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Thread: I need some advice about scoliosis, pain and surgery!

  1. #1
    Join Date
    Jul 2006
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    New York
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    Question I need some advice about scoliosis, pain and surgery!

    Hi,

    I had just seen my scoliosis doctor for the 2nd time and we scheduled surgery for Sep 19. I left the office more confused than I was when I came there. My curves are T27 and L45 and the last time I saw this doc he said he would correct both of the curves as I was having pain in the upper back as oppose to the lower back where the larger curve is. This time the doc said he would operate on the lower curve only and he would not touch the upper curve and that should relieve my lower back. I told him that I donít have low back pain but rather the upper back pain and he had the confused look on his face. So then he said since I have an upper back pain (which he is not sure why) that he would correct both curves and not only the lower curve as he initially said he would. Now I got a little worried because he is not sure whether the pain is caused by scoliosis or not. Part of the reason I am having this surgery is to get the pain relieve and since he is not sure why I have the pain in the upper back then maybe this surgery would not help the pain at all?

    Also, I asked to see some of the other patientís pictures of before and after, the PA was only showing me pictures of patients with severe scoliosis and she said that they normally operate on patients with severe cases. Also, when I asked for patients phone #s that are in my age group and had my type of curves, the PA told me that they don't really have that many patients in my age group (24) and that they treat many patients that are either younger or older than I am. So, I and my mom are even more confused. I would like to know whether my degree of the curve is normally operated on or do patients with this type of degree curves wait until it worsens to have surgery? I just want to say that I only have pain when I do something to cause it like clean, laundry, bath my kids, etc.... I donít know whether that is severe enough to have surgery?

    One last thing, my husband thinks that I should do it now as I am young and the chance of correction is much better now when the curves are not so severe. Also, friends and family don't notice my scoliosis until I tell them and I normally don't have pain because I jsut ask the babysitter or my husband to do it for me.

    I would appreciate it if someone can give me some advice and do you think that I need to have this surgery!!!

  2. #2
    Join Date
    Jun 2005
    Location
    Maryland
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    Is this the only scoliosis surgeon you have consulted? If so, I would recommend perhaps seeking another opinion. Until you feel confident about what your doctor is telling you, I would refrain from scheduling surgery. Also, no one can tell you whether or not you should have surgery. Each case is subjective. Only you know how you feel, whether it's the right time, etc. Only you can make this decision.
    Brandi
    Congenital Scoliosis, 58* lumbar curve
    Combined Anterior/Posterior Spinal Fusion w/Laminectomy May 22, 2006
    L1-S1
    Dr. William Lauerman
    Georgetown University Hospital, Washington, DC
    Pedicle Subtraction Osteotomy @ L3, Posterior Spinal Fusion L2-L4, rod removal with re-instrumentation T10-S1 and Laminectomy February 5, 2009 to correct flatback
    http://brandi816.wordpress.com/

  3. #3
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    If I were you, Mariya, I would try to find alternative methods to treat your pain. At 24, you are fortunate to have time on your side. Technology is evolving so rapidly that I would not be surprised if current surgical treatments won't be considered outmoded within the next 10 to 15 years.

    Chris

  4. #4
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    Jul 2006
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    British Columbia, Canada
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    Your curve is probably just nearing the appropriate range to consider surgery. I have a 43 degree curve and my surgeon had no interest in operating. (I am 20 years old). Generally around 50 degrees is when they consider, although it does depend on the specific case and you do have a double curve, which may change things. If the pain isn't overwhelming you may want to consider alternative treatments such as Chris suggested - Physiotherapy, chiropractor, acupuncture, etc. None of these things will decrease your curve or keep it from getting worse, but they may be able to manage your pain. Be sure to get your curve checked at regular intervals if you decide against the surgery, so you can keep an eye on the progression. If it doesn't get worse over time, you may be able to avoid surgery forever. It is also possible that your pain is not being caused by your scoliosis, in which case conservative treatments may be even more appropriate - if the pain is being caused by something else, the surgery will not likely relieve the pain, but physiotherapy, etc may help regardless of what is causing it. One important question is: has the curve gotten worse since you have finished growing? If it has, it probably will continue to get worse, and since you are so young with already a 45 degree curve, you will very likely be looking at surgery at some point in the future. A second opinion is always a good thing, and time is on your side!



    good luck!!
    Kathryn

  5. #5
    Join Date
    May 2005
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    147
    RUN...FAST!!! When you have a doctor who does not seem to know exactly what he is doing....find a second opinion! What area are you in? Maybe someone here knows of a wonderful doctor you can see. One you can feel confident in. Linda

  6. #6
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    New York
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    Hi again

    I just want to thank each one of you for all your answers and the things that you mentioned are so true. I had seen other doctors prior to seeing him and they all said surgery is the option for me and that I should do it now rather than wait only because the recovery is much faster and that there is a chance of the curve getting worse. I can not say whether or not my curve progressed over the years as I had only noticed the difference in the way I look after I had my 2 kids and thats when I found out that i had such curves. The pain in my back came about two years ago.

    My doctor seems to be very known in NY and I only hear great things about him. I have good recommendations from his two patients that actually are friends of my family and they say that he is really the best of the best out there. In addition, I spoke to the nurse that operates with him and she also said that he trully is a great surgeon and that he performs miracles. She said that if she had to do it herself she would only choose him out of all the other surgeons in that hospital. He seems to be very knowledgeable and very expirienced and I just think that I am not sure whether or no the pain will go away after surgery.

    I did not try any alternative methods for treating my pain because I think that I am not only worried about the pain but truthfully the deformity in my body as well. Although it is barely noticeable in clothes, I know how I look now and that 20 years from now I will look much worse and crooked and I am scared of that since I am young and that the curve if it progresses at 1degree each year that would mean that at age 44 my lower curve will be 65 degrees. So its kind of both things at the same time that I am looking forward to treating with this surgey, although I don't tell that to my family beccause they would just stop me from going for this surgery.

    Had all of you been expiriencing a lot of pain before surgery and what is your pain like after surgery?

    Thanks again,
    Mariya

  7. #7
    Join Date
    May 2006
    Location
    Bucks County, Pa
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    I am 38 and I am scheduled for surgery in early Sept. Pain is what drove me to have this surgery. I have a 55 degree lumbar curve. I also have disc problems some stenosis and arthritis. I would be lying if I said I didn't care about the cosmetic benefits. It will be nice to get some of my height back and actually have an even waistline. My surgeon has told me that my pain should definitely improve esp. pain going down my legs. He also told me not to expect to be totally pain free.
    If you feel that you need more answers before your surgery, talk to the physicians assistant.

  8. #8
    Join Date
    Oct 2004
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    459
    Hi Mariya,
    I just wanted to say that in my opinion, even if the people around you have given you good feedback on a surgeon, unless you are very comfortable with that surgeon and he/she has performed the same surgery that you contemplating on the people providing you feedback, I wouldn't really take much consideration into their opinions.

    The first orthopedic surgeon I met with was highly recommended by my GP and a few people my parents knew. He took one look at my x-rays and said that he had "never seen curves that bad" (the curves were 55 to 65 degrees each). I refused to go back to him and later found out that scoliosis and spinal fusion was not his specialty, sports medicine was and the people who gave good recommendations had knee and shoulder injuries repaired by him. To me, it was like comparing apples to oranges.

    You need to feel 100% comfortable and confident with your surgeon and their abilities. Your life is in their hands and there is no other way to look at.

    Please seek a second opinion from a surgeon who specializes in scoliosis and spinal fusion surgery or at least one who specializes in spinal issues. The extra effort and time will pay off in the end.

  9. #9
    Join Date
    Jun 2005
    Location
    Maryland
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    408

    Thumbs up

    Amen, Heidi. I believe you hit the nail right on the head.
    Brandi
    Congenital Scoliosis, 58* lumbar curve
    Combined Anterior/Posterior Spinal Fusion w/Laminectomy May 22, 2006
    L1-S1
    Dr. William Lauerman
    Georgetown University Hospital, Washington, DC
    Pedicle Subtraction Osteotomy @ L3, Posterior Spinal Fusion L2-L4, rod removal with re-instrumentation T10-S1 and Laminectomy February 5, 2009 to correct flatback
    http://brandi816.wordpress.com/

  10. #10
    Join Date
    Sep 2003
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    Northern California
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    Hi Mariya...

    Have you done a search for your surgeon's name here? There are a lot of great spine surgeons, many of whom do only a few scoliosis surgeries a year. There are plenty of great scoliosis surgeons in NY. Be sure you've picked one. :-)

    Regards,
    Linda

  11. #11
    Join Date
    Jul 2006
    Location
    New York
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    Quote Originally Posted by LindaRacine
    Hi Mariya...

    Have you done a search for your surgeon's name here? There are a lot of great spine surgeons, many of whom do only a few scoliosis surgeries a year. There are plenty of great scoliosis surgeons in NY. Be sure you've picked one. :-)

    Regards,
    Linda

    Hi,

    I actually heard great things about this surgeon here and on other websites. Even the nurse that works with these surgeons had said that he is the best out there and she would choose him because his surgeries are succesful and he is very expirienced. He is at the forefront of all the modern technology and he is very known to people that I talk to you like PT and PAs. He is known for having specialty in scoliosis surgeries. I am pretty sure I have a great and expirienced doctor but maybe I just need to see other doctors to know if I need to have this surgery and the type of approach they would take and then compare and decide which one of them made moree sense in their reasoning.

    I am not doubting that I need the surgery or that I would need it in the future but I am not sure if the upper curve needs a correction and whether the surgery would relieve the pain in the upper back if I only correct the lumber area bec the lumbar curve is twice bigger than the thoracic!!!

    Thanks!
    Last edited by mariya; 08-03-2006 at 02:20 PM.

  12. #12
    Join Date
    Aug 2006
    Location
    Lawrence, Kansas/ Overland Park, KS
    Posts
    195
    Mariya,

    I am 18, and seem to be experiencing some of the same frustrations as you are... i am being referred back and forth between pediatricians and adult doctors, because they don't seem to know what to tell me... I have a lot of discomfort and my curves have gradually progressed although i haven't have any interventional treatments yet besides PT, and cortisone shots (one ended up in a lung collapse), but nothing has seemed to work and we are on the brink of considering surgery. I am a very active person and I don't know how to qualify or quantify the pain i am having so that i know whether or not surgery is right for me or if it would just make everything worse.

    It seems there is no good thing to do, so it is all very frustrating.

    -Abbie
    aBbiE
    22 yr old F,KU college student
    Kyphoscoliosis...
    Scoliosis (25T, 23L) diagnosed @ 14 yrs old; curves June 08 were 45T, 32L with 18 degree rotation
    Kyphosis of 65 degrees...
    I am missing a lumbar vertebrae

    Surgery 6/30/2008 with Dr. Lawrence Lenke
    Fused T2-L2


    before/after pics
    all smiles!

  13. #13
    Join Date
    Sep 2003
    Location
    Fernley, Nevada
    Posts
    352
    amae28,
    Have you been seen by an Orthopedist that deals with adults? At the age of 19 yrs, your skelaiton is mature and set. You need to be seen by a doc that deals with scoli and adults, he will be able to quantify your need for surgery or if you should wait.
    SandyC

  14. #14
    Join Date
    Aug 2006
    Location
    Lawrence, Kansas/ Overland Park, KS
    Posts
    195
    Sandy,

    I am going to see one shortly that my pediatric doctor has recommended... the reason why i haven't seen one yet is i have just tried to stick with my doctor that knows me and that i have been seeing for five and a half years, but i think he has realized that although he has continued to treat his patients until they are even 21, that the problems i am having are out of the scope of his practice and/or comfort level for treatment... so hopefully this other doctor will bring me some more answers.

    -Abbie
    aBbiE
    22 yr old F,KU college student
    Kyphoscoliosis...
    Scoliosis (25T, 23L) diagnosed @ 14 yrs old; curves June 08 were 45T, 32L with 18 degree rotation
    Kyphosis of 65 degrees...
    I am missing a lumbar vertebrae

    Surgery 6/30/2008 with Dr. Lawrence Lenke
    Fused T2-L2


    before/after pics
    all smiles!

  15. #15
    Join Date
    Sep 2003
    Location
    Fernley, Nevada
    Posts
    352
    It is comfortable to keep seeing a doc that knows you, but sometimes that isn't the best idea when it comes to our scoli. I hope that this new doc can help you. If, for whatever reason you don't like this new doc, you might want to so a search on this site for a scoli doc in your area.
    SandyC

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