I have one quick question and am hoping someone can answer it please. since the fibula free flap March 08 the lymphedema in my neck and chin seems to be getting worse. During my last visit with my oncologist she did not seem concerned. I attended a lymphedema clinic here in Winston-Salem for 3 visits and they proved they knew nothing about how to treat the edema. During my third and may I say last visit she actually brought a book into the room and after 45 mins of "treatment" she told me to see if Dr. Couch would send me to a therapist in Chapel Hill to set up a plan of treatment and send it to them. Please, someone give me a little advice about whether there is anything that can help.

Suzy,
I am so sorry I didn't see this post sooner. I'm not sure that I have any real answer for you, but I do believe a suggestion could help.
My mom, Rose, has lymphedema in her neck from a partial neck dissection, left side. She did NOT receive lymphedema treatment right away and when she finally did it had really progressed. Her neck at the time felt like that of a tree branch, hard as wood. She also felt it occuring and seeked treatment. In the beginning she went to the CCC where she was treated for everything; the therapists there were not able to help her as much as we had hoped. We looked into local therapists, there are not many who specialize in lymphedema treatment, at least none that we found who weren't sitting with a book open in front of them trying to apply this treatment. She was finally getting some decent help but then they said they felt maybe she should try some new methods not yet tried locally. It wasn't good. After about 3 months or more, I happened to open up to a lady I worked with about Mom's ongoing issues. She gave me the number of her lymph therapist (she had breast cancer) and I called right away. I scheduled an appointment for her and she has been going to her since. The therapist believes that once there is lymph node involvement you should seek treatment as soon as your surgeon/onc allows. My moms nd was on the left side, by the time we met Kim, the therapist, it was all the way across her neck. My mom was extremely uncomfortable and becoming less able to lift her head and turn her neck as she should have been able. Within one treatment we saw hope. You should see how pliable her skin and muscle is now. I call Kim the Miracle Worker. She is very passionate about what she does. I do believe she may be the person who might be able to advise you. She is in PA, but she has many contacts, and if my memory serves me correctly I think someone not far from where you are. Unfortunately it iate here and my mom is away on vacation with my dad (hooray! Felt well enough to drive all the way to GA) and is not available this week. I'm sure she would be happy to share her experience with you. If you would like to speak with her therapist, I am certain she could aim you in the right direction, email or PM me and I will forward you her info.
Do NOT give up hope! I believe there is someone who will be able to help you.
I'll be thinking of you, and praying too of course.
Donna

Suzy, try to find a PT who has experience with lymphedema.
My husband had the edema around his neck after radiation. It looked like he swallowed a grapefruit (maybe he did since he had flunked his swallowing test)and it was hard. After a few sessions with PT and home exercises it's gone. Once in awhile it comes back but then it goes away the next day.
Before you make an appt ask for the PT supervisor and tell them you need a therapist who is knowledgeable about this or if they caN refer you to someone who is

I have just signed in for the first time in several months and saw your answer to my post. I had about given up hearing from anyone regarding the lymphedema. Please email me the information as now the edema is in my chin and down my thorat. It goes down some but comes back quickly. I tried doing the exercises the PT here taught me but it does not help and I am at my wits end. I have trouble swallowing but when I go back to see my oncologist on March 17 I am sure she will tell me it will get better. She has never shown concern over my swelling but it is scary and I get to where I think I am not going to be able to swallow. Thanks for replying to the post because as I said when I did not see any repsonses I stopped coming to the site. I only came here this morning to show a freidn at work about Roger Ebert's oral cancer. Thanks for your response and please get back to me as soon as you can. I will sign back in every night from now on. I am almost 24 months cancer free as of March 13.

Here in the Uk our hospices run lymphoedema clinics .They take place every day and there are also outreach clinics in villages further away.The clinics are run by lymphoedema specialist nurses,and they treat legs,arms ,heads,in fact any part of the anatomy affected by lymphoedema caused by any number of diseases including cancer.
It is a specialist area and i am sure you must have lymphoedema specialists in the USA so it might be worth an internet search or an enquiry at a hospice.

Hi Suzy,
I had PT twice a week for many months by a PT that specializes in Head and Neck problems and it really helped the lymphedema. You need to find a physical therapist that knows how to massage your neck to deal with the lymphedema. This may be difficult in since you are in a rural area but you could get lucky. Have you asked at the hospital for a referral?

Take cate,
Eileen

I received physical therapy 2 times per week at the local hospital - wound treatment department. Also an edema garment made by Solaris was helpful in keeping the night time swelling down. Type Lynphedema in the search box in the upper right corner and you will find a thread started by ratface on 12/28/09 that has additional information on the garment. Good Luck

They may be here but are very difficult to locate. I work for Novant Health and am a nurse. I saw what they called thier lymphedema PT as I stated in the post and was charged 900.00 for 3 visits which did not help anything and they even admitted they did not do head/neck. Why they charged is beyond me but I guess I could google therapy and hope to find someone here. Thank you for your response as I seemed to be really depressed and getting worried at times of choking R/T edema of the chin and throat. Working helps to keep my mind off a lot of the problem but I work night shift so people won't look at me like I have some dread disease.

As I stated I work for the health industry who quite frankly got 900 bucks from my insurance for nothing. I will keep looking and have gotten my hopes up thanks to all yoru responses. Am smiling now..

Sorry that you are having trouble finding the thread in the search - so, let me give you the info about the edema garment.

solarismed.com
414-918-9180

Item Code FN-MA "Tribute individually manufactured therapeutic nightwear edema garment" (Previously FN-NK) E1399

I did the exercises the PT gave me 3 times a day 7 days a week for the 6 weeks I was in PT and then continued on for probably about another month. Those exercises combined with the above garment made a huge difference. I can look in the mirror now and no gobbler hangiing on my neck. Don't get discouraged.