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Thread: Progression after first surgery

  1. #1
    Join Date
    Aug 2007
    Location
    Auckland, New Zealand
    Posts
    185

    Red face Progression after first surgery

    Hi everyone,
    I'm a newbie to the forum, although I have been reading through almost everything to gain an understanding of others experiences with this condition. It definitly confirmed what I had always suspected, that there are no two people alike.
    I am 26 years old, and live in Auckland, New Zealand. I'm currently full-time doing a doctorate in clinical psychology, trying to juggle writing a thesis with clinical practice.
    I was diagnosed age 12 with a 60 degree curve, and we made the decision not to have surgery because it wasn't causing me too much of a problem, and we didn't know whether it would be the right thing to do.
    I had my surgery at age 20 (year 2000) just after finishing my nursing degree, when my curve was 70 degrees. I think the correction went to about 40 degrees, but I'm not looking at my x-rays right now. The correction was using an anterior approach with 2 rods, from T9 to L2. I have had ongoing pain since the surgery, but I did feel that it improved things for me considerably. The surgeon didn't get up as high as he would have liked in surgery because I had been in a considerable length of time. So at the top of the fusion there was still a portion that was un-corrected but it was only mildly curving and we crossed our fingers and hoped it didn't progress more.
    Since then we have been waiting and watching, and I have been on regular reviews, and we have just been watching it progress. Now I am at the point where I have been offered surgery and am considering it, however am struggling with the decision.
    The revision surgery adds another 3 thoracic vertebrae into the fusion, taking a posterior approach and using a graft from my hip. He has considered adding in one more lumbar vertebrae also.
    The things I am considering are
    1) I have pain at present, but I can live with it
    2) I am only 26, and the implications of the rest of my life with or without this are huge
    3) it is likely to keep progressing since if anything it has sped up in movement
    4) it is better to have it now while my spine is still balanced, than later when it is too much of a problem to fix.
    5) there isn't much bone to anchor more screws in, given my existing fusion with instrumentation.

    I guess I don't have a question as such, but am interested in hearing from people who can help me make this decision. I searched through the forum and couldn't find anyone who had a similar experience with progression after surgery, although I doubt I am the only one. Also, I haven't been able to find any information through other means such as medical journals or online searching.

    I'm trying to stay positive with this decision, it's just hard when there is no clear choice. Although it seems clear cut that it is progressing and I should stop it, I really am struggling with the thought of more surgery especially as the outcome long term seems so unclear.

    I think that if I choose this surgery, it should be at the end of this year or early next year because there doesn't seem any advantage in waiting and watching it progress further, and it fits in best with my studies and plans for future children/career if I do it sooner.

    I'll post my angles etc when I can.

  2. #2
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    progression after surgery

    I progressed after an old form of scoliosis surgery done in 1956. No hardware was used so by age 59 I had triple curves and respiratory impairment. That surgery was T-4 to L-2. My revision done 5 years ago at age 60 was T-4 to sacrum.
    There is help when conservative measures fail however choice of surgeon with experience dealing with prior fusions is paramount.

    This whole business is scary but I did bite the bullet and had the revision. I've never regretted it despite the long recovery period that goes with it.
    I do not have pain and am still working in my profession.
    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

  3. #3
    Join Date
    Aug 2007
    Location
    Auckland, New Zealand
    Posts
    185
    Thanks for your reply, I guess when you get to the stage that you are having identifiable difficulties related to your scoliosis it is still a difficult decision, although clearer. I appreciate you taking the time to reply to my post.
    I guess with me I know that I should have the surgery before I get to the stage that my spine is un-balanced, and definitly before I get respiritory complications.
    I have a lot to think about, and I am definitly thinking the surgery is a good idea. It doesn't make it any easier though!

  4. #4
    Join Date
    Jul 2005
    Location
    California
    Posts
    269
    I also had progression of my curve below my original fusion (T4-L2, 02/05) from about 20* immediately after surgery, to 35* before revision. I had another surgery (12/06) to extend the fusion to L5 because I herniated a disc between L4-5 most likely due to the progression and added stress caused by it.
    If you have any questions feel free to ask. Good luck if/when you decide to have surgery.

  5. #5
    Join Date
    Aug 2007
    Location
    Auckland, New Zealand
    Posts
    185
    Thanks, that's really helpful to know also. The fact that you had problems caused by the stress on your spine from the progression suggests to me that while I am not having too much problems now (although some pain), it could cause problems later on.
    I've kindof been looking for an 'empty reassurance' that I don't need to have this done and things will miraculously resolve, but it's not really looking that way. I was hoping that if I exercised I could stop the progression, but actually I'm a shocker with getting out the door to go to the gym or pool!
    It's pretty important that I keep up my physical fitness and swim regularly, I'm a bit lame as far as being motivated! And I need to loose approx 4kg to help take some of the stress off my lower back. I have spondliolisthesis in my lower back, so getting my weight down will help too. I'm a bit hopeless!

  6. #6
    Join Date
    Aug 2007
    Location
    Auckland, New Zealand
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    185
    Well, today I'm off to get some counselling. I had been coping really well with my back until finding out about the curve progression. I''ve been finding it a real struggle all this contemplation about surgery. It's more difficult because there are so many things that I am worrying about! In an ideal world I'd fly to the USA and see Dr Boachie (that's totally out of reach so I won't even go there) because we just don't have the population for our surgeons to have a lot of experience with revisions.
    My partner and family are supportive to an extent, but they are just shutting me down with a lot of the things that I'm worrying about. The same thing happens with my friends, so now I'm putting on a brave face and not talking about it at all. People reassure me by saying that 'It will be fine'. But that doesn't really acknowledge that I have had major spinal surgery before and know what it entails. At least this time it won't be so bad as it's posterior. I've taken to not talking about it and keeping it in, but sometimes the tears just come and I push it out of my mind.
    I know I'm being quite open here about how I'm feeling but I am needing support. I know that there are lots of people out there with similar experiences, but it is easy to feel like you are going through this alone. This is something I have been pushing aside and ignoring, just getting on with things, but it has gotten on top of me.
    1994 curve at age 13, 70 degrees, untreated
    2000 Anterior fusion with instrumentation T9-L2, corrected to 36 degrees, 14 degree angle between fused and un-fused thoracic spine.
    2007 26 degrees junctional scoliosis
    Revision surgery, 6th December 2007 T4 to L3, Posterior approach.
    msandham.blogspot.com

  7. #7
    Join Date
    Nov 2004
    Location
    Berkeley, California
    Posts
    206
    NZ Girl-

    This is THE place to express your fears; many people here know just what you are going through. My surgery is 4 months out and I've been able to keep from worrying by being really busy otherwise, but that's just me - who knows when I'll melt down (and I'm sure I will)!

    Many posts of this forum have been about families appearing to be shutting down emotionally; very possibly they are as afraid as you are and they don't have a better way to express it.

    These are complex surgeries and hardly anyone, outside of the range of us with spinal deformities, has any idea what is all about. Please continue to use this forum to express your frustration and fears - there is so much support from this group. I could not have made it this far had I not been lurking on this site for 3 years.

    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.

  8. #8
    Join Date
    Aug 2007
    Location
    Auckland, New Zealand
    Posts
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    Thank you for your kind words, I found it really helpful today at the psychologist as far as understanding what the issues are that I am worrying about.
    I usually just take this stuff in my stride, but I think having a second surgery (or prospect of one) makes you re-evaluate stuff and think about the big picture as far as the rest of your life goes.
    I couldn't believe it that I cried throughout nearly the whole hour, which is a bit embarrassing! But at the same time it felt good to be able to talk about it without having to worry about the other persons feelings towards you or about how your pain affects them. I'm a bit of a cryer... happy, sad, all tear-worthy moments! but at other times no-one would have a clue what was happening with me because I can keep a veneer of cool calm and collected!
    1994 curve at age 13, 70 degrees, untreated
    2000 Anterior fusion with instrumentation T9-L2, corrected to 36 degrees, 14 degree angle between fused and un-fused thoracic spine.
    2007 26 degrees junctional scoliosis
    Revision surgery, 6th December 2007 T4 to L3, Posterior approach.
    msandham.blogspot.com

  9. #9
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    495
    Hi nzgirl

    I can only relate to your feelings as a parent but I can tell you I've shed many tears over my daughter's impending surgery. I'm handling it much better now since we've had some time but I notice I'm much, much more emotional the week before my period (not just over this, but getting angrier at little things that normally wouldn't bother me). Just something to think about. Once I start, I'm usually just fine, I feel like a lunatic sometimes.

    Take care. You're not alone in this journey.

  10. #10
    Join Date
    Apr 2004
    Location
    Sydney Australia
    Posts
    64

    second opinions

    Hi NZ,
    Maybe you could get another opinion in Sydney or Melbourne. I live in Sydney AU and had an appointment with Dr Boachie for a second opinion while I was visiting the US. No surgeon in Philadelphia PA would see me without US health insurance, even though I was willing to pay for the visit.
    My surgery, (done in Sydney) was also not finished. The doctor was supposed to fuse to T3 but only went up to T8. I have an appointment in a few weeks for a two year post surgery visit. I was told that my uncorrected curve would not progress.

  11. #11
    Join Date
    Aug 2007
    Location
    Auckland, New Zealand
    Posts
    185
    Thanks for the support. Thats interesting to hear that you saw Dr Boachie, I'd been having thoughts about going to Australia to see a surgeon there! The whole thing is getting pretty costly though, my private health insurance here has added onto everyones policies that 'scoliosis' is not covered. I'm applying to them anyway, and am going to protest because I think it is unethical. Meanwhile, as our public system is geared up for super end-of-the-line surgery and emergencies... I'm left with no option but to have to pay for it myself (well, my parents have kindly offered). The whole thing is estimated to be $50k (NZD). So it's probably out of my reach to go and pay Dr Boachie a visit. (I can't even afford the flights!). But I think realistically, I'm probably just being a princess and wanting the best, where my surgeon is the best in NZ for this surgery. Plus I don't think I'm severe enough to warrant it. I could send my x-rays to him and ask for an opinion, but I would still have to have the surgery here. I haven't ruled it out. I'm sure my surgeon would do that for me if I asked him.
    I'm now about 95% sure I'll get the surgery, and am starting to process it and get used to the idea. I'm feeling a lot more positive about it since I saw the psychologist, I think it was helpful to be able to say stuff out loud that I was thinking. I've started doing the 'pilates for fragile backs' but I'm pretty rubbish at it so far! I'm going to persist, and keep swimming.
    Last edited by nzgirl; 08-08-2007 at 06:50 AM.
    1994 curve at age 13, 70 degrees, untreated
    2000 Anterior fusion with instrumentation T9-L2, corrected to 36 degrees, 14 degree angle between fused and un-fused thoracic spine.
    2007 26 degrees junctional scoliosis
    Revision surgery, 6th December 2007 T4 to L3, Posterior approach.
    msandham.blogspot.com

  12. #12
    Join Date
    Jun 2006
    Location
    Euharlee, Georgia
    Posts
    449
    Ask your surgeon about using donor bone instead of taking it from your hip. I had my bone from my hip and have had a lot of pain over the years from that. My daughter's surgeon said he only uses donor bone because of the hip pain that occurs when the bone is taken from the hip. She refers to her donor bone as Sir Francis. Then when she does anything wrong she says it was Sir Francis that made her do it!
    T12- L5 fusion 1975 - Rochester, NY
    2002 removal of bottom of rod and extra fusion
    3/1/11 C5-C6 disc replacement
    Daughter - T7 - L3 fusion 2004

  13. #13
    Join Date
    Aug 2007
    Location
    Auckland, New Zealand
    Posts
    185
    Sir Francis! I love it! I will ask my surgeon about that, because I have heard hip grafts are particularly painful. My last surgery used some rib bone, I still have plenty of ribs left! But I know you kindof need them (!) I could ask him to do a 'Cher' plastic surgery and take out my two bottom ribs to make my waist look nice (I'm joking, that seems crazy!). I imagine there are increased chances of complications using donor bone, but I'll do a bit of research.
    1994 curve at age 13, 70 degrees, untreated
    2000 Anterior fusion with instrumentation T9-L2, corrected to 36 degrees, 14 degree angle between fused and un-fused thoracic spine.
    2007 26 degrees junctional scoliosis
    Revision surgery, 6th December 2007 T4 to L3, Posterior approach.
    msandham.blogspot.com

  14. #14
    Join Date
    Jun 2006
    Location
    Euharlee, Georgia
    Posts
    449
    There has been a lot in the news about donor bone here because of some sick people stealing bones from a funeral home and selling them for donor bone. My daughter's doctor explained that the bone is tested, processed and completely safe. You have a higher risk of infection from surgery than from getting anything from the donor bone.
    T12- L5 fusion 1975 - Rochester, NY
    2002 removal of bottom of rod and extra fusion
    3/1/11 C5-C6 disc replacement
    Daughter - T7 - L3 fusion 2004

  15. #15
    Join Date
    Aug 2007
    Location
    Auckland, New Zealand
    Posts
    185
    I am stunned! I saw something probably on CSI about people doing that, but I thought it was fictitious! Apparantly using donor bone is much more common in the USA than here, and I guess that would increase demand on the donor supply. I will ask my surgeon about it, it sounds like something that they would only do in exceptional cases here though.

    I talked a lot to my PT yesterday, and she was explaining how most people have a large buffer, that when they have an injury or stop exercising they are ok and arn't set back too far. But I have a small buffer, and it only takes a little to throw me into a lot of pain and have to take time off from the pool.

    I've made a decision about surgery, I will have it. I now 'just' have to book it. I am thinking that November would be a good time for me. It is the start of summer here, but typically the nicest weather is around feburary. It fits in best with university stuff as well. I'm not feeling as worried now, and am more certain of my decision. It all got suddenly very real at the start of the week but now I'm much better. Thanks to everyone who has been supporting me on this forum.
    1994 curve at age 13, 70 degrees, untreated
    2000 Anterior fusion with instrumentation T9-L2, corrected to 36 degrees, 14 degree angle between fused and un-fused thoracic spine.
    2007 26 degrees junctional scoliosis
    Revision surgery, 6th December 2007 T4 to L3, Posterior approach.
    msandham.blogspot.com

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