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Thread: Family scoliosis

  1. #1
    Join Date
    Aug 2012
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    Moldova/Romania, Chisinau
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    Family scoliosis

    I(24y male) am quite sure my scoliosis got somehow inherited, as my mother also has this affliction. She had ~3 surgeries back in the seventies in USSR. It was a Harrington rod I think. First she had lumbar surgery(probably fusion). Then she had a second thoracic surgery with instrumentation. Then she got into a cast brace for a year. She had a very difficult recovery period.(Nagging mother and bullying sister+ plaster) By then she got an infection near that thing(implant) and the doctors removed the rod. She complained of extreme pain, maybe the medications didn't work? After my birth her back pain persisted in a rather intense form. She also had rather freaky scars(which got better over time). The sad part is she was scaring me that if I didn't do my exercises and swim very well I'll end up with scars like her. I think there are quite a lot of scoliosis patients who required very serious psychological/psychiatrical help, yet didn't get it. So my mother hates doctors, says they are all liars, and want to press for surgery for the money. More, she claims that there are a lot of paralyzed people because of such surgeries.(I have actually read that not doing surgery can in some cases cause paralysis) Unfortunately she decided to coach my physical therapy exercises herself and having psychological scars she was making the exercises seem like burden, not like something fun or useful. I think it might have been better to find a PT group for children... But my mother says that she continues to have constant rather intense pain. Yet she doesn't want to have it checked, saying it won't help, its all because of the surgeries. Is this normal to have pain in the fused vertebrae? I've chosen to write this in the family section so that maybe I could get some insight into such family scoliosis related problems.
    Last edited by Delta107; 06-14-2013 at 02:29 PM.

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,959
    Hi Delta...

    It's not terribly uncommon for someone with scoliosis surgery to have a lot of pain. There's almost certainly something wrong, but you're not giving us enough information to know what that might be. The most common problem is degeneration in the vertebrae that weren't fused.

    I'm concerned about your mother guiding your PT exercises, and seriously doubt that any exercises she's giving you have any impact on your scoliosis (assuming she is not a certified and licensed physical therapist).

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  3. #3
    Join Date
    May 2008
    Location
    reno,nevada
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    3,979
    You mother did all of this during the Ceausescu era, which were difficult times in Romania. I think that she had a hard time as many of us do, even harder due to the fact that it was many years ago.....Things have improved quite a bit through the years with scoliosis, the Harrington rod is a thing of the past, these systems should not be used anymore, in any country, on anybodyís spine. Its what was available at that time.

    Recovery during the power shutdowns and heating oil cutbacks during that era would make things especially hard. I couldnít imagine having to have to wait in line, in the winter for many hours, for a loaf of bread being in major pain that scoliosis can create...... Your mother is a trooper. She is a survivor.

    Scoliosis runs in families. It happens and we donít know why. My father had a thoracic scoliosis but never mentioned it. I found out reading through his hospital reports after he passed away.....Some can live with scoliosis pain, and some cannot. Some need surgery and some do not.

    Doctors become doctors to help people......They donít become doctors because they want to make money.....If you want to make money, there are much easier ways to do this. Becoming a surgeon takes a lot of dedication, training, and hard work and it takes many years to get to this point. Sure, one can assign blame, but the good intent is there.....These surgeons that worked on your mother did the best that they could. I want you to understand this.

    Exercise is a good thing for everyone. Targeted exercise for scoliosis is something that needs special training. These people that do this are experts and have studied this specifically, and even still NOT a guarantee that it will prevent progression, this being something that even the scientists of the world have no conclusions on. We can only hope that an answer can happen at some point in time. If the scientific community of the world cannot figure this extremely complex problem out, an untrained layman is far from knowing what to do. Exercise is no guarantee that you can avoid scoliosis surgery.

    Pain is a difficult subject. It can be caused by many things. After scoliosis surgery, a non-union can be painful, nerves can be inflamed, muscles can spasm. You can have a non-spinal related problem and it can trigger MAJOR spinal muscular pain. Pain after revision surgeries, or multiple surgeries can happen especially when scar tissue is involved. Its tricky operating on the same area twice. Degeneration is painful....and happens to just about everyone at some point.

    Hot water soaks can help with pain. Itís one of the easiest ways to help calm down back pain.

    Go ahead and read this to your mother....is she has any questions go ahead and post them....

    Ed
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  4. #4
    Join Date
    Aug 2012
    Location
    Moldova/Romania, Chisinau
    Posts
    43
    Quote Originally Posted by LindaRacine View Post
    Hi Delta...

    It's not terribly uncommon for someone with scoliosis surgery to have a lot of pain. There's almost certainly something wrong, but you're not giving us enough information to know what that might be. The most common problem is degeneration in the vertebrae that weren't fused.

    I'm concerned about your mother guiding your PT exercises, and seriously doubt that any exercises she's giving you have any impact on your scoliosis (assuming she is not a certified and licensed physical therapist).

    Regards,
    Linda
    Well doesn't do that anymore, I am an adult. But I don't have any more information, she didn't say more. She is afraid of doctors... They created her so much pain... I really don't know how to convince her to have it checked. But if she might need another surgery she simply won't do it.

  5. #5
    Join Date
    Aug 2012
    Location
    Moldova/Romania, Chisinau
    Posts
    43
    Quote Originally Posted by titaniumed View Post
    You mother did all of this during the Ceausescu era, which were difficult times in Romania. I think that she had a hard time as many of us do, even harder due to the fact that it was many years ago.....Things have improved quite a bit through the years with scoliosis, the Harrington rod is a thing of the past, these systems should not be used anymore, in any country, on anybody’s spine. Its what was available at that time.

    Recovery during the power shutdowns and heating oil cutbacks during that era would make things especially hard. I couldn’t imagine having to have to wait in line, in the winter for many hours, for a loaf of bread being in major pain that scoliosis can create...... Your mother is a trooper. She is a survivor.

    Scoliosis runs in families. It happens and we don’t know why. My father had a thoracic scoliosis but never mentioned it. I found out reading through his hospital reports after he passed away.....Some can live with scoliosis pain, and some cannot. Some need surgery and some do not.

    Doctors become doctors to help people......They don’t become doctors because they want to make money.....If you want to make money, there are much easier ways to do this. Becoming a surgeon takes a lot of dedication, training, and hard work and it takes many years to get to this point. Sure, one can assign blame, but the good intent is there.....These surgeons that worked on your mother did the best that they could. I want you to understand this.

    Exercise is a good thing for everyone. Targeted exercise for scoliosis is something that needs special training. These people that do this are experts and have studied this specifically, and even still NOT a guarantee that it will prevent progression, this being something that even the scientists of the world have no conclusions on. We can only hope that an answer can happen at some point in time. If the scientific community of the world cannot figure this extremely complex problem out, an untrained layman is far from knowing what to do. Exercise is no guarantee that you can avoid scoliosis surgery.

    Pain is a difficult subject. It can be caused by many things. After scoliosis surgery, a non-union can be painful, nerves can be inflamed, muscles can spasm. You can have a non-spinal related problem and it can trigger MAJOR spinal muscular pain. Pain after revision surgeries, or multiple surgeries can happen especially when scar tissue is involved. Its tricky operating on the same area twice. Degeneration is painful....and happens to just about everyone at some point.

    Hot water soaks can help with pain. It’s one of the easiest ways to help calm down back pain.

    Go ahead and read this to your mother....is she has any questions go ahead and post them....

    Ed
    Actually she was operated in Moscow then she came back home to Chisinau(by train.....), but yes it was the same old tech... Thanks for answering.

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