Home » Rehab Science Blog » Lymphedema » Is my head and neck lymphedema ‘normal’?

Is my head and neck lymphedema ‘normal’?

By: Lindsay Davey, MScPT, MSc, CDT  
Last Updated: March 29, 2016
Editors: Ryan Davey, PhD and Lindsay Davey, MScPT, MSc, CDT

Stones making indents on a beach metaphor for head and neck lymphedema

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
0No visible swelling, but feelings of heaviness.1 %
1aSoft 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 %
1bSoft 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 %
2Firm visible swelling that is irreversible, but there are no tissue changes such as skin bumpiness and thickening.9 %
3Firm 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
Neck90 %
Submental space (the area underneath the chin)89 %
Face53 %
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 discomfort64 %
Functional deficits37 %
i. Swallowing25 %
ii. Breathing15 %
iii. Speaking11 %
iv. Vision2 %

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 :)

References

  1. 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.
  2. 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.

38 Comments

  1. Jana patchin Jana patchin says:

    I found this a great source of information 

  2. Li Li says:

    If i read the info about this side effect after radiation, i eould never say yes for this treatment. Very dissapointed.

  3. Tiki Tiki says:

    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!

  4. Terri Terri says:

    The doctor told me NOTHING of this!!!!  Very [expletive deleted]!!!

  5. Colleen Colleen says:

    Am I doomed to getting worse and worse? I am starting to have a pie face. Can I bandage it to bring swelling down?

  6. Lindsay Davey Lindsay Davey says:

    Hello Colleen,
    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

  7. Glenda Baker Glenda Baker says:

    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

  8. Lindsay Davey Lindsay Davey says:

    Hello Glenda,
    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

  9. Glenda Baker Glenda Baker says:

    Thanks for much . It gave me the feeling there is hope for my son and this condition.

  10. 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. 

  11. Lawrence Bennett Lawrence Bennett says:

    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.

  12. Trevor Wayne Halligan Trevor Wayne Halligan says:

    Hi Lindsay
    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
    Trevor

  13. Connie Kampmeier Connie Kampmeier says:

    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.

  14. FRANCINE FRANCINE says:

    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?

  15. Lindsay Davey Lindsay Davey says:

    Hello Francine,

    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

  16. Brian Brian says:

    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!!

  17. Lindsay Davey Lindsay Davey says:

    Hello Brian,
    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

  18. kathy silva kathy silva says:

    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?

  19. Lindsay Davey Lindsay Davey says:

    Hello Kathy,

    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

  20. Sarah Sarah says:

    Hi Lindsay,

    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 

  21. Lindsay Davey Lindsay Davey says:

    Hello Martha,
    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

  22. Lindsay Davey Lindsay Davey says:

    Hello Lawrence,
    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

  23. Lindsay Davey Lindsay Davey says:

    Hello Trevor,
    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

  24. Lindsay Davey Lindsay Davey says:

    Hello Brian,
    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

  25. Lindsay Davey Lindsay Davey says:

    Hello Connie,
    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

  26. Lindsay Davey Lindsay Davey says:

    Hi 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

  27. Kate Kate says:

    Hi Lynsey
    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…..

  28. Nancy Cressman Nancy Cressman says:

    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.

  29. Lindsay Davey Lindsay Davey says:

    Hello Kate,
    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

  30. lori ruth lori ruth says:

    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. 

  31. Lindsay Davey Lindsay Davey says:

    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

  32. Marcia Marcia says:

    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.

  33. Lindsay Davey Lindsay Davey says:

    Dear Marcia,
    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

  34. Gary Gary says:

    Lindsay,
    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?

  35. Lindsay Davey Lindsay Davey says:

    Hello Gary,
    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,
    Lindsay Davey

  36. Gary Gary says:

    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.

  37. Anonymous Anonymous says:

    Iv had broken neck surgery but neck is swollen even after 2 years

  38. 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

Leave a Reply

Your email address will not be published.