My husband had radiation treatments for cancer of the tonsil in 2008. The radiation treatments damaged his spinal cord and he has been diagnosed with delayed radiation myelopathy. He has constant pain and progressive muscle weakness. The head of the neurology department at the university said there is nothing that can be done and it will just continue to progress. He has tried a pain management clinic but no relief from that either.

Is anyone aware of any research being done or things you have tried to alleviate pain or slow the progression?

Have you taken him for a second opinion at a different facility?

Karalee,

I have been going through the same thing for several years. I have lost half my weight in muscles along with the most unbelievable pain head to toe from 2009-2012. I don't believe it is untreatable and there are a lot of studies being done but mostly in Spain. The symptoms can be managed as well as the pain but it takes a heck of a lot of work. I have completely lost so much muscle you can feel the joints in my shoulders, hips and knees. I have accomplished some amazing things and have not been on any pain meds for a year now in addition to riding the bike over 1,500 mikes and walking over 500 miles in the past year. This was from being in a motorized wheelchair and on methadone.

It took about 6-7 hours a day doing various exercises for many weeks and then down to 2-3 hrs 3-4 times a week. I will be blunt, it takes a huge commitment and a lot of work plus repetitive blood tests and nutrition management.

I cannot guarantee your husband will get the same results but I'm willing to help in any way as the end result is death. I don't believe I have changed that prognosis but I think I have extended the inevitable.

Im willing to do anything possible to help but I want to know how much your husband wants help. What I was told only allowed things to escalate faster. I had almost a dozen doctors trying to help me but most of what they told me was later determined by me to be false and not aggressive enough.

Ed

Mark has seen at least 4 neurologists. Gabapentin helped for a short while. He is struggling both physically and mentally right now. He has rallied and been a good care giver for me since my recent surgery. Ed, I will show him your post and have him contact you if he would like your help. Thanks for the offer of assistance.

This is one area that so many are left to just wither away. It is so difficult because there aren't enough numbers to justify spending a lot of time or money or research on. In addition, the random nature of how and where radiation fibrosis starts and how it presents is a mystery, even to neurologists. After a barrage of tests such as EMG's, MRI's and even spinal fluid analysis, in the end the diagnosis process is only designed to rule out things like ALS. Neurologists won't spend a lot of time either, beyond very basic analysis and treatment because there is no money or real diagnostic codes for insurance purposes. A lot of survivors with significant issues can be misdiagnosed with ALS which gets the right care for managing symptoms, although radiation damage does not progress as fast as most cases of ALS.

I wish your husband and you well. Anything I can do feel free to private message me. The last thing I want is for all the folks dealing with radiation fibrosis to start thinking this is something they can expect. It is very rare.

Ed