Neck atrophy and slumped shoulders

I am new to the site and wished I had found it sooner.  I would not have felt so alone out there.  I had treatments in 1987.  All I can say to you as a mom is fight for your son.  Unfortunately there are only a handful of specialized doctors out there that know about long term symptoms from radiation.  I am now 56 and have had the same problems and more that your son is having since 2004.  It took me until 2009 to get a diagnosis of neck fibrosis.  Keep up the fight for your son.  When I started telling doctors of my symptoms they would look at me like I was crazy and had two heads.  Physical therapy may help with his neck and shoulders.  I now wear a hard collar that I got from an orthopedic doctor because it is so difficult to hold my head up on my own without being in pain.  I also have trouble with food getting stuck in my throat.  Also not to scare you let him know when he gets older to go to a cardiologist and be checked.  I had a heart attack and tripple bypass surgery in 2014 and the doctors said it was due to radiation treatments.  I am fine now.  I also have restrictive lung disease which is coming from the fact that my shoulders slump over also and it causes your lungs to have less room the expand.  The shoulders slump over because it stops the muscles to constrict and tighten in the pecs areas.  I think some of the doctors know our problem it is just getting them to say it.  I hope I have not upset you by letting you know my other symptoms.  I only tell you because I wish I had known what I could have done early on to help me have a better quality of life now.  It is going to be an ongoing battle to fix the muscles and in all the work ahead for him with that he still may not see any fix for it.  I wish him and you lots of luck in your adventure of being a long term survivor.

viola43 said:

Neck fibrosis

hi Buterfli7,

i am a 20 year survivor of Hodgkin's Lymphoma and have had serious RFS for 5 years from radiation. I go to Sloan Kettering long term effects clinic every few years for follow-up. I have tried 2 different rigid collars for neck weakness and pain but I am always interested in how others are managing their symptoms.  Would you please describe the collar you received from an orthopedist? Thanks. I am finding that PT (myofascial release) and acupuncture are most helpful for my symptoms right now.

Thanks, Viola

Viola,  

  Good to hear from you.  I have a vista by aspen.  It is the hard collar with lots of adjustment features on it.  It is not a pretty thing but it helps.  My neck is long and skinny so the adjustments are a good feature.  I did purchase a collar called the headmaster.  I don't use it though.  It puts a lot of pressure on the jaw area and gives me a headache within five minutes of using it.  Just put headmaster collar in the computer and it shows a picture.  I did PT for two months.  My neck felt better for about 30 minutes then back to square one. I do not live close enough to the Sloan Ketttering clinic.  I went to the orthopedic doctor because I had bought the headmaster out of my pocket and did not like it, so I went to the doctor to see what collar he had to offer and let it go through my insurance company.  I am only 56.  After my heart attack in 2014, I had a really hard time with my neck, strength wise.  I also have restrictive lung disease and scarring due to the radiation.  I am trying for disability now.  Do you know of anyone who tried for disability for neck fibrosis and got it?  I am having a hard time getting mine to pass. They said since I had done a job keying on the computer,  I was able to still work. They should have to carry a load of bricks on their head for a while and see how their neck feels.