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  1. #1
    Join Date
    Jan 2017
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    6

    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
    Join Date
    Mar 2010
    Posts
    2,004
    51 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 > 50. 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
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    758
    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
    Join Date
    Mar 2010
    Posts
    2,004
    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
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    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
    Join Date
    Sep 2011
    Posts
    237
    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
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    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
    Join Date
    Mar 2016
    Posts
    153
    Quote Originally Posted by flerc View Post
    Remember that fusion is for ever and ALWAYS have a negative side regardless the surgeon doing it.
    is it forever? if you cut the bones they will be mobile again.
    Spinal cord and nerves being intact you can add some mobility again. researchers just need to think a little bit more. if you cut a fusion of course it will be mobile again. there is even pseudoarthrodesis.

    don t believe a doctor that says " forever" . forever is when you are death. As we are still breathing we can find a better solution.

  9. #9
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Hi there, Michelle
    Uncertain what Richard means above.
    I started my "journey" like you probably will from what I have read of what you are planning.....with physiatry. Not a bad place to start. When I originally called, the receptionist asked if I wanted conservative or surgical care and I said "conservative", so off I went to the alternative to surgery, pain management. The PM MD sent me immediately to an orthopedic scoliosis spinal surgeon. He explained surgery [then had my husband come for an appointment the next week when he explained surgical option again] and I said that I wanted to continue with PT, etc to avoid surgery. I do recommend seeing a surgeon early one because you can start the relationship, maybe then get another surgical opinion because if you do need surgery down the road, the last thing that you want is to be desperate in severe pain and take the first surgeon that come along [bad idea].

    Best of luck with your journey. My guess is that pain will be the factor that tips whether or not you are offered and agree on surgery. I recommend trying everything possible before agreeing to surgery. When your life is so compromised that surgery is your only option, that's a good time to have surgery. And yes, I have had numerous setbacks with surgery, but for me in severe pain and disability, it was a good option.

    Susan
    Last edited by susancook; 02-11-2017 at 06:18 PM.
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  10. #10
    Join Date
    Mar 2016
    Posts
    153
    Quote Originally Posted by richardis View Post
    is it forever? if you cut the bones they will be mobile again.
    Spinal cord and nerves being intact you can add some mobility again. researchers just need to think a little bit more. if you cut a fusion of course it will be mobile again. there is even pseudoarthrodesis.

    don t believe a doctor that says " forever" . forever is when you are death. As we are still breathing we can find a better solution.
    As of now, it is irreversible to almost 99% of the population, unless you know some super specialized top surgeon in the field who has the knowledge and hard-work mentality to crack the solution. Spinal fusions have already been unfused with success. Fact.

    Science has no limits and so as the human progress as long as you keep working and researching. It will be possible in the future, not sure if in our lifetimes but it will. Every problem has a solution. We know the problems so it is about time to find solutions.

  11. #11
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    Hi Michelle I'm Kara welcome.
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  12. #12
    Join Date
    Jan 2017
    Posts
    6
    Quote Originally Posted by LindaRacine View Post
    Hi Michelle...

    We often write prescriptions for PT with 1 visit, and the PT evaluates the patient and decides how many visits and how often they're needed.

    Cervical radiculopathy is fairly common in people with scoliosis. I have it, but keep it at bay with daily exercise.

    Best of luck getting your pain under control.

    --Linda
    Thanks Linda. Yesterday marked my first PT visit, and at the end of my session I was told to schedule 2 or 3 appts per week, and when I asked how long PT would last for me, they said it depends on how responsive my body is to the therapy. Due to the sevarity of my pain, it was decided that I would not exercise on my first visit. Instead my therapist did manual decompression on my neck, and then did an electroshock thing on my shoulders and neck area to loosen up the muscles. Tomorrow I'll be doing posture exercises.

    Quote Originally Posted by titaniumed View Post
    Yes, many of us. Myself included...

    Michelle, Your close, but I would INSIST to see Dr Gupta.
    http://www.ortho.wustl.edu/content/P...ta-MD/Bio.aspx

    This guy is no hack.

    Hang in there

    Ed
    Thanks for the info on Dr. Gupta, Ed. I do plan on a surgical consult...soon. My husband has a lot on his plate right now with his mother's health. She has cancer, and just started hospice care yesterday. We live out of state from family, so we'll be flying to Colorado a couple times in the next few months. Sadly she isn't expected to make it past April/May.


    Quote Originally Posted by susancook View Post
    Hi there, Michelle
    Uncertain what Richard means above.
    I started my "journey" like you probably will from what I have read of what you are planning.....with physiatry. Not a bad place to start. When I originally called, the receptionist asked if I wanted conservative or surgical care and I said "conservative", so off I went to the alternative to surgery, pain management. The PM MD sent me immediately to an orthopedic scoliosis spinal surgeon. He explained surgery [then had my husband come for an appointment the next week when he explained surgical option again] and I said that I wanted to continue with PT, etc to avoid surgery. I do recommend seeing a surgeon early one because you can start the relationship, maybe then get another surgical opinion because if you do need surgery down the road, the last thing that you want is to be desperate in severe pain and take the first surgeon that come along [bad idea].

    Best of luck with your journey. My guess is that pain will be the factor that tips whether or not you are offered and agree on surgery. I recommend trying everything possible before agreeing to surgery. When your life is so compromised that surgery is your only option, that's a good time to have surgery. And yes, I have had numerous setbacks with surgery, but for me in severe pain and disability, it was a good option.

    Susan
    Hi Susan,

    Thanks for sharing your experience. Interesting, so you tried physiatry and they immediately sent you for a surgical consult. That's great to know that physiatry won't push PT, or prolong alternative treatment if surgery is really warranted. Yeah, I'm just trying to start from the ground up, meaning I don't even have current x-rays or MRIs of my spine. All that info is 7 years old. The receptionist said the Physiatry dept is where evaluations, and tests are done. At this point, they won't schedule a surgical consult until I get evaluated. Once I have that appointment, I'll definitely follow up with this thread, and share how my recheck goes.

    Quote Originally Posted by kennedy View Post
    Hi Michelle I'm Kara welcome.
    Hi Kara! Nice to meet you.
    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

  13. #13
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,535
    Quote Originally Posted by diznee25 View Post
    Thanks for the info on Dr. Gupta, Ed. I do plan on a surgical consult...soon. My husband has a lot on his plate right now with his mother's health. She has cancer, and just started hospice care yesterday. We live out of state from family, so we'll be flying to Colorado a couple times in the next few months. Sadly she isn't expected to make it past April/May.
    So sorry to hear this.....

    I had a good friend give me his words of wisdom while he was alive. Once your parents are gone, they are gone. Spend more time with them now.

    I think about my parents every single day. Every single day.....You can avoid thinking about your back, but this never ends.

    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

  14. #14
    Join Date
    Mar 2010
    Posts
    2,004
    Quote Originally Posted by diznee25 View Post
    Instead my therapist did manual decompression on my neck, and then did an electroshock thing on my shoulders and neck area to loosen up the muscles.
    Michelle, how is this? What do you think?

  15. #15
    Join Date
    Dec 2016
    Posts
    34

    Hi Michelle,

    Quote Originally Posted by diznee25 View Post
    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

    Thank you for posting about your health and scoliosis issues. I am so sorry that you have constant nerve pain. I do too, and for the life of me, couldn't go on like this for long. I hope that you get all the help that you need. I'll keep you in my prayers.

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