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Thread: More scoliosis in the family

  1. #1
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    Unhappy More scoliosis in the family

    I wasn't quite sure where to post this, but I just found out that my niece is progressing, too. She's in her mid-twenties and has two young sons to care for. I told her to google the Scoliosis Research Society to find a doctor to check after her and NOT to go to a regular orthopedic doctor, as they don't know what they are doing with regards to scoliosis.

  2. #2
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    Wow very sorry to hear that.

    Maybe she won't ever reach surgery territory.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  3. #3
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    Quote Originally Posted by Pooka1 View Post
    Wow very sorry to hear that.

    Maybe she won't ever reach surgery territory.
    I think she is already there. She was quite bad when she was a teen (but like me "looks" straight) and my sister didn't take it as seriously as I thought she should have, or maybe she just didn't want to talk about it. I don't know why? She saw what I went through. I just get the sense that my family just doesn't seem to think it's a big deal, although things are definitely changing. My mom is kind of freaked out now that surgery is looming, and she did take it seriously for me for a couple of years when she first found out. Now she (my mom) is upset over my neice progressing. My neice is hurting so badly she can't even get out of bed some days and they will only give her NSAIDS. The doctors are not taking her seriously at all. I'm so frustrated! I sent her a long e-mail. I hope she listens to her auntie. I told her maybe we can be titanium buddies! LOL I know it's not really funny, but we have to have a sense of humor, right? I also invited her to join this forum. I hope she does!

    I think what triggered my mom, at least, to take things seriously is that we have a relation through her husband that is dying from scoliosis and it's too late to do anything about. I don't think until people understand that this disorder can be FATAL, they don't give it much thought. We just kind of get booked into the whiner hypochondriac bunch. Sorry I'm venting and hurting for my neice (emotionally). Family support is SOOOO important. I guess I can't stress that enough. If anyone reading this gets anything out of this post, don't underplay what your family member is going through. Spinal deformities are painful, scary, and they change the course of your life forever. I know a lot of people work with this condition, but it sure is a lot more difficult for those who suffer with pain. Please support your families! Wow, I hope this wasn't too private!

  4. #4
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    Hi rohr
    so sorry to hear about your niece...but that is ridiculous about no pain meds...what do they expect her to do to take care of her kids...just hurt like heck all the time?

    has she tried a pain doctor....just to try to get out from under the pain long enuf to catch her breath??!! if no other doctor will take her seriously, which is outrageous, i bet a pain doctor will...at least a good one will! then she could have the strength and calm to find the right scoli doctor...it is hard to concentrate and search when one is hurting so bad...but i'm sure you know that!

    best regards
    jess

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    Quote Originally Posted by jrnyc View Post
    Hi rohr
    so sorry to hear about your niece...but that is ridiculous about no pain meds...what do they expect her to do to take care of her kids...just hurt like heck all the time?

    has she tried a pain doctor....just to try to get out from under the pain long enuf to catch her breath??!! if no other doctor will take her seriously, which is outrageous, i bet a pain doctor will...at least a good one will! then she could have the strength and calm to find the right scoli doctor...it is hard to concentrate and search when one is hurting so bad...but i'm sure you know that!

    best regards
    jess
    I just sent her a list of SRS doctors in her state. One of them is right down the road from her. She was sooooo thankful!!! So I'm pretty sure she's gonna get right on it. She must be in one of those lousy HMO's, because she said her whole doctor's office, NO ONE prescribes narcotics. I don't see how that can be the case. She works in healthcare, so I'm sure she knows what she's talking about. I hope the scoli doc can help. My pain doctor has helped me, but he insists that I don't have surgery. So I don't quite know what to think of that. Does he want to keep me comfortable until I expire? My opinion is to treat the condition. My GP has been the most help for pain control. It is so infuriating that they are treating her this way! At least she has some hope. Hope does help with pain control, when you know there is relief coming. I'll suggest a pain control doctor, though. I just don't want to see her get talked out of surgery if she needs it. She said she has developed a rib hump that is quite noticeable and her posture is terrible. I will be curious to see how bad it is. I'm just glad I can be there for her even if no one else understands, she KNOWS that I do. Thanks Jess!

  6. #6
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    Family

    I am glad your sister is getting on the right path. It is very important to realize that scoliosis and kyphosis are family related. My mother has scoliosis which was treated back in the 1930's with excersize. My mother in law had both and was never treated. She was literally bent over and this is what made us have our twin daughters have the surgery. I have small case and two other daughters have scoliosis like me and one has a small case of kyphosis as well. Please alert friends and family this can be a strong genetic problem like asthma and allergies that if both parents carry the whatever gene or chromosone it can be passed down in a more virulent way than otherwise. Also pleasse tell your sister to consult with a surgeon just in case that becomes an issue. It can be a big problem. I am amazed that professionals just don't pick this up or wait for you to ask the question that your not sure how to ask. Good Luck to her!!!!!!!!!!!

  7. #7
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    Hi rohr
    so glad that your niece has a scoli surgeon so close by! and i know what you mean about pain doctors frowning on the surgery...mine is disapproving of it...he said he sees some patients who had the surgery and he's treating them for pain after healing! i just kinda let it go in one ear and out the other...i think most of the pain doctors feel the same way......so i just suggest considering the source....
    i just no longer bring up the subject of surgery with him....and he still does my thoracic botox shots...which really help block the muscle spasms in my upper back.....

    best of luck to your niece...
    jess

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    Thanks everyone!

  9. #9
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    So sorry to hear about your niece, but it's good it seems to be helping the family break out of denial. Seems most families have something. In my original family - distinct from my sons and me - no one talks about feelings. (Except for anger, which was "allowed")

    jrnyc
    that is ridiculous about no pain meds...what do they expect her to do to take care of her kids...just hurt like heck all the time?
    A question about narcotics.

    I barely got off a humongous dose of hydrocodone in a self detox in June. (Anything else made me too sleepy and the 12 hr pills weren't covered by my - lousy - Blue Cross med plan anyhow).

    Until my neurologist entered the pain mgmt picture (and prescribed more liberally) I had to spread out my narcotic usage a lot. I was lucky if I had one a day, which I took in the AM. I found that the short acting pills had a slightly euphoric effect while I took them, and then I crashed after they wore off, day after day.

    It created almost a bipolar effect, which had a TERRIBLE effect on my poor kids (Mom was happy in the morning, depressed and crabby at night) Anyone else have/had this problem? If you're getting meds from an understanding doctor probably you won't have had to space them out leading to this effect, but it's really a hazard mothering children.

    The bouncing in my morale (and pain level) wasn't within my control. Too many doctors are so hung up on addiction, they forget about the risks of under-medication. What's worse, when they're treating a mother they're treating the whole family.
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  10. #10
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    i do not have a problem getting pain meds from my pain management doctor.....he believes that pain exists and is aware of how bad it can get with scoli/degenerative disc/arthritis/spinal stenosis!
    i wish all patients in pain could have a doctor like him...for the faults he does have ("surgery...why would you want to do that!?") he has alot of good qualities..like not giving up on a patient's pain...

    jess

  11. #11
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    I'm on a pain patch that delivers 24/7, so I don't have the up's and down's of fast acting narcotics. I have percocet for breakthrough pain but can only use 3 per day because of the stronger patch. That is why I am posting at 5 a.m., my percocet never kicked in... I will just take my morning klonopin early. Thought the percocet was kicking in on a different post about a half hour ago, but the back pain is winning out. Good night/morning all!

  12. #12
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    It's interesting to find someone else who is in pain with Scoliosis. That's the whole reason we took my daughter to the dr. to begin with. They sent her to a specialist and he said there is NO PAIN with scoliosis. My thoughts on the matter is if you back is twisting into a pretzel and all the tendons, muscles are stretching how could there not be pain? I hope everything works out for you and her and she gets help soon.

  13. #13
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    Quote Originally Posted by Ronda View Post
    It's interesting to find someone else who is in pain with Scoliosis. That's the whole reason we took my daughter to the dr. to begin with. They sent her to a specialist and he said there is NO PAIN with scoliosis. My thoughts on the matter is if you back is twisting into a pretzel and all the tendons, muscles are stretching how could there not be pain? I hope everything works out for you and her and she gets help soon.
    That's the whole reason my mom took me to the doctor as a teen. The only thing they found was the scoliosis and said it didn't hurt. What do they know? They don't live in our bodies! It makes me very angry when I hear that. Maybe it doesn't hurt everyone, but there is a good portion of us that suffer terribly. I'm still looking for help. Thank you for the good wishes. Don't ever stop believing your daughter. The pain is real and, sad to say the older I get the longer the intense episodes last. They truly are a 10 out of 10 on the pain scale. All of my other doctors believe me, just not the scoli doctors. Doesn't make any sense at all!

  14. #14
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    It's idiotic and inhumane to say categorically there's no pain with scoliosis.

    I think what's obfuscating the picture is that many young teens with scoliosis (indeed, I was one of them) do NOT have pain - especially, if they're active. One surgeon explained to me it has a lot to do with differences in pain receptors and body chemistry at that age.

    But a fledgling surgeon who has encountered such patients may conclude that's the way it is for everyone.

    Everybody's body is different, though - not just from age, arthritis (and other secondary spinal conditions), rotation and so on - but MOST OF ALL from how far from plumb their stance is laterally and sidewise (sagittal plane).

    Speaking as an artist who spent a lot of time studying anatomy and center of balance, there's NO way for anyone to avoid pain if they're significantly knocked off their axis and fighting to remain upright.

    If you draw a line from the top of the nead to between the feet where they land on the ground, the deviations in the spine will even predict where you'll hurt for the most part (rotation makes it more complex).

    I did that with my Xray (extrapolating what wasn't shown), and found that at the top and bottom of the curves (ie in between was space where there should have been vertebral support), was exactly where I felt the most pain. There's a line going through nothingness and the curved parts supporting that space are doing an enormous amount of extra weight bearing.

    On top of this, of course, are nerve impningements, rotational stress and outright tipping. Unless we happen to have compensating curves which more or less remain centered (and they aren't too large), we are fighting gravity as a mortal enemy all the time.

    This is not just painful, but exhausting. No wonder scoliosis patients are extra tired all the time - that and how much more difficult (and slower) most simple actions become!

    That doctor should be plopped into a scoliotic body for twenty four hours and see how he changes his tune! (hope he'd become more humble too!) Meanwhile, great! So, the minority of young patients who have thus far remained pain free are "right" and all the rest of us are imagining our pain - NOT! I suppose I use a walker just for fun! It's so terrific for my self-image.

    Fortunately, most good surgeons (and physiatrists all the more) do NOT think any such thing. After all, since pain is the primary reason for surgery, there would otherwise be no reason to operate. FTR pain even shows up on Pet Scans.

    In sum, what an ignorant, insensitive jerk!
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  15. #15
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    Back-out,

    I don't know how I missed your post so long ago. It has been my experience that the ONLY doctor that has believed that scoliosis is painful is the Dr. in N.C. that I am thinking about seeing. For my entire life ALL the scoli docs have said that my pain is not scoli related, but NONE could give me an answer to what was causing the spine and muscle pain I felt.

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