Hyperbaric Chamber therapy for Atrophied Bones/Muscles

mkurtzhals
mkurtzhals Member Posts: 8
in Long-Term Effects of Treatment #1

Hello All, 

 

I had childhood hodgekins disease and have some severe atrophy of my right shoulder/Arm.  Has anyone ever explored Hyperbaric therapy or any other ideas how to strengthen or make this similar to the other side?

Comments

  • cathyp
    cathyp Member Posts: 376 Member
    #2
    I was 29 when I was dx'd with

    I was 29 when I was dx'd with Hodgkins Lymphoma in 1989 and again in 1994.  I have radiation Fibrosis Syndrome from the radiation treatments (atrophied muscles of the neck, shoulders and back).  You can google this and find the leading expert on it, Dr Michael Stubblefield at MSKCC in NYC, you can watch his videos and erad his papers.  He recommends specialized physical therapy to slow the progression of RFS.  You situation may be somewhat different as you were so young when you were treated as your body was growing and developing.  Regardless, he works with child and young adult survivotrs of Hodgkins Disease as well as other survivors treated w/rads and chemo. It's imprtant to work with a physical therapist who is familiar with your past treatments and the effect it has on your body.

    Good Luck,

    Cathy

  • Valjo06
    Valjo06 Member Posts: 17
    #3
    Atrophy - for Cathyp too

    Hi.  I have talked to you b4 over discussion boards and looked up alot of the info you've given under different discussions.  Thanks for all the information.  I was wondering, and sorry if I'm being too personal, but are you still working?  I am 54, had hodgkins, total rads, in 1980.  in the last 10 years my symptoms are getting worse, and they keep getting worse.  Neck, shoulders, upper back, atrophy alot, and due to fusion I had at L4/L5, I have numbness pinching burning, pain, in all limbs.  I checked into Dr. Stubblefield, but even if he would see me, I live near St Louis and with insurance costs, travel, etc., etc., it's too expensive.  I ask if you still work because I am having a hard time at work. My job is pretty much sitting all day doing paperwork. I just saw a new neurologist at the request of my pain mgmt doc (who is wonderful) and he has ruled that there is nothing wrong on MRIs but that I have radiation myelopathy (damage).  My pain mgmt doc won't talk disability, and neither will my md, because outward appearance, they dont' see anything wrong with me.  I was just curious if you or anyone else out there is in tremendous pain but is still working due to no success in getting on disability.  I DONT want to be on disability, would love to keep working but finding it hard to do my job and stay happy with all the pain there is.  I hide it well, I really don't say much at work, but as soon as I get home, it's pretty much either flat on my back or I have to keep walking/moving.  Mainly lying on couch, especially on work days.  I have tried all pain meds there are and they either don't work or I cannot handle them.  I went over this list with the neuro and he said I have tried them all, there is nothing else new out there.  If you want to respond, or anyone else, great.  Thanks and have a wonderful day. God Bless you all. 

  • cathyp
    cathyp Member Posts: 376 Member
    #4
    Valjo06 said:

    Atrophy - for Cathyp too

    Hi.  I have talked to you b4 over discussion boards and looked up alot of the info you've given under different discussions.  Thanks for all the information.  I was wondering, and sorry if I'm being too personal, but are you still working?  I am 54, had hodgkins, total rads, in 1980.  in the last 10 years my symptoms are getting worse, and they keep getting worse.  Neck, shoulders, upper back, atrophy alot, and due to fusion I had at L4/L5, I have numbness pinching burning, pain, in all limbs.  I checked into Dr. Stubblefield, but even if he would see me, I live near St Louis and with insurance costs, travel, etc., etc., it's too expensive.  I ask if you still work because I am having a hard time at work. My job is pretty much sitting all day doing paperwork. I just saw a new neurologist at the request of my pain mgmt doc (who is wonderful) and he has ruled that there is nothing wrong on MRIs but that I have radiation myelopathy (damage).  My pain mgmt doc won't talk disability, and neither will my md, because outward appearance, they dont' see anything wrong with me.  I was just curious if you or anyone else out there is in tremendous pain but is still working due to no success in getting on disability.  I DONT want to be on disability, would love to keep working but finding it hard to do my job and stay happy with all the pain there is.  I hide it well, I really don't say much at work, but as soon as I get home, it's pretty much either flat on my back or I have to keep walking/moving.  Mainly lying on couch, especially on work days.  I have tried all pain meds there are and they either don't work or I cannot handle them.  I went over this list with the neuro and he said I have tried them all, there is nothing else new out there.  If you want to respond, or anyone else, great.  Thanks and have a wonderful day. God Bless you all. 

    Hi Valjo06!  So good to hear

    Hi Valjo06!  So good to hear from you.  I'll shoot you a private message.  Cathy

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