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Thread: My Scoliosis Story, (so far)....

  1. #1
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    My Scoliosis Story, (so far)....

    Hi everyone!

    My name is Michelle, I'm 37 years old, and I was diagnosed with scoliosis at the age of 21. However, I knew I had scoliosis when I was 9 years old, thanks to Judy Blume's book 'Deenie'. As I read the book, my heart sank because I realized that my body looked the same as Deenies' did. Even so, I grew up in a very religious home, and my dad didn't believe in doctors. So my condition was ignored my entire childhood, even though many of my Aunts and Uncles tried to change my dad's mind. I went on with life, and didn't think about it again until I was 21.

    age 21 (diagnosis) 2001 - 28 degrees lumbar, and 32 thoracic.
    age 30 (recheck) 2010 - 40*lumbar, 51*main thoracic, and 33* upper thoracic.

    My diagnosis and recheck were done by 2 different doctors, because I lived in different states. The doc from my original diagnosis said I was borderline for needing surgery, and that if my curves progressed at all, then I'd need surgery down the road. The other specialist I saw in 2010, said he didn't recommend surgery at all, even though my curves had progressed. He recommended PT, which I ended up not doing because my insurance wasn't great, and I couldn't afford out of pocket costs. This is currently the last recheck I've had.

    Fast forward to the present: The past month, just shortly after Christmas, I've been having constant nerve pain, and tingling in my back and neck. Add that to the moderate pain I've always had from my scoliosis, and I'd say this is the worst pain I've felt. My husband has taken over household chores, and cooking because I can't do those right now.

    So I've scheduled an appointment with Washington University in St Louis MO. (We live in southern IL, just 30 mins away.) At first, the receptionist was going to schedule me with a surgical consult with Dr Buchowski. I was like, no, no.....I don't want to waste his time, at least right now. I just need a recheck of my curvature, and want to see if PT is the way to go first. So I was transferred to the Orthopedic Physiatry dept. They'll do X-rays and whatever other tests are needed, and then see if PT is an option. If I do PT, and it doesn't help any of my symptoms, then they will have me do a surgical consult. I have great insurance now, so I'm looking forward to trying PT. Only downfall is my appointment isn't until April. Sigh! That's a long wait.

    Sorry for the long post! I look forward to getting to know all of you.

    Michelle

  2. #2
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    51ļ and not recommending surgery? And even thoracic? Is difficult to believe for me, in my country, I may say in all South America and some countries of Europe as Spain, surely is not possible to find a surgeon not recommending surgery with a thoracic curve > 50ļ. I may say you that you are lucky, may I ask you the name of your surgeon? You may send me a PM.
    About non surgical treatments I would recommend you Gpr if you are in pain or want to achieve flexibility, but of course you have a lot of options in your country.

  3. #3
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    Michelle it is hard t wait when we make up our minds to seek help. A surgical consult can lead to other treatment than surgery. I do think that Dr can give you good advice so don't be afraid of his opinion. Actually seek several.
    Exercise can keep things in check for awhile but remember PT ends but you need to keep it up.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  4. #4
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    If you have 51 or more, except you see again the same surgeon, you may be sure that he will recommend you fusion, except if he is a Vbt surgeon and proabably also one doing Vbt in adults. If you are decided to have fusion, there will not be any problem to see a surgeon.. Remember that fusion is for ever and ALWAYS have a negative side regardless the surgeon doing it.
    Last edited by flerc; 01-31-2017 at 03:59 PM.

  5. #5
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    Quote Originally Posted by flerc View Post
    Remember that fusion is for ever and ALWAYS have a negative side regardless the surgeon doing it.
    You sound like a chiropracter.
    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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    Hi Michelle,

    I am a similar case to you. (59T,49L , 49UT) However I am a bit older. It looks as if your curves, although technically at surgical levels, are balanced. Like me you have 3 curves and I expect that your head is more on less on top of your pelvis ( balance wise). This is part of what surgeons consider.

    50% degrees is a threshold for surgery but unlike what Flerc asserts - it is not a simple cut-off. Other things figure as I am sure you will find out. This puts you in a difficult position. You have significant pain which surgery is not guaranteed to reduce. If you progress significantly I expect surgery may well be offered. I do a lot of PT to keep on top of the pain. It obviously does not affect progression or rotation in any significant way but it keeps me going.

    Let us know how you get on

  7. #7
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    Hi Michelle. Burdle is in your shoes and is very knowledgeable.

    Please ignore flerc. He has no experience with this and is giving you incorrect information. This has been going on for years.
    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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    Michelle, if you read some of her thousands of posts here you will realize (as tons of people leaving this forum for ever because her attacks), that she wants everyone having surgery .. and as it seems lastly, only fusion. She is very much dishonest as I have proved many times. Don't heard her, is the worst you may do.
    Last edited by flerc; 02-01-2017 at 08:43 AM.

  9. #9
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    And to heard Burdle is the same to heard Pooka1.. the only difference is that one says to be a man and the other to be a woman..

  10. #10
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    Quote Originally Posted by flerc View Post
    And to heard Burdle is the same to heard Pooka1.. the only difference is that one says to be a man and the other to be a woman..
    hi Michelle,

    Not sure what Flerc is on about - I am a woman and have not had surgery. I have been offered it long ago and although it is an option now it is not 'recommended' due to having 3 curves.

    For the record I am delighted to hear about VB and its advances. I believe people will be offered it IF it is a valid treatment option. I do not believe in an conspiracy amongst surgeons.
    I cannot speak for Pooka1 but she has been of great help to me and others. She has always made her thoughts and advice very clear and has backed everything she says up with source references.

    feel free to message me

  11. #11
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    Flerc was wrong about Burdle being a man. He is similarly wrong about many other things. This perfectly illustrates my point that he doesn't know what he is talking about and can't follow the reasoning presented here.
    Last edited by Pooka1; 02-01-2017 at 09:17 AM.
    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."

  12. #12
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    Quote Originally Posted by burdle View Post
    hi Michelle,

    Not sure what Flerc is on about - I am a woman
    Oh sorry.. it seems I wanted to imagine some significant difference.. they sounds exactly the same, says the same.. I needed a way to don't think they are not the same person..

  13. #13
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    Thanks to everyone for chiming in! Ironically, the orthopedic doctor who advised against surgery back in 2010, is from John Hopkins. I lived in Maryland at the time, and had gone to JH for an undiagnosed muscular disease I have, and while I was there they sent me over to the Orthopedics Dept to recheck my spine. I lived in Colorado in 2001, so an Orthopedic surgeon there originally diagnosed me, and did my first measurements. It was the guy in Colorado who said I'd eventually need surgery down the road.

    So back to John Hopkins -- I agree with the Orthopedic Surgeon's assessment. At that time I wasn't experiencing a lot of pain, and he said that while my scoliosis is severe, he didn't recommend surgery. He told me that if I was in more severe pain, then he could see recommending surgery. So I guess sometimes it's not just about how small/big the curves are. I guess they take pain into account as well. Or, at least he does. All Orthopedic Surgeons are different. Or maybe he was also taking my muscle disease into account as well. As much as all Orthopedic Surgeons might give all of us different opinions, we have to remember that we are all different from each other as well. Each of us might have other main, or secondary medical issues that need to be taken into account when deciding how to treat for scoliosis. Treatment is not a 'one size fits all'.

    Update on current situation - So I mentioned nerve pain (in my back and neck) in my original post. I'm not going to wait 9 weeks for my appointment at Washington University. The pain is just too much....I'm seeing my Primary Care Physician tomorrow, and see what's going on.

    burdle - Thanks for sharing! Really inspiring to see someone with similar curvature doing well with PT. Yep, I've been told as well that my curvatures are balanced and how lucky I am that it turned out that way.

    Nice to meet all of you, and lets keep talking!

    Michelle
    2017 - recheck curvature in April
    2010 - 40*lumbar, 51*main thoracic, 33*upper thoracic
    1999 - ASD (heart surgery) ---- congenital heart defect that wasn't discovered until age 20

  14. #14
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    Michelle

    It had been decades before I finally relented and saw my GPís PA back in 2002. I had done the scoliosis tour in the 70ís when I was diagnosed and I could see that he was young and wanted to do a prostate check. I told him, Iím no doctor, but its my back. Lets just focus on the spine ok? He he (There is more to this story and its hilarious......Medically related humor, where would we be without it?)

    Anyway........I did get my hands on some Celebrex, and Bextra and that was a life saver......Combined with hot water soaks, that held me for 6 years with twin 65 degree curves. The referral to a ďregularĒ non-scoli trained orthopedic didnít accomplish much to be truthful. A spinal tap and a unnecessary CT that diagnosed 4 lumbar herniationís. Visits to the doctor can be fun, or heartbreaking.

    PT is a good thing....IF you can find someone with some knowledge of scoliosis. Usually therapists donít look at x-rays so thatís a bit blind....Massages are heaven (with the right masseuse)

    If youíre a candidate for surgery, its good to communicate and become prepared in advance. It was something I thought of for quite a few years. I supposed that helped, but then emergencies happen with resulting surgery and bam, boom, its done without the worry that scoliosis surgery offers.

    Welcome to the forum

    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

  15. #15
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    Ed,

    Thanks for sharing and for the warm welcome. So glad to hear you're doing better after all you have been through. Yeah, I do agree with everyone here who've mentioned that I should see an Orthopedic Surgeon who specializes in scoliosis. Come to think of it, I'm not sure why the receptionist for the surgeon transferred me to the 'rehab' sub dept of Orthopedics. I really need an evaluation before PT can even be suggested. I guess maybe the receptionist could hear the hesitation in my voice when she said surgical consult. But it really does make sense to me now. Thanks to everyone who suggested that!

    Interesting you mentioned massages. Ten years ago, I got a deep tissue massage at a local Spa, and I walked away in so much pain!! I even told her I had scoliosis, and she had me draw my spine on a piece of paper for her to reference, but that didn't help. You really have to trained in scoliosis (and probably reference x-rays) to give good massages! My husband gives me massages at home, he offers all the time because of my back pain, but I still come away with pain than relief. Ed, do you use a regular masseuse who is knowledgable about scoliosis, or a PT. Does a PT even do massages?

    So, I saw my primary care doctor this morning, and she is actually sending me to a neurologist for the nerve pain in my neck, back, arms and legs....feeling it everywhere now. She suggested Washington University, so I was pleased with that. Doc also said more than likely the neurologist would refer me to an Orthopedic Surgeon, so it looks like I'll have come full circle. Now I need to cancel that appointment I have in April with the Ortho Sub Dept.

    Michelle
    Last edited by diznee25; 02-02-2017 at 02:47 PM.
    2017 - recheck curvature in April
    2010 - 40*lumbar, 51*main thoracic, 33*upper thoracic
    1999 - ASD (heart surgery) ---- congenital heart defect that wasn't discovered until age 20

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