery or radiation or lymphatic compromise/injury, but there are always cases that are of unknown aetiology (cause) and where lymphatic drainage massage could readily help with symptoms, even if the root cause is not known. Compression options for the face are also something that you may wish to consider – simple device exist that can be worn even overnight as a starting point that can help with mandibular-based swelling, as can kinesiotaping techniques under the chin, which a physiotherapist or CDT therapist could readily show you. An MRI is not typically used for lymphedema diagnosis, no, rather, it was likely ordered by your physician in order to further pursue the root cause of the issue in the area (and I’m happy to hear it was normal). In terms of the swelling itself, I would suggest you do seek out a lymphedema therapist to assist, as most swelling conditions, irrespective of cause, can be improved by lymphatic massage techniques and compression options that could also be discussed. I hope that helps Keisha, wishing you well! Lindsay Davey
Your empathy, expertise, and insights are fantastic and thank you SO SO much for them. My situation is similar to Mr Walker (above) and just be able to network is helpful. The sheer terror and anxiety at 2am wondering if you’ll make it through the night is indescribable. My Dr prescribed Lorazepam and while it’s not a cure, does help reduce the anxiety. Like Mr Walker, I reassure myself that there are many worse off, and I applaud his courage, but knowing that science is still not clear on treatment or cure, I’m suggesting that trying to reduce true emotional stress may be helpful
Thank you again for your wonderful blog.
It’s our pleasure to help as best we can Al, and as you say, the knowledge that there are others who have been through similar diagnoses/treatments/side effects and who may be having similar challenges as you are, can be very helpful in and of itself. I’m very happy to that you have found ways to manage your anxiety, which is a valid goal and certainly helpful to share in this forum as well. My best wishes to you Al, and thank you for your comments here. Lindsay Davey