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Thread: 2 surgery options- Major or semi major decision to make- Please advice

  1. #1
    Join Date
    Jul 2014
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    28

    2 surgery options- Major or semi major decision to make- Please advice

    I am 56 yrs. old. Very active. I had a fusion in 1979 with the Harrington rod, in a body cast for 10 months. Did well till 3 yrs. ago. 2014 was bad. Lots of pain. Went to the Southeastern Spine Institute in Mount Pleasant, SC. I have flat back syndrome. My bottom vertabre's are messed up bad. I have seen 2 of the team so far. They both agree that before we consider the pedicle subtraction osteotomy, that I may be a good candidate for the lesser of the 2 evil surgeries. Instead of a 14 hour surgery, this is a 8 hour one. Going thru the front and a little thru the back not much though. I have a 15 degree hunched over thing going. Doctor said the PSO surgery was very complicated. Major blood loss. He said my damage and pain is coming from the lower back beneath the rod. SO they would repair that only. He said I may still need the PSO later, but because it was so complicated why not take a chance with this. I will lose my job with the PSO and a year off from work. That is a key factor also. also insurance is thru my job and I will have to pay for that for who knows how long. I am leaning towards maybe going with the lesser surgery. He said that after the repair has been made , I may get enough pain relief that I may be able to stand up straighter. Any advice from others who have had this or the PSO surgery done?

  2. #2
    Join Date
    Mar 2008
    Location
    Chicago-"land"
    Posts
    157

    Hi Sheila C

    I am facing revision surgery as well.

    For both my first surgery and this revision surgery I will have, I interviewed surgeons. Basically, that's what it is - you have a list of questions (you already do have a good list going) and find the absolute best in your area. You are hiring him/her to do a job; a major job that will dramatically affect the rest of your life. Then you get as many opinions as possible and choose the surgeon who has a plan that makes sense to you medically. IMHO that's more important that a current job because what surgery you have will affect you forever. Word to the wise; if your company offers a long term disability plan and you're not on it, get on it asap - you never know.

    I interviewed 5 surgeons for my first and 3 for this revision. I've made my choice and am confident in this one.

    Perhaps others on the forum who live in your area can make some recommendations. There used to be a forum list of doctors/hospitals that were good and ones to avoid (basically peoples opinions) but we can get quite smart on our own with a ton of research. Do your homework and I wish you the best!
    Susan
    XLIF/Posterior Surgery 6/16/08. Fused T10-L5 in CA by Dr. Michael Kropf (don't go there unless it's simple, I hear he's at Cedar's now). Very deformed, had revision w/5 PSO's, rods from T-3 to sacrum including iliac screws, all posterior, 5/23/16 with Dr. Purnendu Gupta of Chicago.


    Owner of Chachi the Chihuahua, So Cal born and bred, now a resident of 'Chicagoland' Illinois. Uh, dislike it here....thank God there was ONE excellent spine surgeon in this area.

  3. #3
    Join Date
    Jul 2014
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    I wish I had some others to go to for a 2nd opinion in my area or close to, but I do not.

  4. #4
    Join Date
    Mar 2008
    Location
    Chicago-"land"
    Posts
    157
    Quote Originally Posted by sheila C View Post
    I wish I had some others to go to for a 2nd opinion in my area or close to, but I do not.
    You may have to travel. If you're stuck in an HMO, see about changing your insurance or talk to your human resource person. If you can't change now due to open enrollment periods can you hang on 1 more year? This is just way too important to leave decisions up to only one group of spine surgeons! Already you're not happy with them and frankly you need to know all the specifics of your condition. "A 15 degree hunched over thing" could be kyphosis, or a scoliosis curve. Good thing you know what a PSO is but that may be the best thing overall for you - but it needs a top notch surgeon. "Doctor said the PSO surgery was very complicated". Well, he is right; but here's what my doctor said, "I do these all day long" very mildly and supportively.

    Please ask a ton of questions to both the doctors and here and really know all the specifics of your condition and possible ways to fix. I like to imagine in sort of a cartoonish way my spine, and what the dr. is explaining. Then I get to researching.

    Just 4 hours away from me is a Dr. considered to be pretty much the God of Spine surgery. I could fly there and fly home (first class only - comfort) but the follow ups would be difficult and I'd have no family support at the hospital. Yet, I just chatted with a woman who had that very same Dr. do her surgery because of his expertise and he was 18 hours away from her. All things are possible. Expensive? yes, but what's your body worth to you?

    I deliberately chose a small group in my PPO for the first consult. He was so nice. He readily admitted he could do the surgery but his hospital didn't have the resources he would need. He also said I needed to be in the top 5% of spine surgeons in the country as mine is complicated. He gave me the names and he was right on. Funny, the one I thought was going to be the best at a hospital known for ortho practice, was not one I'd chose at all. He's perfectly qualified, but not for me.

    My daughter flat out asked me, "Mom, how long do you think you have left to live?" I was surprised but I said I'd like to make it to 85. That gives me 28 more years. I do not want to spend them in a wheelchair or on a scooter.

    One other thing, I recall I ran an internet search "the top 100 spine deformity surgeons" and I got such a list. Do the same and search the forum for doctors. You may be surprised. I wish you the very, very best.
    Last edited by Chihuahua Mama; 12-17-2014 at 02:50 PM. Reason: correction
    Susan
    XLIF/Posterior Surgery 6/16/08. Fused T10-L5 in CA by Dr. Michael Kropf (don't go there unless it's simple, I hear he's at Cedar's now). Very deformed, had revision w/5 PSO's, rods from T-3 to sacrum including iliac screws, all posterior, 5/23/16 with Dr. Purnendu Gupta of Chicago.


    Owner of Chachi the Chihuahua, So Cal born and bred, now a resident of 'Chicagoland' Illinois. Uh, dislike it here....thank God there was ONE excellent spine surgeon in this area.

  5. #5
    Join Date
    Oct 2014
    Location
    Arizona
    Posts
    112
    Quote Originally Posted by Chihuahua Mama View Post
    You may have to travel. If you're stuck in an HMO, see about changing your insurance or talk to your human resource person. If you can't change now due to open enrollment periods can you hang on 1 more year? This is just way too important to leave decisions up to only one group of spine surgeons! Already you're not happy with them and frankly you need to know all the specifics of your condition. "A 15 degree hunched over thing" could be kyphosis, or a scoliosis curve. Good thing you know what a PSO is but that may be the best thing overall for you - but it needs a top notch surgeon. "Doctor said the PSO surgery was very complicated". Well, he is right; but here's what my doctor said, "I do these all day long" very mildly and supportively.

    Please ask a ton of questions to both the doctors and here and really know all the specifics of your condition and possible ways to fix. I like to imagine in sort of a cartoonish way my spine, and what the dr. is explaining. Then I get to researching.

    Just 4 hours away from me is a Dr. considered to be pretty much the God of Spine surgery. I could fly there and fly home (first class only - comfort) but the follow ups would be difficult and I'd have no family support at the hospital. Yet, I just chatted with a woman who had that very same Dr. do her surgery because of his expertise and he was 18 hours away from her. All things are possible. Expensive? yes, but what's your body worth to you?

    I deliberately chose a small group in my PPO for the first consult. He was so nice. He readily admitted he could do the surgery but his hospital didn't have the resources he would need. He also said I needed to be in the top 5% of spine surgeons in the country as mine is complicated. He gave me the names and he was right on. Funny, the one I thought was going to be the best at a hospital known for ortho practice, was not one I'd chose at all. He's perfectly qualified, but not for me.

    My daughter flat out asked me, "Mom, how long do you think you have left to live?" I was surprised but I said I'd like to make it to 85. That gives me 28 more years. I do not want to spend them in a wheelchair or on a scooter.

    One other thing, I recall I ran an internet search "the top 100 spine deformity surgeons" and I got such a list. Do the same and search the forum for doctors. You may be surprised. I wish you the very, very best.
    You have piqued my curiosity! I want to know who is this God of Spine Surgery!!!
    Before 39* lumbar at age 18, progressed to 74* lumbar and 22* thoracic age 55
    ALIF Jan 13, 2015, PLIF Jan 15, 2015 with Dr William Stevens, Honor Health
    Fused T-7 to S-1 with pelvic fixation

    After 38* lumbar

    Xrays
    Before: http://www.scoliosis.org/forum/attac...7&d=1414268930

    After: http://www.scoliosis.org/forum/attac...6&d=1424894360

  6. #6
    Join Date
    Jul 2014
    Posts
    28
    I live in Beaufort, S.C. Does anyone know if any spine doctors who do the revision surgery near me? I do not have any short term on long term disability thru my job or insurance. I am going to the disability office and getting forms to take to my doctor to fill out and we will see what happens. I will have to go on COBRA after 60 days my blue cross rep said. Which means I will pay my employer each month for my insurance. And who knows if I will have to go thru the probation period again to go back on after I return to work and we have a 6 month waiting period if I do have to wait. I have been here 15 years at my job. A huge factor in deciding what surgery to have is the recovery time difference in the two. I want a 2nd opinion. I just do not know where to go. Someone said there is a doctor 6 hrs. away from me in Raleigh, N.C. named Dr. Hey. Does anyone know of him?



    Quote Originally Posted by Lizardacres View Post
    You have piqued my curiosity! I want to know who is this God of Spine Surgery!!!

  7. #7
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,793
    Quote Originally Posted by sheila C View Post
    I live in Beaufort, S.C. Does anyone know if any spine doctors who do the revision surgery near me? I do not have any short term on long term disability thru my job or insurance. I am going to the disability office and getting forms to take to my doctor to fill out and we will see what happens. I will have to go on COBRA after 60 days my blue cross rep said. Which means I will pay my employer each month for my insurance. And who knows if I will have to go thru the probation period again to go back on after I return to work and we have a 6 month waiting period if I do have to wait. I have been here 15 years at my job. A huge factor in deciding what surgery to have is the recovery time difference in the two. I want a 2nd opinion. I just do not know where to go. Someone said there is a doctor 6 hrs. away from me in Raleigh, N.C. named Dr. Hey. Does anyone know of him?
    Do a search here for LLOYD HEY. There are plenty of previous conversations.
    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
    ---------------------------------------------------------------------------------------------------------------------------------------------------
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  8. #8
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Dr Lloyd Hey is very good. He is in Raleigh, NC
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

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