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Thread: Next surgery coming up...just saying hi!

  1. #1
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    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
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    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
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    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
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    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
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    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
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    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 05:41 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
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    Mar 2012
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    That's amazing! You're an inspiration!

    Quote Originally Posted by titaniumed View Post
    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 Thatís me in the red jacket.

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

    Ed

  8. #8
    Join Date
    Jan 2009
    Location
    Ames, Iowa
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    Lindsay--
    Perfect name--my oldest daughter of 4 girls is Lindsay. I can't say I was fused young unless 57 makes the cut so can't really respond but wanted to say welcome and hope you get lots of answers and support. Janet
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

  9. #9
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    Sep 2003
    Location
    Northern California
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    6,801
    Hi Lindsay...

    You have a huge amount of rotation in your lumbar spine. If I were you, I would question whether they plan to get you derogated during surgery. Your case is a little unusual, so I can't really give you guidance in terms of whether correction can be achieved, but I would definitely recommend that you get a second opinion if you haven't already done so. You're in an area with a lot of great surgeons, who have done a lot of revision work. I would check out:

    Frank Schwab
    Baron Lonner
    Oheneba Boachie

    Best of luck.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  10. #10
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    Yes, Janet, perfect name!

    Linda... as far as the rotation, I've never had a rib hump - even before the first fusion. Could that indicate that maybe there isn't a great deal of rotation? I only ask because of all the doctors that have seen or treated me, that hasn't been an issue that was ever really focused on.

    Thank you so much for those names. The longer I go without a surgery date, the longer I wonder if I should look elsewhere. I've looked at SRS, but still feel that the list is very broad. I live in Pittsburgh, PA. Do you know of any surgeons I could see in maybe Philadelphia or MD? I think I've seen all the good ones in Pittsburgh...LOL.

    Thanks again!

    Lindsay

  11. #11
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    Quote Originally Posted by les130 View Post
    Yes, Janet, perfect name!

    Linda... as far as the rotation, I've never had a rib hump - even before the first fusion. Could that indicate that maybe there isn't a great deal of rotation? I only ask because of all the doctors that have seen or treated me, that hasn't been an issue that was ever really focused on.

    Thank you so much for those names. The longer I go without a surgery date, the longer I wonder if I should look elsewhere. I've looked at SRS, but still feel that the list is very broad. I live in Pittsburgh, PA. Do you know of any surgeons I could see in maybe Philadelphia or MD? I think I've seen all the good ones in Pittsburgh...LOL.

    Thanks again!

    Lindsay
    Hi Lindsay...

    Your rotation is in your lumbar spine and pelvis, which is why you don't have a rib hump.

    In terms of doctors, check out Khaled Kebaish at Johns Hopkins or Todd Albert at Dupont.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  12. #12
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    Quote Originally Posted by LindaRacine View Post
    Hi Lindsay...

    Your rotation is in your lumbar spine and pelvis, which is why you don't have a rib hump.

    In terms of doctors, check out Khaled Kebaish at Johns Hopkins or Todd Albert at Dupont.

    Regards,
    Linda
    That makes sense.

    Thank you so much, Linda!

  13. #13
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    May 2012
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    United Kingdom, Leeds
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    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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