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Thread: New and confused...

  1. #1
    Join Date
    Feb 2004
    Posts
    1

    New and confused...

    My husband has been suffering from scoliosis since 1994 (he was 16) when it was inititally diagnosed along with an osteoid osteoma (a benign tumor that is a known cause of painful secondary scoliosis). The tumor was removed, vertebrae were fused, and a chip of bone from his hip was used in the procedure. He then spent over a year in a brace.

    He was told by his surgeon that he did not need physical therapy after surgery and had not had any until the past few months.

    I had suspected that something was wrong with the prognosis of no physical therapy, and had been pursuing him about it for quite some time. He was reticent because he felt there was nothing it could possibly do to ease the constant pain he is still in.

    Now, his physical therapists are appalled at the state of his spine and the surrounding muscles. They suspect that he may have arthritis, or other forms of degenerative muscles conditions due to the atrophying of many of the mucles in his back.

    I know that treatment for scoliosis is difficult, but I was wondering if anyone else has had an experience like this and what they have done about it.

    I want to do whatever I can for my husband, but am frustrated by the lack of consideration and care already provided for by his doctors.

    Any help or comments are much appreciated.

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
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    6,802
    Most of the scoliosis surgeons that I know do not prescribe physical therapy unless there is a specific problem that needs addressing. My own physical therapist tells me that people who have long spine fusions should not be using their back muscles at all. Instead, she had me learn how to use abdominal muscles instead, and it's helped a lot with pain.

    If your husband still has a lot of pain, I'd suggest that he be seen by another specialist for a second opinion. You can find a list of specialists at http://www.srs.org.

    Regards,
    Linda

  3. #3
    Join Date
    Sep 2003
    Posts
    48

    new and confused

    "... My own physical therapist tells me that people who have long spine fusions should not be using their back muscles at all. Instead, she had me learn how to use abdominal muscles instead..."

    Could you please explain the part about not using back muscles at all? How is it possible to go through a day without using these muscles? Wouldn't you atrophy and not be able to even stand up? This is really freaking me out because my daughter is having a double fusion to L2 in a couple of weeks, and there has never been any mention of losing the ability to use her back muscles. She is really looking forward to getting through her recovery period and begin her life again - does this mean no health club or fitness programs? eeeeeKKKKKK.....

  4. #4
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Hi Paulasue...

    I'm not sure I know enough to explain it in more detail to you. My take is that if we use the muscles that attach to the part of the spine that is to be fused, it will cause movement of the spine preventing fusion. I think it would be a good idea for you to talk to your daughter's surgeon. My own surgeon told me to avoid weight equipment that involved exercising the spine, but I don't have a clue as to whether that belief comes from actual knowledge or is just an educated guess. As far as I know, there is no published literature showing the differences between people who are really active after long fusion, to those who aren't as active.

    The one thing that the medical community knows for certain is that the discs above and below long fusions are more at risk for degeneration, and it is believed that activities that put a lot of stress on those discs will accelerate degeneration.

    Sorry that I can't be of more help.

    Regards,
    Linda

  5. #5
    Join Date
    Oct 2003
    Posts
    9

    post surgery activity

    I go to the gym, and play ultimate frisbee with friends, ski, etc. I do crunches every morning, and I will say that I notice lack of exercise makes my back MORE sore. I feel better when I work out my abs for some reason. PErhaps it eases the pressure on the back muscles?

    I avoid TARGETING my back when I work out, but I do cardio, which I think works out everything. I also do arms and legs, which all use the back muscles to some degree.

    My surgeon only said to avoid jarring activity, such as horseback riding. Your daughter should be able to return to a full, normal life. Some people do have a lot of pain after surgery... it's a risk we take, unfortunately. I was lucky, and consider myself a success story - I am pain free and active.
    Rachel

  6. #6
    Join Date
    Sep 2003
    Posts
    48
    Hi, Rachel,

    Thank you so much for you reply. Does your fusion extend into the lumbar area? My daughter's will be to L2. I also was wondering if you do any form of dancing - this is her greatest love and what she is most afraid of not being able to do well again (post recovery, of course). Wondered if you have any insight to share on that subject. Thanks again for sharing the information.

    Paula

  7. #7
    Join Date
    Jul 2004
    Location
    Northern California
    Posts
    255

    question for Rachel

    Hi Rachel,

    Thanks for the post. Can I ask, how old were you when you had surgery, and how old are you now? It would be helpful to know.

    Thanks! Laura

  8. #8
    Join Date
    Oct 2003
    Posts
    9

    reply to laura

    Laura,

    I was 22 at the time of surgery. I am now 27. We had waited until I stopped growing, hoping the curve was stop its progression. It's hard to believe surgery was 5 years ago!

    I am always happy to dicuss the experience, or answer any questions you may have. Feel free to email me at rcb1977@hotmail.com.

    Rachel

    Rachel

  9. #9
    Join Date
    Aug 2004
    Location
    saginaw, mi
    Posts
    32
    my fusion extends into my L2 and does not affect any physical performance at all. I have never heard anything about the back muscle thing. I've worked out everyday for a year, chest, arms, shoulders, legs and back. this was well 2 years after my surgery when everything has healed completly. The back exercises din't hurt my back at all, and my annual check ups show no change in the curve. For back exercises i did wide grip pull ups, seated row, and another where i used dumb bells. I do a lot of dancing and has not perfected my performance much if any. Good luck, Derek

  10. #10
    Join Date
    May 2004
    Location
    Michigan
    Posts
    75
    Hi paulasue2,

    At the age of four years old, fifty years ago I had an experimental surgery on my Spine. Total fusion and no support rods or metal of any kind, I served in the United States Navy, Played in a Rock & Roll band as a drummer, played a little football, worked in numerous factories, worked as a Janitor, do you see the picture. Your daughter should do what ever she would like, continue her life as normal as possible. Dream the American Dream, inclusion is the name of the game that we all must play.
    Sure what I just read from LindaRacine and RachelCB77 does make a lot of sense, but again we were and are only young once so enjoy it. Just learn your limits, God Bless.
    Live long and prosper!

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