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Thread: Lumbar Revision- Pain & Degeneration

  1. #1
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    Lumbar Revision- Pain & Degeneration

    My 17 yr old daughter is looking at revision surgery due to severe and chronic pain in her legs. She had a thoracic and lumbar fusion in 2002 but they left the bottom 3 vertebrae unfused for mobility. The new surgeon says it should have been fused in the beginning and is likely the cause of the pain. However multiple diagnostic tests have shown only minor impingement of nerves from degenerating discs and continued curving of the remaining vertebrae. She's done epidural injections, PT and is working with pain mgmt, but has been living on pain killers since September '09.

    My question is, has anyone experienced similar issues and had surgery for it? Do most people have fusions that include the entire lumbar area and what kind of mobility are you left with and what about residual pain? For anyone who had the corrective surgery can you give us the good news that it can be a full "fix"?

    She's mentally done with the pain and I fear her depression is getting the best of her. At what point do you just go for the surgery in a desperate attempt to get out of pain as nothing else is working?

    She's about to graduate high school and wants to go to university in August. She wants this behind her and to start her life already!!

    Thanks for your feedback.

  2. #2
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    I'm sorry to hear this.

    I hope other people who have had extensions respond to your post, specifically on the issue of pain resolution.

    There is a girl on the SSo forum who seemingly had a double major curve but they only fused the top curve. She has a boatload of painful conditions in the lumbar and it was not too long after her surgery (a year maybe?). I haven't followed her case but wonder if she will get a revision which I assume will be an extension. It would be interesting to know if she had.

    For cases that include lumbar in kids, I am getting the impression that at least some surgeons will try to avoid going down too far even for structural curves. I have read at least three testimonials of kids with seemingly doubly major curves wherein the fusion didn't even go to L1. That is extremely odd given that L1 is often included even in single thoracic fusions. There must be a reason.

    I wonder if there are any data whatsoever on how often this gamble pays off. For example, I have read on this forum that short term bracing (a few months) for even severe trunk shifts due to not fusing low enough sometimes is effective. I have to wonder about that as I think the vast majority of patients and their parents would choose to not fuse the lumbar and wear a brace short term rather than fuse the lumbar also. If that worked in the majority of cases then it might actually be unethical to fuse into the lumbar for double major curves.

    I think it would be very good for parents to know the risk of pain, shifting, revision/extension when consciously choosing to not fuse all or part of a structural curve. For some, the risk will be worth it. For others, the idea of another surgery is a deal breaker. But without knowing the odds, it is impossible to make the decision.

    It was news to me that some surgeons were not fusing all of the structural curves in some patients. The fact that they do this must mean they win that gamble some of the time, yes?

    Good luck to your daughter.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  3. #3
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    Getting fused the rest of the way down could help. I was fused to L5 but my fusion grew to S1 on its own. I had to get some of that removed because it was pressing on my spinal column. Being fused down to S1 is like being 8 months pregnant for mobility. I carried 2 kids full term and they were both almost 9 pounds. I had no problems with my back during pregnancy. The fusion and rod made it easier to carry a baby. If she is having some disc degeneration now, it will only get worse. A second surgery should not be as bad as the first.
    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

  4. #4
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    I don't know if this is what you are referring to or not, but six years ago I had a slipped disc (don't recall the level), and I was fused at two levels, above and below, and in a week I'm undergoing major surgery for my scoliosis curve which has to be nearing the 100+ mark by now. At the time of my slipped disc there was no question as to what we would do, fuse the two levels, 7 screws implanted, and not worry about the scoliosis for now. But, today, we worry that may have made the scoliosis really take off and get to the degree it is today. Not to know at that point, as I didn't have a choice. The pain was way too much to endure! I think you just have to do what you have to do - if docs decide not to fuse at some level you have to go with that. You never know. We have to trust them at some point. I know for me, my local doc feels pretty bad that he may have possibly made my scoliosis curve worse by fusing the two levels six years ago, but at that time we had no choice, so.....I just thank my lucky stars there are folks like Dr. Lenke who can fix our ever so curved spines and help us have a totally new outcome on life! Just imagine - not living from pain pill to pain pill. Not having to run home so I can take a pill. I can't even fathom!!!!

  5. #5
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    Thanks for all the feedback. It looks as though surgery may be her only option. We should know more Tuesday. Do any of you know the if the complication of flatback syndrome is an issue with a full lumbar fusion? She's already convinced that having children will not be an option for her. I hate to see her already compromising her future. It was good to hear Rainbow carried 2 children full term. Do you mind me asking if they were c-section?

  6. #6
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    Quote Originally Posted by BethF View Post
    Thanks for all the feedback. It looks as though surgery may be her only option. We should know more Tuesday. Do any of you know the if the complication of flatback syndrome is an issue with a full lumbar fusion? She's already convinced that having children will not be an option for her. I hate to see her already compromising her future. It was good to hear Rainbow carried 2 children full term. Do you mind me asking if they were c-section?
    Linda will correct me but I think flatback is impossible with the instrumentation in play these days. It is limited entirely to Harrington rods and perhaps other historical use instrumentation as far as I know.

    Just reading testimonials, I would be shocked if a surgeon said your daughter could not have children naturally. I can't think of a single testimonial on any forum that states otherwise.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #7
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    Sharon,

    Flatback isn't impossible. I wish it was.

    I don't understand all the factors that lead to sagittal imbalance, but I know I sat and cried over a friend's x-rays last night who obviously has it. The condition still happens, and I want to know why.

    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  8. #8
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    Quote Originally Posted by txmarinemom View Post
    Sharon,

    Flatback isn't impossible. I wish it was.

    I don't understand all the factors that lead to sagittal imbalance, but I know I sat and cried over a friend's x-rays last night who obviously has it. The condition still happens, and I want to know why.

    Pam
    That is incredible. Does she have screws at each level? How is the bend removed from the lumbar portion of the rods to produce a flat back??? I thought you need special tools to bend those rods.

    Wow.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  9. #9
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    Quote Originally Posted by Pooka1 View Post
    Linda will correct me but I think flatback is impossible with the instrumentation in play these days. It is limited entirely to Harrington rods and perhaps other historical use instrumentation as far as I know.

    Just reading testimonials, I would be shocked if a surgeon said your daughter could not have children naturally. I can't think of a single testimonial on any forum that states otherwise.

    Good luck.
    Hi...

    Flatback is definitely possible, but thankfully, it's pretty uncommon. If one chooses a surgeon who has a lot of experience with long, instrumented scoliosis fusions, the risk of flatback has got to be pretty close to 0%.

    Degeneration below the original fusion is one of the known risks of scoliosis surgery. The fact that it occurred so quickly after the original surgery seems to me that the original selection for fusion may have been poor. Beth, it sounds like surgery may be your daughter's best option. Just be certain that she's got a surgeon with a lot of experience with scoliosis revisions.

    Good luck.

    Regards,
    Linda

  10. #10
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    Quote Originally Posted by Pooka1 View Post
    I thought you need special tools to bend those rods.
    Sharon, the rods are bent just prior to insertion, and often tweaked after insertion. I think it's far more of an art than a science. There are several types of surgical tables, but I think the type most commonly used has a section that drops down in the middle, creating lordosis in the patient while prone. If the table isn't dropped far enough, or if the patient's spine is too stiff, not enough lordosis is created. My understanding is that it's not very easy to know how much is too little, enough, or too much.

    Here's a refresher course on the logistics of scoliosis surgery:

    http://www.youtube.com/watch?v=OGCGr...eature=related

    --Linda

  11. #11
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    Thank you so much for this incredibly helpful information. We see the pain doc and hopefully surgeon tomorrow and will probably begin planning the next step. With her initial surgery I got a few surgical opinions. I am very happy with her current surgeon Dr. Michael Jofe, but wonder if there are alternative views on treatment and if I should get another opinion. I'm working now on our list of questions to take with us.

    Her h.s. graduation is in May and I wonder if any of you have recovery experience from a revision like this. Recognizing everyone is different I wonder if it's too much to expect her to attend graduation and university in August.

    I'm sure it's been said before, but you gals are heaven sent. Doctors have a limited perspective and no where else could we get this much patient perspective. Thank you, thank you.

  12. #12
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    Oops I have another question! From reading this site I see Dr. Boachie mentioned as a top guy. I am perfectly willing to travel to NYC if in fact he's the best (we live in Ft. Lauderdale, FL area). Are most of these surgeries fairly typical and/or does having an opinion from Boachie make the decision more thorough? We have family in NY/NJ so time/distance isn't a factor.

    I also see mixed reviews of Shufflebarger (he's only doing kids now anyway) and reference to Eismont and Brown. Your feedback is amazing!!

    Thanks!

  13. #13
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    I think your surgeon will be able to say how this type of revision might differ in terms of recovery from the initial fusion. I think the recovery might be similar or shorter than the original operation because she will have less levels fused this time.

    If it were my kid, I would schedule it for right after graduation. I think three months is enough time to recover and then attend college but you're surgeon will of course have a better idea.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  14. #14
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    Hi Beth, gee I feel sorry for your daughter, 18 is so young to be suffering from this. Just on a happier note and remembering I have the old hardware Harrington rods in my back, I had two children naturally and was lucky enough to have absolutely no problems. My doctors actually said they thought the rods and fusion helped me with the labour and birth. I know we are all different but I just thought you may just need a little encouragement as well as your daughter, I wish you all the very best.

    Lorraine.
    Operated on in 1966, harrington rods inserted from T4 to L3, here in Australia. Fusion of the said vertebrae as well. Problems for the last 14 years with pain.
    Something I feel deeply,"Life is like money,you can spend it anyway you wish, but can only spend it once.

  15. #15
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    Hi Beth...

    I think Dr. Boachie is definitely regarded as the one of the top 5 scoliosis revision surgeons in the world. Unfortunately, he doesn't accept insurance reimbursement, so the surgery is often somewhat more expensive with him than with others.

    Nate Lebwohl (Miami) does a lot of revisions.

    Regards,
    Linda

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