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Thread: So glad I found this site!

  1. #1
    Join Date
    Jun 2013
    Location
    Muskoka, ON Canada
    Posts
    77

    So glad I found this site!

    I have been reading your posts for a couple of months now and have learned so much about Scoliosis.
    I have had upper and lower back pain for years and have always been told this was caused by arthritis. The last few years I was having more and more difficulties walking. Nov. 2012 my doctor send me for a cat scan and the results showed I have 3 herniated disks. He told me to try a Physio therapist or chiropractor for relief as there was nothing he could do for me. I also go to aqua size which seems to help more then anything else.
    I asked my doctor to refer me to a spine specialist, he was reluctant to do so as he did not think they could do anything for me. You will need a MRI first and then we will see. I was then send to a Neurosurgeon in Mississauga (Toronto area). He said you are very Scoliotic, the MRI shows rotoscoliosis, subluxation and spinal stenosis.
    He said I would need extensive instrumental spinal fusion and decompression.
    Then he said he would not be able to do this surgery and made an appt. with his colleague also a neurosurgeon.
    This was the first time I found out I had scoliosis.
    The second surgeon agreed with the first and said because of the significant scoliosis he could also not operate on me and send me to third doctor.
    He is a scoliosis spine specialist, my appt. with him is Oct. 8th.
    I have since been reading a lot also purchase David Wolpert's book as suggested on several posts.
    I wondered if there were any members from the Toronto area. I live in Muskoka about 3 hours north of Toronto.
    Thanks for all your help for now, it has been an eye opener reading on this site.
    Marianne
    rotoscoliosis, subluxation and spinal stenosis
    Surgery April 15, 2015 at age 67
    T11-L5
    Decompression with multiple discectomies
    Concord cages @ L2-3, L3-4, L4-5
    Osteotomies and local bone grafting

  2. #2
    Join Date
    May 2013
    Location
    Grove City, OH
    Posts
    275
    Hi Marianne!

    I've been on this site for just a few months & I'm finding a wealth of information, too! I'm going back and reading lots of the old threads, too.

    Peg

  3. #3
    Join Date
    Jun 2013
    Location
    Muskoka, ON Canada
    Posts
    77

    Hi Peggy

    Thank you for replying to my thread, I am so sorry to read about your motorcycle accident. I hope you and your husband are making out all right. I am sure you would have liked to get your surgery over and done with.
    Wishing you all the best.
    Marianne
    Marianne
    rotoscoliosis, subluxation and spinal stenosis
    Surgery April 15, 2015 at age 67
    T11-L5
    Decompression with multiple discectomies
    Concord cages @ L2-3, L3-4, L4-5
    Osteotomies and local bone grafting

  4. #4
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690
    I don't know what I would have done without the wonderful people from this forum before and after my surgery. You will not only find information about scoliosis, but get emotional support as well.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  5. #5
    Join Date
    Jun 2013
    Location
    Muskoka, ON Canada
    Posts
    77

    Hi Karen

    Quote Originally Posted by golfnut View Post
    I don't know what I would have done without the wonderful people from this forum before and after my surgery. You will not only find information about scoliosis, but get emotional support as well.
    Your golf video is amazing, hard to believe you can move like that after the surgery you have had.
    Marianne
    rotoscoliosis, subluxation and spinal stenosis
    Surgery April 15, 2015 at age 67
    T11-L5
    Decompression with multiple discectomies
    Concord cages @ L2-3, L3-4, L4-5
    Osteotomies and local bone grafting

  6. #6
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690
    Marianne,
    When I look at the video, I am amazed at how different I swing now than when I was 15 months post-op. That video was my first attempt at golf after 15 months of not doing any twisting, bending, etc. Now, my swing is much more fluid and faster than when the video was taken. I am only saying that so that people know that for most of us, everything gets so much better, even after 2 years. I truly believe that most people do not continue to post when they are doing great because they just get busy moving on with their life. I am busy, but feel that I owe it to others to encourage them based upon my experiences. I have won two tournaments and had a hole-in-one since my spinal fusion in January of 2011. I never would have dreamed it was possible.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  7. #7
    Join Date
    Jun 2013
    Location
    Muskoka, ON Canada
    Posts
    77

    Karen

    I am thankful to those of you that do post after succesful surgery, we can learn so much from from your post and know what to expect. Congratulations on your hole in one that must have been exciting. I am not a golfer but my husband, son and daughter and family all golf. We just had a family golf weekend here, about 25 adults and 12 kids. Lots of fun it is an annual weekend for us.
    Marianne
    rotoscoliosis, subluxation and spinal stenosis
    Surgery April 15, 2015 at age 67
    T11-L5
    Decompression with multiple discectomies
    Concord cages @ L2-3, L3-4, L4-5
    Osteotomies and local bone grafting

  8. #8
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    Marianne,

    Welcome! Most of us on this site who've had long fusions for scoliosis go to orthopedic surgeons. Ideally, you want someone who is trained specifically in scoliosis surgery and is a member of the Scoliosis Research Society. It's very important to get a surgeon who does these surgeries regularly, even if that means traveling for surgery.

    Best wishes,
    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  9. #9
    Join Date
    Jun 2013
    Location
    Muskoka, ON Canada
    Posts
    77

    Evelyn,

    The surgeon I am seeing Oct. 8th is an Orthopedic Surgeon who specializes in scoliosis.His name is Dr. Dana Wilson, I wondered if anyone on the forum knows him. Is there anything specific I should be asking him about. This is all so new to me and I am very nervous about the whole thing. My pain seems to be getting worse all the time. And I am having great difficulties walking.
    Marianne
    rotoscoliosis, subluxation and spinal stenosis
    Surgery April 15, 2015 at age 67
    T11-L5
    Decompression with multiple discectomies
    Concord cages @ L2-3, L3-4, L4-5
    Osteotomies and local bone grafting

  10. #10
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Marianne: Welcome! I believe that the book on scoliosis has questions. Is the doctor a member of the SRS? How many surgeries on older persons w/ disc repairs does he do in a month/year? That was important to me since I am also an older person w/ no previous back surgery and my main problem was disc degeneration and stenosis.

    There are lots of threads w/ questions to ask....just review them and then make your own list.

    Susan
    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

  11. #11
    Join Date
    Jun 2013
    Location
    Muskoka, ON Canada
    Posts
    77
    Susan, thank you for the information. You have had a lot to deal with yourself and now have to have another operation.
    I wish you all the best and will be thinking about you.
    Marianne
    Marianne
    rotoscoliosis, subluxation and spinal stenosis
    Surgery April 15, 2015 at age 67
    T11-L5
    Decompression with multiple discectomies
    Concord cages @ L2-3, L3-4, L4-5
    Osteotomies and local bone grafting

  12. #12
    Join Date
    May 2013
    Location
    Grove City, OH
    Posts
    275
    Hi Marianne!
    I agree with Evelyn & Susan's recommendations. Even if I might have a 'textbook' scoliosis case, I want a doctor with lots of experience to draw from, in case of complications! In fact, it's due to the great information on this board that I'm searching for a new surgeon. I'm considering traveling.
    Some of my less important questions were about wearing a brace & rehab. I also asked about the length of the surgery. I've gotten most of my information about what to expect in recovery from this site.
    Based on your diagnosis date, you really haven't had much time to absorb the whole idea of this major surgery. I'm 59 & my doctors have been talking about scoliosis surgery for the past 9 years. I finally decided to have the surgery this fall, but instead I'm recovering from a motorcycle accident. The blessing in disguise was finding this board & understanding that I need a more experienced surgeon. Perhaps surgery will be this spring.
    Peg
    Last edited by PeggyS; 08-29-2013 at 08:18 PM. Reason: Added more info.

  13. #13
    Join Date
    Jun 2013
    Location
    Muskoka, ON Canada
    Posts
    77

    Hi Peggy

    Yes you are right, I am still trying to absorb the idea of this major surgery. I will see Dr. Wilson and ask lots of questions as you all sugested and go from there.
    I hope you are recovering from your accident and wishing you well.
    Marianne
    Marianne
    rotoscoliosis, subluxation and spinal stenosis
    Surgery April 15, 2015 at age 67
    T11-L5
    Decompression with multiple discectomies
    Concord cages @ L2-3, L3-4, L4-5
    Osteotomies and local bone grafting

  14. #14
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Quote Originally Posted by Marianne View Post
    Susan, thank you for the information. You have had a lot to deal with yourself and now have to have another operation.
    I wish you all the best and will be thinking about you.
    Marianne
    Thanks for your well wishes. Major surgery is a craps shoot, especially for us older persons. Almost everyone that I know had some problem postop, most of them minor.

    Inspite of some minor problems and one major one, that of my hernia repair, I would have the surgery all over again. I am a fairly healthy woman and the prospect of increasing problems with multiple disc problems and stenotic discs was the tipping point in my decision. I did quite a bit physically before my surgery as I had lots of minor procedures done. Then, they all wore off and I had to face the music.

    My thread details my decision and indecision. It is a journey. The recovery seems to take longer that you want. Line up your help. I went to a rehab hospital for a week and that was a good decision for me. I remember almost nothing of the 10 days after surgery in the surgical hospital.

    I wish you well. The main factor in surgery is having confidence/trust in your surgeon. I did and was phenomenally relaxed going into both surgeries.

    Hugs to you, Susan
    If you want to talk on the phone, send me a PM and I will give you my email and phone number.
    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

  15. #15
    Join Date
    May 2009
    Posts
    3,745
    hi Marianne
    i read your posts but did not see mention of how big your curves
    are, where they are....where it was suggested the fusion start and end...
    have you discussed whether you have any options...?
    if there is any choice of how far to extend the fusion, it can help
    to get more than one opinion from more than one top surgeon.

    you might want to discuss whether you could have a minimally invasive approach...there is a surgeon in CA...at Cedars Sinai...who believes minimally invasive approach can be used for just about everybody, regardless of where the curves are located...

    you might want to ask whether the surgeon is recommending one metal be used over another metal....and why...
    how much curve reduction could you look forward to...
    and what does the surgeon think about reduction in your pain levels,
    after healing is complete.

    in general, when it comes to any kind of surgery, i know some people would rather not know all there is to know about what will happen in the operating room, and afterwards...depending on what surgery they need...
    but i think that the more the patient knows...and knows to ask questions about...the better...

    best of luck...
    jess

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