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Thread: Should I be worried?

  1. #1
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    Should I be worried?

    Hello all,

    I will be happy to provide more information if needed, but I'll try to keep my intro brief.

    I am a 44, soon to be 45, female. My left lumbar scoliosis was discovered very early. I started PT and monitoring at 12 degrees. I was braced (Boston) at 18 degrees and finished bracing at 18 degrees. Success!

    During the 80s I never heard the words "rotation" or "imbalance". I have no measurements but I do have rotation and my head has never been over my feet.

    I started having disc problems with both back pain and leg numbness in 2010. I see a regular orthopedist, not a scoliosis specialist. My doctor does feel the curve contributed to the overall degeneration. (He described my spine as a 70-year-old lady's spine.) At that time (January 2010), my curve was still only 22 degrees. I have used nerve blocks, PT, and OTC meds handle the pain.

    This fall the pain returned with an intensity and I felt ... unstable. I am sure I felt my lower spine wobble several times.

    X-rays in January 2016 showed a 42 degree curve with a new (very small) compensating curve. Unfortunately I have no X-rays between 2010 and 2016.

    My orthopedic doctor prescribed Schroth PT. I declined a 3rd nerve block. I return in a few weeks for a follow-up.

    So ... should I be worried? Because I am worried. Maybe I'm too worried. I never expected my curve to change that much. Is it possible for a curve to progress and then stabilize in adults?

    Thank you!

  2. #2
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    Hi and welcome.

    I really hope some of the adult patients chime in.

    Did they tell you what kind of scoliosis you have? It seems to me you likely do not have idiopathic scoliosis (IS) but rather an early case of degenerative scoliosis and degenerative disc disease (DDD). I know a woman who was in that category... very early onset DDD though I don't think she has much of a curve, just the disc damage as a young adult.

    One reason I think you do not have IS is because that would be breath-taking and completely against the paradigm if you went from 18* at skeletal maturity to 42* now. Eighteen degrees is considered protective against future progression to surgical range which you are not in Cobb angle-wise but may be in DDD-wise. Eighteen degree is even below the bracing range so I am a little surprised you were braced then. And because you were braced, if you do have IS and you are eventually fused, that would have to count as a bracing failure despite all appearances to the contrary to this point. It is very sobering to realize that the BrAIST study declared victory with a 49* or lower curve with no more than 25% growth remaining. If you were in that study you would have been counted as a "success." And yet there you are in great pain with a 42* curve. Essentially these bracing studies that don't have decades of follow up may not be as valuable as they seem.

    I think you need to consult an adult deformity specialist with much experience in spine.

    Good luck.
    Last edited by Pooka1; 03-02-2016 at 11:29 PM.
    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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    I would see a “scoliosis surgeon”..... “regular” non scoliosis trained orthopedics are not your best choice in your condition. And I would NEVER, EVER let a regular orthopedic operate on my spine. No way, Jose...

    The SRS has a physician locator...

    http://www.srs.org/

    http://www.srs.org/find/disclaimer.php

    Just because you see a scoliosis surgeon doesn’t mean you are having surgery. No surgeon with any integrity should push any scoli into surgery. You just go in and talk. That’s how it starts.....

    They also prescribe the “correct” medications for our problems....I have seen this and have been amazed....NSAID’s are usually prescribed, and do work well.

    Medical science has come a long way since the 1980’s.....

    Welcome to the forum Spitfire!

    Ed
    49 yr old male, now 58, the new 53...
    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
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    Thank you!

    Thanks Sharon and Ed! I feel a little like a party-crasher coming to a forum like this and saying I was braced at 18 degrees.

    I knew the bracing story would raise questions and I really don't have answers. I was 12 or 13. I know my parents didn't push for it. We knew nothing.

    Here is what I remember. When I was 11, my mom noticed that my jean pockets were uneven. The curve was only 12 degrees. After hand X-rays to determine my bone age and a full body scan with radioactive dye to look for tumors, I reported back every 3 months for follow-up X-rays. (I don't think I've reached 100 X-rays yet, but I must be close.) During one 3-month period, my curve changed from 12 degrees to 18 degrees. I remember the doctor telling my mom that there was no point in waiting. We measured for a brace that day. (We lived far from the scoliosis practice.) For all I know, I may have been included in a study. I know the clinic had a teaching program because every visit I had the privilege of stripping down to my panties and standing in front of a group of very young men with clipboards. When I stopped growing and the doctor released me from the brace, I SWORE I'd never be back.

    Edited to add: A few years after I completed bracing, my first cousin had scoliosis surgery for a 60 degree curve discovered at age 16. That made the brace feel like a small sacrifice. I truly felt like I had dodged a bullet.

    I have always thought that I look much worse on the outside than the inside. 18 or even 22 degrees should be nothing! I don't know that my rotation is severe, but it may be disproportionate to my small curve. Again, I have no official measurements, but comparing pictures to my 2010 X-rays, it looks like grade 2. (I'm not a professional!) My lower back resembles a steel cable beside a ditch. One hip is almost even with my ribs while the other juts out several inches. I've had several people point out that I lean heavily when I walk. (Thanks, Captain Obvious.) The only positive thing about the recent changes is that I don't lean as much now. I guess a compensating curve helps that. I should have known something was amiss when I took a speech class last summer and was not dinged for leaning or askew clothing.

    I don't know that my curve would have progressed on its own. I do think the DDD spurred the progression. But I also think the curve spurred the DDD. I definitely agree that we need studies over longer periods of time.

    Ed - I'm trying to be patient which is not my forte! My husband is a biomedical engineer specializing in, of all things, the lumbar spine. He is very opposed to surgery but thinks highly of the Washington University team in St. Louis (5hrs away) and has worked closely with an adult deformity surgeon in Chattanooga (8 hrs away). My orthopedic doctor told us that if I'm not better by the end of March, he will request an MRI. Once I have the new X-rays + a new MRI, it will be easier to request consultations with distant doctors.
    Last edited by spitfire; 03-03-2016 at 10:45 AM.

  5. #5
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    Hi Spitfire. You are a very interesting case if I might say so. :-)

    Can you post your 2010 radiographs? Are they digital?

    If you have rotation then that is idiopathic scoliosis, not adult scoliosis associated with DDD as I understand it. Maybe Linda will comment.

    If you were 18* at skeletal maturity with IS and then progressed to the 40s, that is definitely off the reservation. I think it is generally accepted that if you can be 30* or less at skeletal maturity, you are not likely to ever need fusion for progression. But if a large percentage of these people with small curves end up getting fusion for DDD and pain then focusing on progression only is ridiculous.

    I know with my daughters that we were under the impression that if they could be below 50* at skeletal maturity then they would escape fusion for life. My naïveté at that time was off the scale I have come to learn.
    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."

  6. #6
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    IMG00000.jpgIMG00000.jpg

    I hope this works.

    I apologize for the pics of my itty-bitty baby curve. Please, don't hate me.

    These were taken in January 2010 during my first visit to an orthopedist since high school. I was experiencing lower back pain (left), numb toes/foot (left), and excruciating hip pain (left). I finally saw a doctor after I fell in front of my husband and he made me go. This x-ray wasn't intended to look for or measure scoliosis. My doctor was focused on the source of my pain. (MRI showed a disc bulge at L4/L5). I was very relieved that my curve looked pretty much the way I remembered it. Later I printed the x-ray and used a ruler and protractor to measure the angle. I thought it was around 22 which would be about right for 18 degrees in high school. Someone with experience may get a different measurement.

    I can see that there is obviously some rotation there, but no medical professional has ever quantified it. With a curve so small, I don't think it really mattered to anyone.

  7. #7
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    Thanks Spitfire for posting those.

    Can you also post the radiographs from Jan 2016 showing the 42 degree curve?
    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."

  8. #8
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    I will as soon as I have a copy. Since my doctor mentioned another MRI, I planned to wait until those results and request all my records at once. The new ones include a full chin-to-hip X-ray. (The Schroth therapist was unhappy with the short lumbar X-rays and marched me back to the machine for a "real" X-ray.)

    Please don't let my case upset you when thinking about your daughters. I may just be an anomaly. I still think I may have injured something this fall. I really expected the doctor to find a pars fracture and/or spondylolisthesis. The doctor didn't find anything but had a hard time getting a clear side-view X-ray. The techs had to try several times and finally positioned the camera at an angle to see L4 and L5. The curve quickly became the focus of the visit.

  9. #9
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    Spitfire, my twin daughters were fused, one in 2008 and one in 2009. They were both surgical cases.
    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."

  10. #10
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    I am surprised that since 2010, you have not taken any “prescribed” NSAID’s ? Didn’t any of your doctors bring this up? Celebrex, Diclofenac, Etc.....GP’s used to hand out Celebrex like candy years ago, especially for herniated discs.

    https://en.wikipedia.org/wiki/Nonste...lammatory_drug

    These are great at putting the fire out.

    Just in case this comes up, as far as surgery is concerned, I still wouldn’t submit to a single level fusion on that L4-L5 level unless you see a scoliosis surgeon. I would also like to have at least 2 scoliosis surgeons in agreement on something like this since there are cases like this that have acted as a catalyst’s for progression. After reading thousands of scoliosis testimonials over the years, I have seen these testimonials and remember them. Scoliosis surgeons are the only ones trained at sagittal balance, and this is extremely important in scoliosis patients. Regular Orthopedics have no training on this, but will fuse a level or two...(It pays well, and so do the shots) Be careful. Remember that you do the hiring and firing.

    I always like to believe that we “actually do heal”. These words have me almost at a crossroads, since I have passed and failed miserably. And I still believe this to this day, and it is worth trying or implementing with the right course of action. Beating herniated discs is possible. They do retract. Its not easy, but its possible. I have always curtailed my physical activity, and have rested when in trouble. Along with plenty of hot soaks, floating in deep tubs. Massage is also a good thing....I have found that massage immediately after a 30min hot soak makes the massage more effective. I don’t know why, but it does. It became one of my very expensive habits. (Years ago)

    I also like to believe that surgery in Adults is a last ditch effort......Pain forces decision. Sometimes this isn’t possible, and we have no choice.

    I guess that makes me a believer....(smiley face)

    Believing and having a positive attitude keeps the worrying to a minimum.....

    Ed
    49 yr old male, now 58, the new 53...
    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

  11. #11
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    Quote Originally Posted by Pooka1 View Post

    If you have rotation then that is idiopathic scoliosis, not adult scoliosis associated with DDD as I understand it. Maybe Linda will comment.
    First, adult idiopathic scoliosis usually refers to people who have AIS, but are no longer adolescents/teens. They have rotation at about the same rate as adolescents. Degenerative scoliosis definitely is rotational. Here's an image of a typical degenerative scoliosis. You can see that there's definitely rotation.

    http://www.eorthopod.com/sites/defau...coliosis02.jpg

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
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    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
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  12. #12
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    Quote Originally Posted by titaniumed View Post
    Just in case this comes up, as far as surgery is concerned, I still wouldn’t submit to a single level fusion on that L4-L5 level unless you see a scoliosis surgeon. I would also like to have at least 2 scoliosis surgeons in agreement on something like this since there are cases like this that have acted as a catalyst’s for progression. After reading thousands of scoliosis testimonials over the years, I have seen these testimonials and remember them. Scoliosis surgeons are the only ones trained at sagittal balance, and this is extremely important in scoliosis patients. Regular Orthopedics have no training on this, but will fuse a level or two...(It pays well, and so do the shots) Be careful. Remember that you do the hiring and firing.
    I agree with this! There are some folks here who say that a 1-2 level fusion started a cascade wherein they ended up with much of their spine fused. I have always wanted to ask Linda if that was possible but guess if it compromises the balance as Ed mentioned, then maybe it is possible.

    Maybe Linda can confirm but I think I read that is these 1-2 level fusions for pain are the most OVER-used surgery and a majority of patients end up with more pain than before the surgery. Also, I think PT has been shown to be better but I certainly don't know that about specific cases of even the class of cases... only a surgeon experienced in this would know. I would need several concurring opinions all from experienced guys before I agreed to this. And I would want to see the data myself. :-)
    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."

  13. #13
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    Quote Originally Posted by LindaRacine View Post
    First, adult idiopathic scoliosis usually refers to people who have AIS, but are no longer adolescents/teens. They have rotation at about the same rate as adolescents. Degenerative scoliosis definitely is rotational. Here's an image of a typical degenerative scoliosis. You can see that there's definitely rotation.

    http://www.eorthopod.com/sites/defau...coliosis02.jpg

    --Linda
    Okay thanks. That lumbar does not appear to be rotated at all to me. Look at how the peaks at the back all line up. What am I missing?
    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."

  14. #14
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    This article discusses the two types of adult scoliosis. It seems like Spitfire fits better into adult degenerative but because she had the curve from when she was young, it is by definition adult idiopathic. Very confusing!

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4068860/

    Rotatory deformity is observed in the entire lumbar spine in adult idiopathic scoliosis, whereas it is limited at the apex of the curve in adult degenerative scoliosis, accompanied with lateral subluxation. Finally sagittal imbalance is more common in degenerative scoliosis
    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."

  15. #15
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    Quote Originally Posted by Pooka1 View Post
    This article discusses the two types of adult scoliosis. It seems like Spitfire fits better into adult degenerative but because she had the curve from when she was young, it is by definition adult idiopathic. Very confusing!

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4068860/
    Very confusing - I agree! I'Ve tried to do some research but neither category seems to fit. I've seen some articles that use the label "adult idiopathic scoliosis with degenerative changes". That's a good description if not an official label.

    Now I wish I had the new X-ray since we have this great discussion going. My next appt is March 24th.

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