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Thread: 18 years out of my brace

  1. #1
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    Question 18 years out of my brace

    I'm 35 and wore a boston brace for 6 years (thru my Sr. year in high school).

    Maybe it was wishful thinking or the innocence of youth, but I never gave my back much more thought. I knew it was curved and would stay that way for the rest of my life (I have an 's' curve), but life goes on.

    I got married, had two reasonably uneventful pregnancies and have gotten used to the nagging ache in my back, but in the couple of years it's been getting worse. I get occassional massages to work out the humps and lumps caused by the distortion, but I just recently decided enough was enough.

    I have an appt. next week with a doctor who specializes in Adult Scoliosis to see what he recommends. I haven't had any xrays since 1987 that were specific to my back except for one a month ago to check for pneumonia and, to me, my upper curve looked far worse than it used to be.

    Has anyone else had similar experiences? I'm both excited and a little apprehensive about my appt next week and any tips or hints on what to ask or expect would be greatly appreciated.

  2. #2
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    Hi Michelle...

    Good for you for taking action. Contrary to what the medical profession thought back when you were treated with the brace, curvatures can continue to progress in adulthood. Your curves may have increased, or it may just be that you're getting older. :-) Studies have shown that 80% of all adults have back aches at least occasionally.

    If there's any way to get a copy of your records and/or x-rays, I'd encourage you to try to do that. It can be really helpful to the doctor.

    Good luck with your appointment.

    Regards,
    Linda

  3. #3
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    Hi Michelle!

    My situation is sort of similar. I was diagnosed with scoliosis when I was 12. I had x-rays done and my curve was around 15 degrees, which isn't a big deal. I kept getting x-rays every six months until I was 16. The doctor said I was done growing and my curve measured 18 degrees and I wouldn't have to worry about it getting worse. When I was 19, I was starting to have really bad back pain, but didn't really think anything of it. In December 2002, it was almost unbearable. So I decided to visit an orthopedic surgeon. He took x-rays and I was in shock when I saw them. My curve had moved from 18 to 33 degrees. It nearly doubled in 4 years. My doctor didn't seem too concerned, but he recommended physical therapy for the pain (it didn't help at all and cost way too much). He gave a prescription for stronger Ibprofen, which I never filled. He told me to come back if the pain continued. That was March of 2003. I went back in May for pain. He gave me a cortisone shot, which didn't help at all and told me to come back next March for more x-rays. He also told me he would do surgery if it continued to progress.

    I'm still in a lot of pain, but I guess I just have to live with it for now. Sometimes I get so depressed because I feel like I can't tolerate this pain for the rest of my life. I have an appointment for more x-rays February 26th and I can't wait to find out if my curve has moved in the past year.

    I hope your curve hasn't progressed. If it has and you're in a lot of pain, hopefully your doctor can do something for you. Do you know what your curve was the last time you had it measured?

    Good luck!

    Michelle

  4. #4
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    I, too, have experienced an increase in my curves (from 27/23 at age 28 to 33/25 at age 43). I see a spinal specialist at Yale periodically, but the thing that really upsets and depresses me is knowing in advance that the doctor can't really do anything to help me. My curves are not (and, God willing, will not become) significant enough to warrant surgery, but I definitely have felt (during the past year in particular) that my torso is gradually "sinking" and I have to concentrate very hard on holding myself upright to try to counteract this. I've been used to that tingling, nagging pain in my thoracic region for years, but a weird new development I've been experiencing is pain on the left side of my waist which almost feels like a stinging sensation. I am planning on getting Elise Browning Miller's tape on yoga for scoliosis, which I hope will help with the discomfort. It would be very cool if somebody, somewhere could come up with a cure for this condition. It helps me tremendously to be able to come to this board for advice and support.

  5. #5
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    First, thank you both so much for the advice.

    Linda, I've contacted my old HMO and found out I can get my records but it will take 10-15 business days and my appt is Tuesday, but I'm still going to do it so the Dr. can have something to reference. It's also interesting what you said about the curve progressing because as I read through the forums about curves getting worse, my very first thought was "Hey, thats not what they told me."

    Briarrose (love that SN) - hang in there. I find a good deep tissue massage helps when my back pain gets out of control. A good sports massage therapist can really work out my contorted muscles and leave me feeling a lot better. If you're in a lot of pain, it certainly couldn't hurt to try.

    As for my prior curves... when I was initially diagnosed, my upper curve (which goes left to right) was 19 degrees and my lower (which goes front to back <sway back>) was in the high 20's, but I don't remember exactly. They tried various exercises and physical therapy and when the decision was made to brace me (seems like it was only a matter of a few months) both had worsened at a rate they didn't like.

    My last xrays before I finally got the ok to stop wearing it were 24 degrees upper, 37 degrees lower (as best as I can remember anyway). I have a very clear memory of them marking 24 on the upper curve of the xray and the lower was in the mid-high 30s, and I *think* it was 36-37.

    I'm feeling pretty good about having made the appt (I'm terrible about it) and my mom is happy that I'm having it checked. She told me yesterday that she's sure it has worsened or changed because I stand different than I used to - and not in a good way.

    Best of luck at your appt next month - I can't imagine having to wait that long. I'm glad they were able to get me in so quickly because now that I've taken the step and made the appt, I'm eager to find out what two pregnancies and 18 years have done.

  6. #6
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    I know what you mean Erica - it can be frustrating. I tend to be a very laid back person, but occassionally little things get to me. I'm so glad to have found these boards to. When I was diagnosed there really wasn't anyone to talk to and my only comfort was Judy Blumes book "Deenie". Reading it saved my sanity because I everything Deenie felt - I had too.

    Thank heavens for the age of the internet. :-)

  7. #7
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    Michelle...

    I don't know if it would be of any help, but last Fall, I had to get a copy of some hospital records. I was told that they needed at least two weeks to produce them. I told them that I didn't have a choice, that I was being admitted to another hospital. They allowed me to go the hospital in person and wait while they made a copy.

    Regards,
    Linda

  8. #8
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    Oh, I loved "Deenie," too!

  9. #9
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    thanks Linda

    I had my appt today and it went really well, despite them not having my old records (15 working days). I actually think I'm going to call and have them sent to my Primary care doctor instead, unless something major happens, I won't see the specialist again for a few years.

    After 18 years my back was in the same shape (as best as I can remember) that it was then... 24 thoratic, 36 lumar. The increased pain is coming from disk degeneration, so I'm headed to physical therapy to learn some stretches and exercises to see if they help.

    I'm going to have my family doc keep me in check though - she's wonderful and I trust her to keep me in line (so to speak).

    Oh...and Erin... isn't Deenie great? I think I'm going to reread it, just because it's been a while.

  10. #10
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    Michelle,

    I'm glad your curves stayed the same, even though degenerative disc doesn't sound like fun. I hope the physical therapy works for you. Are there any other possible treatments?

    I'll have to read that book. I've heard a lot about it.

    I hope you have a pain free day!

    Michelle Owens

  11. #11
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    I haven't read "Deenie" in years, but the part I remember most vividly is how her mom, after being in denial about the scoliosis, breaks down and cries while she's holding Deenie. Since I'm a mom now myself (with two daughters whose spines I monitor like a hawk), just thinking of it brings tears to my eyes.

  12. #12
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    Everything about Deenie hit home with me - but yes Erica, I totally agree - the scene with the mom crying was powerful. I've always said my mom had a much harder time with me being in a brace than I did.

    I'm a mom now too - two boys - and I watch their backs like a hawk too ;-)

    ...

    Michelle, definitly pick up a copy of Deenie - you'll love it. Judy Blumes stuff is timeless. My upper curve is acheing today and I'm about to resort to some pain meds to give me some relief. I need to go do some reading on the disk problems and I'm hoping when I start PT they'll give me some clues on how to relieve some of the pressure. Normally its not bad, but I slept with my sick youngest last night and I don't think I was in a real good position.

  13. #13
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    What kind of pain medicine do you take? So far, nothing I've tried has helped (prescription Naprosyn, prescription Ibuprofen, Tylenol).

  14. #14
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    Rx ibuprofen... I have a very high pain tolerance so thats usually all it takes. If it keeps up, then I schedule a deep tissue massage which relieves a lot of the tension and seems to give me some relief.

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