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  1. #1
    Join Date
    Mar 2012
    Location
    Pittsburgh, PA
    Posts
    21

    Next surgery coming up...just saying hi!

    Hi everyone!

    I've read these forums for a very long time, but this is my first post. My third surgery is coming up soon and I'm getting a little anxious - so I figured I would go ahead and introduce myself and get to know everyone!

    My name is Lindsay. I'm 26 and live in Pittsburgh, PA. A little background...I was diagnosed with congenital scoliosis (a hemivertebrae) when I was 7. My curve was about 72 degrees at the time of surgery, and I was fused with a bone graft (L2-L4) and casted. Up until about three years ago, I lived relatively pain free. I'm not sure what caused the increase in pain, but I found myself pursuing another surgery to try and relieve the pain. Last May, I had an XLIF, and they fused L1 and L2. To say that the pain increased is an understatement - I would give anything to feel how I felt pre-XLIF. It's awful. I can't function.

    So, now I have surgery scheduled with Dr. Michael Vitale and Dr. Peter Angevine at Columbia in NYC. They're planning on fusing T-12 to sacrum with pelvic fixation.

    I'm scared, though I feel that this surgery is necessary to have any hope that I can regain some quality of life. You've all been so inspiring, so, thank you.

    One question: has anyone else been fused young, where the surgeons didn't really correct the curve? I understand that some correction was achieved during my first fusion, but my curve is still around 45-50 degrees (stable, hasn't progressed since I was 7). It's frustrating to accept what was standard practice in 1992, and I wonder what my spine would be like if I had the surgery today.

    Thanks!

    Lindsay

  2. #2
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,531
    Hi Lindsay
    Welcome to the forum.

    Ok, so if I understand correctly, you had a hemi in your lumbar, and they fused 2 levels at age 7 on a 72 degree lumbar curve?

    How many levels do you have fused right now? Is it 3 lumbar levels?

    I have to agree that we all wonder about techniques and procedures at any particular time or year. It is hard to fuse young kids. Its logical that level selection and or number of levels to fuse would be minimal due to growth....hemiís also complicate matters. You are a scoliosis survivor.

    I waited a long time, about 34 years for my surgeries and ended up with a full rack at age 49. It also was necessary...

    When is this going to happen?

    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

  3. #3
    Join Date
    Mar 2010
    Posts
    2,755
    I am not fused, but just wanted to say welcome! I hope more people chime in here to answer your questions. For the most part, this is a really great bunch of people and VERY supportive.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  4. #4
    Join Date
    Mar 2012
    Location
    Pittsburgh, PA
    Posts
    21
    Thanks, guys It's nice to feel like I'm surrounded by others who totally get how I'm feeling.

    Ed...yes, well, they fused L2-L4 when I was 7. I'm currently fused L1-L4 (they did L1 and L2 last year). It's really hard to accept the reality of all of this, but I try to stay pretty positive. I like "scoliosis survivor". About two months ago, I went through a phase of heavy research - journal articles, forums, etc. It was educational but overwhelming. I remember reading that there is no cure for scoliosis and I found myself repeating that over and over again. While it's something I've known since I was diagnosed and initially treated, it's still hard to hear.

    Funny that you ask about my surgery date. It was scheduled for April 13 (yes, Friday the 13th, yes, it freaked me out) - then I got a call from one of the surgeon's staff who said that both of my surgeons are leaving for a conference that day. They didn't want to operate and then leave, which I obviously appreciate! So, I'm waiting to hear. I'm hoping it's not past May!

    Thanks for the warm welcome!

    Lindsay

  5. #5
    Join Date
    Mar 2012
    Location
    Pittsburgh, PA
    Posts
    21

    X-ray

    I need to figure out how to put my x-rays and stuff in my signature, but since I haven't yet done that...here's an x-ray from 2008 ish. This was before my XLIF. You can see here how much was left uncorrected from the 1992 surgery. xray.JPG

    Lindsay

  6. #6
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,531
    I see, no hardware.....which is probably a good thing. Looks very painful.

    I do have a thread in my sig that has bending and twisting pics....and of course my x-rays...you can see that I do get around ok. I still ski after a full fusion, here is a video. I have to throw this up every once in a while. He he That’s me in the red jacket.

    http://www.youtube.com/watch?v=4tEyp...&feature=email

    Ed
    Last edited by titaniumed; 03-24-2012 at 04:41 PM.
    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

  7. #7
    Join Date
    May 2012
    Location
    United Kingdom, Leeds
    Posts
    128
    Quote Originally Posted by les130 View Post
    Hi everyone!

    I've read these forums for a very long time, but this is my first post. My third surgery is coming up soon and I'm getting a little anxious - so I figured I would go ahead and introduce myself and get to know everyone!

    My name is Lindsay. I'm 26 and live in Pittsburgh, PA. A little background...I was diagnosed with congenital scoliosis (a hemivertebrae) when I was 7. My curve was about 72 degrees at the time of surgery, and I was fused with a bone graft (L2-L4) and casted. Up until about three years ago, I lived relatively pain free. I'm not sure what caused the increase in pain, but I found myself pursuing another surgery to try and relieve the pain. Last May, I had an XLIF, and they fused L1 and L2. To say that the pain increased is an understatement - I would give anything to feel how I felt pre-XLIF. It's awful. I can't function.

    So, now I have surgery scheduled with Dr. Michael Vitale and Dr. Peter Angevine at Columbia in NYC. They're planning on fusing T-12 to sacrum with pelvic fixation.

    I'm scared, though I feel that this surgery is necessary to have any hope that I can regain some quality of life. You've all been so inspiring, so, thank you.

    One question: has anyone else been fused young, where the surgeons didn't really correct the curve? I understand that some correction was achieved during my first fusion, but my curve is still around 45-50 degrees (stable, hasn't progressed since I was 7). It's frustrating to accept what was standard practice in 1992, and I wonder what my spine would be like if I had the surgery today.

    Thanks!

    Lindsay
    Hi Lindsay

    I know exactly how you feel with reference to your first surgery. I'm 27 and live in the UK. I was diagnosed with scoliosis at the age of 12. I don't know the exact degrees but I have an S shape curve. The lower curve was bigger, whilst they debated a full rob they hoped that by putting a rob on the bottom curve it would pull in and correct the smaller one at the top. Sorry I don't know the sections of my spine (my surgeon never told me them). The curve was slightly improved, I got a few inches taller and the pain improved so much. I so wish they had decided on a full rob though!
    I was taken off the out patient list at the age of 21, my curves hadn't got any better but no worse either. The pain became unbearable in 2010, my rib hump was getting bigger and my rib cage at the front right was protruding so I was referred back to my surgeon.
    My top curve didn't get better, it has now progressed to 104 degrees and due to the rotation is pulling the bottom curve out, basically reversing what the rob was doing! so frustrating and upsetting, I kept thinking if only they had put a full rob in but where will that get me :-)
    I like you are just trying to be positive. I don't know about your correct but my surgeons think that will a full fusion with possible pelvis fusion they can reduce my curves to less than 40 degrees and get them as balanced as possible with an increase in height of approx 3-4 inches. I'm so excited at the thought, especially after hearing so many people on the forum saying they are virtually pain free and pics of their post surgery x rays and body pics are amazing. I'm also scared to death but at least we've had previous surgery so know to some extent what to expect.
    I'll keep my fingers crossed for your surgery to be quick! i've been waiting 20 months now so am now hoping to be in before Sep.
    27 yr old Female.
    Scoliosis since 12yrs, fusion to lower curve in 1998, costioplast 2001 and further corrective surgery 26 July 2012.
    Now the proud owner of a very straight spine. T1- L5 fusion.
    Mr Dunsmuir, Orthopaedic Surgeon, LGI Leeds.

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