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Thread: new here long & i apologize

  1. #1
    Join Date
    Jun 2008
    Posts
    237

    new here long & i apologize

    Hi,
    I am new to this board and I just came from a 21/2 hour MRI of my thoracic and lumbar spine. I had a 3 level fusion 3 years ago that was supposed to fix me and answer all my problems but of course it didn't. it barely touched the tip of my curve. at the time i had no idea that my curve would continue to grow and now i have a 57 degree curve and I don't know if it's really bad or not. i do know i am in pain and cannot walk. 4 years ago i could easily walk 4 miles a day and now i can barely walk a block. i live outside of philly and saw a doctor last week who sent me for the mri & xrays. he specializes in scoliosis and spinal deformity but someone i know from another board tells me his reputation isn't great and that I should go to ny to see dr. bitan. anyway, i like the guy and I really don't feel like going to ny to see someone. at this point i haven 't committed to surgery and he hasn't told me exactly what he has in mind. he will be sending a letter out to me and my referring surgeon with details of what he would do. apparently i lean to the right and also cannot stand up straight. if my arms were longer i would look like a monkey dragging my hands on the ground. he said he would start at t10 and go to the pelvis. i asked why he wouldn't start higher up and he said it didn't need it and he saw no reason to do the entire spine (just half of it). so now i wait and figure out when i could fit in surgery and recovery. i am 57 years old and i am working on getting a psyd in psychology. i already missed one semester to get a new hip. so that's all for now. i am so happy to have been directed to this site and unfortunately don't even remember who was kind enough to give me the link but thanks anyway.
    avis

  2. #2
    Join Date
    Nov 2003
    Location
    PA
    Posts
    360
    Hi Avis,

    Sorry to hear that your curve has progressed. That's not very pleasant to hear. What doctor did you see? There are a lot of Philly people on here (I live about 50 miles west of Philly) who could suggest other doctors. I had surgery 4 weeks ago by Dr. Fras. I really like him and feel that he did a great job with my surgery. I can give you his number if you are interested.

    Good luck!

    Shell
    Chemist, 30

    1998- 18 degrees
    2003- 33 degrees
    2005- 37 degrees
    2006- 44 degrees
    May 2007- 47 degrees
    December 2007 - 50 degrees X-ray

    Surgery May 27, 2008
    Fused T1 to L2
    Curve corrected to 15 degrees X-ray

  3. #3
    Join Date
    Nov 2004
    Location
    Berkeley, California
    Posts
    206
    Avis,

    Welcome to this forum. You will find so much info here that a spine doctor doesn't have the time or personal experience as a patient to tell you.

    If you do decide to pursue surgery, I suggest you consider a trip to NYC to consult with Dr. Boachie. He did my T2 - L2 fusion six months ago (severe kyphosis and compensatory scoliosis) at age 62, and attained a very good correction considering my age and that the curves began when I was 13 and thus there was a lot of calcification and rigidity. He is one of the very best out there, and I decided, after consulting with several spine surgeons locally, that I would entrust my spine only to him.

    Good luck to you as you begin this process.

    Keep us posted!

    Janet
    As of 12/25/07, age 62, 100* thoracic kyphosis, 73* L1-S1 lordosis, 37*/25* compensatory S-curve scoliosis. On 12/26/07, Dr. Boachie @ HSS NYC did 11 hours ant. & post. procedures, fused T2-L2, kyphosis now 57*, scoli 10*. Regained 2 1/4 inches in height!! Improving every day.

  4. #4
    Join Date
    Jun 2008
    Posts
    237
    thanks for the replies. the doctor in philly i saw was dr. vaccaro. has anyone had their surgery done by him or know anything about him. i sent my films to dr. bitan in new york and i am waiting to see what they have to say. i know someone who has had surgery with dr. bitan and she raves about him but it was not scoli surgery. is dr. fras in philadelphia?
    avis

  5. #5
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,294

    Exclamation see a scoliosis specialist only

    Do not go to a doc who does not have extensive experience with scoliosis--especially do not let them fuse other levels. Why? Because the whole spinal balance/alignment must be considered. The spine can continue to curve in other places and you are in a mess.

    Search this forum and you will get your answers.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  6. #6
    Join Date
    Nov 2003
    Location
    PA
    Posts
    360
    Dr. Fras sees patients in Broomall and at Lankenau hospital. He's very nice and I feel he did an excellent job with my surgery and correction. There were definitely some issues though. The Briarrose Surgery Update thread explains some of them or I can PM you if you are interested.
    Chemist, 30

    1998- 18 degrees
    2003- 33 degrees
    2005- 37 degrees
    2006- 44 degrees
    May 2007- 47 degrees
    December 2007 - 50 degrees X-ray

    Surgery May 27, 2008
    Fused T1 to L2
    Curve corrected to 15 degrees X-ray

  7. #7
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,978

    Welcome!

    Hi Avis! I'm so glad someone gave you the link to the forum! It is a great place to find info and support and understanding! We are all in the same boat-- or else have a loved one in it. Because of the understanding aspect, it's a great place to share some of the thoughts or emotions that can try to control us at times... without feeling like you're upsetting your own family by voicing your concerns or fears. It's also a great place to share about our victories and how exciting this can be too!

    I'd like to echo the thought of making sure you have an experienced scoliosis specialist as your doctor. With something this big, you really need to have total confidence based on fact. It's alright to ask questions! Find out how many scoli surgeries they do, etc. Most people seem to get second opinions (and third, etc.) until they feel like they are sure of their doctor-- and that is soooooo important. It's your spine-- pretty much the foundation of your body, that is probably going to need major reconstruction. So you definitely want it done right!!!

    Both of the scoli books I wrote about in the link below have sections on choosing a surgeon that you may find helpful. They also have lots of good info, period. I'm just putting the link here because it's easier for me and also has Linda Racine's extremely thorough website of scoli resources and info. http://www.scoliosis.org/forum/showp...9&postcount=12

    Best wishes as you continue your scoli journey. Susie
    67 and plugging along...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  8. #8
    Join Date
    Jun 2008
    Posts
    237

    Talking

    Thanks for the input. As a matter of fact, over the weekend I ordered the scoliosis sourcebook and it should arrive by tomorrow I think. it is so validating to find that my symptoms which seem odd to me are just common scoli things. The other day i was wondering why my waistline had changed from being low waisted to high waisted with my boobs now laying near my waist and someone wrote that that was a result of scoli. Now it makes sense especially since I have lost at least 11/2 inches in height. I sure hope after surgery that I can gain height back and have my waist go back to where it used to be. sorry for babbling
    thanks again.
    avis

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