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Thread: Disc Degeneration And Scolosis - Connected?

  1. #31
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    I seem to agree with the analysis of rohrer, even if it means disagreeing from Dr. Boachie himself. Once you have a fusion, the discs that were part of the fusion are gone and now the discs below L1 will indeed be overworked and thus will increase in degeneration at a much faster rate than that of the normal straight spines population. It is a pretty clear and logical analogy. It may slow down the degeneration of the spine vs the pre existing curve, but does in no way compare to that of a normal spine's.

    Thanks Pooka for the article you sent me from Dr. Boachie, I have read it all and would like to address my thoughts..

    It seems like dr boachie will treat his patients conventionally through exercise therapy rather than surgery for degenerative scoliosis, regardless whether there is progression or not. It seems as if Dr.Boachie still believes that exercise may slow degenerative scoliosis and that a spinal fusion can be just as detrimental as simply carrying on with the condition. Only when the patient does not respond well to conservative treatment is when surgery is suggested he says.

    As for how his article came off from addressing scoliotics like me,

    it also seems that in the example he gave, he only mentions if a young child like age of 13 is fused to L1 will benefit from a lifelong free of degeneration, but not a young adolescent or adult like me with a large curve. In his article he states,

    "The adolescent or the young adult who comes in with a 60 degree scoliosis is otherwise healthy. They may have pain, but they have no stenosis, no degeneration, no segmental instability. So we measure the curve, assess the fusion levels, and fuse them to whatever levels we chose and you are done. You don't have to worry about the junctional levels until maybe 20 years later when they come in with junctional degeneration especially if they haven't been properly aligned, functional deformity may result from excessive activity causing the unfused segments to eventually go through an early degenerative process."

    In other words, in my case and age, a fusion to L1 would result in the same wear and tear that I have always been apprehensive about.

    He also mentions in his article, which was rather vague and almost sarcastic was
    "You can live the rest of your life with a 50 degree thoracic curve. If you are lucky, it won't cause pain. It won't cause pulmonary problems, no. The patient may be able to live with the cosmetic deformity, but it is difficult to live with progressive symptoms of subluxations and spinal stenosis."

    Wonder what you people think about what he meant there. Did he mean you are truly doomed to be in pain and degeneration with a 50 degree curve or that you may be able to do just fine throughout your lifetime?

    Anyways, I have tried and book a meeting with him. I am wondering if he will allow an email or skype consultation since I am not living in New York?
    31 yr old male with non-progressive Idiopathic scoliosis

    15-37 degrees- upper thoracic ( w/ left shoulder trap higher, head tilted more to the right)
    45-52 degrees- mid thoracic (to the right, w/ rib hump)
    25-30 degrees- lumbosacral curve (to the left w/ lumbar hump, right pelvis is higher than left)

    currently doing schroth exercises and counter postural techniques("side shifting")
    using rib and lumbar support belts. still contemplative about surgery.

    >>My X-ray<<

  2. #32
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    Quote Originally Posted by Jinseeker View Post
    He also mentions in his article, which was rather vague and almost sarcastic was
    "You can live the rest of your life with a 50 degree thoracic curve. If you are lucky, it won't cause pain. It won't cause pulmonary problems, no. The patient may be able to live with the cosmetic deformity, but it is difficult to live with progressive symptoms of subluxations and spinal stenosis."

    Wonder what you people think about what he meant there. Did he mean you are truly doomed to be in pain and degeneration with a 50 degree curve or that you may be able to do just fine throughout your lifetime?
    I read that three times. My best guess is he is saying you can do fine and that subluxations and spinal stenosis are not inevitable. You may hang at 50* for the rest of your life and not get those things.

    The main thing as I understand your situation is the pain is getting less and less controllable with PT, yes? So unless the pain overtakes you, you may not need fusion. That's my guess. I'd like to hear what others say.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
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    "We are all African."

  3. #33
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    Quote Originally Posted by rohrer01 View Post
    Sharon (Pooka1), I know YOUR doctor said "one stop shopping". I can't say that I agree with this because of what I see in my DIL. At age 23 she is having lumbar pain. She has a T fusion.
    Did they only fuse the T portion of a double major curve?
    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."

  4. #34
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    Quote Originally Posted by Jinseeker View Post
    I seem to agree with the analysis of rohrer, even if it means disagreeing from Dr. Boachie himself. Once you have a fusion, the discs that were part of the fusion are gone and now the discs below L1 will indeed be overworked and thus will increase in degeneration at a much faster rate than that of the normal straight spines population. It is a pretty clear and logical analogy. It may slow down the degeneration of the spine vs the pre existing curve, but does in no way compare to that of a normal spine's.
    Here are two points that come to mind.

    1. How can Boachie say this about stable over a lifetime, especially in adolescents, when the modern instrumentation hasn't been around long enough to say? My only guess is he must be extrapolating from the H rods. I am guessing that people with pure T curves who were fused only to L1 with H rods and were balanced are largely doing well. To the extent that the modern instrumentation can hyper-correct people, that can only be better. That is the only rational explanation for why I think Boachie can possibly be talking about "lifetimes."

    2. If most or all of patients with false doubles who are selectively fused through the thorax and who are necessarily left with curves in the lumbar (to avoid high left shoulder) are stable at least 20 years out, that bodes even better for the hyper-corrected folks if alignment is the key thing to long-term disc health with or without a fusion. For my one kid who was hyper-corrected and has a straight spine, there is no imbalance on the unfused discs. Her lumbar is as straight as mine. I will likely get DDD... I already have had two sports-related disc injuries. My daughter will likely get DDD. Like death and taxes, I have read DDD is inevitable if you live long enough. On the other hand, my mother lived to 84 and never had any back pain to speak of. But maybe 84 wasn't old enough. Who knows.

    Just more thoughts to throw out there.
    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."

  5. #35
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    Quote Originally Posted by Pooka1 View Post
    Where does her structural curve end? My daughter's ended at L1.

    Where does her fusion end? My daughter's ended at L1.

    My one daughter fits into the situation Boachie is addressing which agrees with what our surgeon said.
    Sorry, I haven't been on the forum as this discussion ensued. I see you asked this question twice.

    My DIL is fused from T2 to L1, if I remember looking at her x-rays correctly. She had a curve that looked a lot like Jinseeker's, except with a ton more rotation. Her actual Cobb measured 48o at this hospital, which measures very conservatively compared to others that I've been to. They only ever talked about the angle of the one curve. She was also progressing rapidly "in-brace" to which she was compliant 22-23 hours a day. So if there were a false double, it's completely gone now. Her lumbar looks great. She has some reduced lordosis because of the hypokyphosis in her T-spine that wasn't corrected to a great degree (not nearly as bad as mine). But, overall her lumbar looks GREAT. Her hips are even and her pelvis doesn't appear twisted.
    Be happy!
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  6. #36
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    Quote Originally Posted by rohrer01 View Post
    Sorry, I haven't been on the forum as this discussion ensued. I see you asked this question twice.

    My DIL is fused from T2 to L1, if I remember looking at her x-rays correctly. She had a curve that looked a lot like Jinseeker's, except with a ton more rotation. Her actual Cobb measured 48o at this hospital, which measures very conservatively compared to others that I've been to. They only ever talked about the angle of the one curve. She was also progressing rapidly "in-brace" to which she was compliant 22-23 hours a day. So if there were a false double, it's completely gone now. Her lumbar looks great. She has some reduced lordosis because of the hypokyphosis in her T-spine that wasn't corrected to a great degree (not nearly as bad as mine). But, overall her lumbar looks GREAT. Her hips are even and her pelvis doesn't appear twisted.
    Okay well then maybe the pain is from the incorrect lordosis left in the lumbar. I guess that would not fit into Boachie's comment about being aligned correctly even in the sagittal plane.
    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. #37
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    Jinseeker,

    Just out of curiosity, why do you want a conference with Dr. Boachie? It's relatively difficult to get consults with these big name doctors. He also doesn't accept insurance. It's up to you to find out if your insurance will pay and up to you to do the filing and paperwork. I would think that an insurance company might frown upon paying anything for a conference where no physical exam can be performed. I'm not convinced Boachie would grant you such a "visit", either. But, hey, let us know if he does!

    I was able to contact Dr. Hey, send him my x-rays, and talk with him over the phone and e-mail. He gave me his opinion that I would benefit from surgery for pain reduction, but no guarantees, of course. So I booked an actual consult with him and was going to travel to NC for the physical exam. He suddenly, without any logical explanation, cancelled my appointment and told me there were plenty of good doctors closer to the area where I live. But the fact that he didn't charge me to talk to me at length was nice. I don't know if he still does that or not. I heard that he is now only taking patients by referral only. You might contact his office and ask. He really is very personable and knowledgeable. I'm quite sure that he would recommend surgery for you, especially since you are so young. It would probably fit into the "saving the lumbar" from future, more rapid degeneration. He didn't mention anything to me about my lumbar. He fuses some people with pretty small curves, like in the lower 30o's. So if you're not into having surgery, he might not be your guy. However, he might also give you some food for thought even if you don't want surgery.

    There was one catch to my cancellation, though. My insurance denied paying for my consult. So, I told him I would be paying out-of-pocket. To me this is probably the real reason for the cancellation even though another reason was given to me. I do have to give Dr. Hey very high regard for the time he did spend with me at no charge. It helped give me some more insight. Since that happened, I haven't sought out another second opinion.

    I really need a doctor that I can depend on. I was really hoping that he was the one for me since he meets MY criteria for a good surgeon. If my insurance won't even pay for a consult, they surely wouldn't pay for surgery. So my visit with him would have been for a second opinion ONLY. I really wanted that second opinion so that I could build my case with the insurance company. My insurance carrier will allow me to see only one scoliosis surgeon with NO second opinions from any other specialist. I need another opinion because I found out that my heart is compressed with my 40o+ curve. I'm just not there mentally to go through that again, especially with the new diagnosis that I have of Cervical Dystonia and MD. Although compressed, my heart is functioning normally, so it's not an emergency.
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  8. #38
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    Quote Originally Posted by Pooka1 View Post
    Okay well then maybe the pain is from the incorrect lordosis left in the lumbar. I guess that would not fit into Boachie's comment about being aligned correctly even in the sagittal plane.
    I'm not sure. Many people with otherwise healthy spines have more or less kyphosis and lordosis in their spines. I'm not going to say that her lordosis is out of range for normal because it "looks" fairly normal and she hasn't been diagnosed with flat-back syndrome. You can see that she has lordosis, it's just not huge. So it's MY opinion that her lordosis is reduced. My medical records say mine is reduced (not flat-back), even though looking at me and on my x-rays you can see it's there. Hers looks about like mine, maybe a little more curve there? Do your daughters have perfect lordosis and how can you tell? There is a large range of "normal". So if a person falls into the normal range, is it absolutely normal for that person?

    I think a better surgeon would have done a better job on her. So maybe this is the reason for her lower back pain. However, every fused person isn't going to have perfect kyphosis or lordosis. They can only correct people so much. My original thought stands. This is because there are no thoracic discs to take the normal everyday impact on the spine.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  9. #39
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    Quote Originally Posted by rohrer01 View Post
    Do your daughters have perfect lordosis and how can you tell?
    Just based on the one-stop shopping for scoliosis surgery comment and that she was back in the general population for back issues. Of course the vast majority of people are driven to a doctor of back pain at some point if they live long enough so that latter statement is practically empty in my opinion. Even if 100% of fused patients later have back pain at some point, it's not the case that they probably would have avoided that had they not had scoliosis and fusion. Rather the figure I saw was ~85% of people will have back pain so bad at some point that it drives them to a doctor. That's the point. Maybe they would have been in the ~15% that never gets bad back pain if they didn't have scoliosis and a fusion but the odds are against that.

    And we always have to ask what percentage of people with big curves that aren't fused get driven to doctors for pain. If that's damn near 100% then all of this is a mute point... most people, with scoliosis or without, with treatment for scoliosis or without, will get bad back pain if they live long enough.
    Last edited by Pooka1; 01-25-2014 at 09:25 PM.
    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."

  10. #40
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    I've also read somewhere that about 85% of all adults will seek medical attention for back pain at some point. So, in a sense it is a moot point. However, my point is that those with T-fusions are at a higher risk for lumbar pain at a younger age and/or at higher levels in the lumbar. Now, compare this to not treating the scoliosis at all... the problems will likely come even sooner. So, like I said earlier it's lose, lose. But you are right that it's not anything to get all worked up about. It's just a bad side effect that comes with having scoliosis. If the loading is uneven, there WILL be more wear and tear. period. EVERYONE who lives long enough DOES get DDD.

    I guess my biggest problem is with your doctor's statement of, "one stop shopping." It sounds like they are selling surgery as a quick fix with no adverse side effects. When, in fact, it is a very serious operation and shouldn't be undertaken lightly. Again, not accusing you of having that attitude, either. You didn't say it. The doctor did. It made you feel better in knowing that you made the right choice for your girls.

    I'm sure my DIL's lumbar issues at present are far less than if she had not had surgery. She's one who is better off for having her surgery just as your girls are. It probably saved her life, too.

    So there you have it, Jinseeker. No one is promoting you do anything you aren't comfortable with. There are options for pain management and if you live long enough you WILL get DDD just like the rest of us. Unfortunately, it will probably be sooner than the general population just because you have scoliosis and regardless of whether or not you have surgery. I agree with Pooka1 that a well balanced lumbar will stave it off longer, but at what cost (not talking money)? That's up to each individual to decide.
    Be happy!
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  11. #41
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    Quote Originally Posted by Pooka1 View Post
    Just based on the one-stop shopping for scoliosis surgery comment and that she was back in the general population for back issues. Of course the vast majority of people are driven to a doctor of back pain at some point if they live long enough so that latter statement is practically empty in my opinion. Even if 100% of fused patients later have back pain at some point, it's not the case that they probably would have avoided that had they not had scoliosis and fusion. Rather the figure I saw was ~85% of people will have back pain so back at some point that it drives them to a doctor. That's the point. Maybe they would have been in the ~15% that never gets bad back pain if they didn't have scoliosis and a fusion but the odds are against that.

    And we always have to ask what percentage of people with big curves that aren't fused get driven to doctors for pain. If that's damn near 100% then all of this is a mute point... most people, with scoliosis or without, with treatment for scoliosis or without, will get bad back pain if they live long enough.
    I know that I already commented on this, but do they have a "like" button? Just kidding. Yes, I'm in agreement.
    Be happy!
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  12. #42
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    Quote Originally Posted by rohrer01 View Post
    I guess my biggest problem is with your doctor's statement of, "one stop shopping." It sounds like they are selling surgery as a quick fix with no adverse side effects. When, in fact, it is a very serious operation and shouldn't be undertaken lightly. Again, not accusing you of having that attitude, either. You didn't say it. The doctor did. It made you feel better in knowing that you made the right choice for your girls.
    Well I do not think he says that about all the fusions he does or even most of the fusions he does. My daughter was able to be hyper-corrected with a fusion that ends at L1. That's the magic case perhaps.

    She has no scoliosis anywhere in her spine, in the fused or unfused sections. She was a twisted up pretzel before her surgery. In two months she will be 6 years out. She has occasionally complained of minor pain if she sits or lays in a funny position to which I say "DON'T DO THAT!" She has not taken pain meds to my knowledge for back pain after her recovery though I suggested it. The other kid with the residual lumbar and less well-balanced due to having a false double has occasionally complained about back pain but I doubt it was unlinked to anything she did. I don't think she has taken any pain meds for back pain since her recovery to my knowledge though I have suggested it. She is 4 years and 3 months out.

    He did not say my other daughter was one-stop shopping but I could have inferred that from his reason given for why the first kid was... the fusion stopped at L1. That's what he said when I asked why it was one-stop. That's why I bang on about people not letting their T curves encompass their lumbar. It might mean the difference between one surgery or more than one surgery and eventually losing the lumbar when that could have been avoided.

    In re choices, there is no parent in my shoes who would think they had a choice after seeing my girls. I never at any point felt there was a choice and neither did my husband. The surgeon did not present it as a choice. It's like saying my parents chose to let me have an appendectomy when I had appendicitis. That's not a choice. I think the surgeon would have elevated it to the courts had I refused for either of my girls because they both had the one situation that there is near universal agreement on as to need for fusion... large progressive T curves in adolescents. I had NO choice in the matter. I would have had to allow the surgery even if I KNEW a second surgery was in the offing because whatever two surgeries involved was better than not having fusion. That's how bad it was.
    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."

  13. #43
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    Quote Originally Posted by jrnyc View Post
    hi Jinseeker
    this is an old thread....

    as far as i know, as Linda Racine told me, a patient with a large
    scoliosis curve cannot just have disc replacement...
    i wanted to do that, but she said it makes the spine more unstable
    and cannot be done....one must have fusion at the same time of
    the discs being replaced...
    a surgeon in NYC offered to do mine with partial minimal incisions...
    the back would be fused with regular incision, but the discs would
    be done from side, with minimal incision....another surgeon in CA
    offered minimal incisions for both back and discs...
    but i have not had any surgery as yet.

    best of luck
    jess...and Sparky, the wonder puppy
    That's quite unfortunate to hear? What if the discs that are worn out are not located within the area of the curvature but in the straighter parts of the spine?

    And can discs be replaced right below the fusion, or will those have to be fused as well if they get worn out and damaged?

    This offers little hope for us scoliotics since it may be all too easy now to jump to spinal fusion as we have no choice but to in the event of a disk deterioration, since the curve does increase the wear and tear of the spinal segments a lot faster. Hopefully this new breakthrough in surgical options may shed some hope for all of us pre-op someday.

    http://www.medicalnewstoday.com/articles/263496.php
    Last edited by Jinseeker; 01-26-2014 at 09:57 AM.
    31 yr old male with non-progressive Idiopathic scoliosis

    15-37 degrees- upper thoracic ( w/ left shoulder trap higher, head tilted more to the right)
    45-52 degrees- mid thoracic (to the right, w/ rib hump)
    25-30 degrees- lumbosacral curve (to the left w/ lumbar hump, right pelvis is higher than left)

    currently doing schroth exercises and counter postural techniques("side shifting")
    using rib and lumbar support belts. still contemplative about surgery.

    >>My X-ray<<

  14. #44
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    Quote Originally Posted by Pooka1 View Post
    Well I do not think he says that about all the fusions he does or even most of the fusions he does. My daughter was able to be hyper-corrected with a fusion that ends at L1. That's the magic case perhaps.

    She has no scoliosis anywhere in her spine, in the fused or unfused sections. She was a twisted up pretzel before her surgery. In two months she will be 6 years out. She has occasionally complained of minor pain if she sits or lays in a funny position to which I say "DON'T DO THAT!" She has not taken pain meds to my knowledge for back pain after her recovery though I suggested it. The other kid with the residual lumbar and less well-balanced due to having a false double has occasionally complained about back pain but I doubt it was unlinked to anything she did. I don't think she has taken any pain meds for back pain since her recovery to my knowledge though I have suggested it. She is 4 years and 3 months out.

    He did not say my other daughter was one-stop shopping but I could have inferred that from his reason given for why the first kid was... the fusion stopped at L1. That's what he said when I asked why it was one-stop. That's why I bang on about people not letting their T curves encompass their lumbar. It might mean the difference between one surgery or more than one surgery and eventually losing the lumbar when that could have been avoided.

    In re choices, there is no parent in my shoes who would think they had a choice after seeing my girls. I never at any point felt there was a choice and neither did my husband. The surgeon did not present it as a choice. It's like saying my parents chose to let me have an appendectomy when I had appendicitis. That's not a choice. I think the surgeon would have elevated it to the courts had I refused for either of my girls because they both had the one situation that there is near universal agreement on as to need for fusion... large progressive T curves in adolescents. I had NO choice in the matter. I would have had to allow the surgery even if I KNEW a second surgery was in the offing because whatever two surgeries involved was better than not having fusion. That's how bad it was.
    No, I never felt from your posts that you had a choice in your girls.

    My DIL was given a "choice" to do or not to do the fusion because the Cobb angle was 48o. However, if you had seen her "before" I don't really think there was a real choice, either. She was so twisted that when she was leaning over you could not see her ribcage on the left AT ALL. That would have just been a matter of delaying surgery in her case.

    I know a woman who was born with congenital scoliosis and grew up bent over. Her parents were divorced and she lived with her dad. He absolutely REFUSED to let them operate on her. By the time she reached 18 it was do or DIE. Her mom flew her across country and somehow paid for her surgery (maybe put her on her insurance). The best correction they could get was 60o. She's in her mid-50's now and dying from pulmonary complications due to the scoliosis. Last year they gave her two years to live. I hope they are wrong. She is on oxygen and has nearly died at least three times. Fortunately, her husband found her each time, blue and unconscious.

    For some people this is necessary. The choice to try non-surgical options is for those with more minor or non-life threatening curves.

    My DIL always had problems with her lungs like constant bronchitis. She would have been in trouble had she not had this done when she did. The whole bracing thing upsets her because she was totally compliant and ended up with surgery, anyway. We talked about it and she is of the opinion that maybe the brace held the curve enough so that she didn't progress as fast making the surgery a little easier. At first when I asked her would she still do the brace knowing what she knows now and she said, "yes". Now when I ask her she says, "NO!" I think if the brace did help somewhat it would have been for the purpose just mentioned. If she hadn't been braced and the same were true, she just would have had her surgery a year or two sooner. That's something that I don't think would have mattered to her. The brace emotionally scarred her for life. She has PTSD episodes from it, sometimes quite severe.
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  15. #45
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    Quote Originally Posted by Jinseeker View Post
    That's quite unfortunate to hear? What if the discs that are worn out are not located within the area of the curvature but in the straighter parts of the spine?

    And can discs be replaced right below the fusion, or will those have to be fused as well if they get worn out and damaged?

    This offers little hope for us scoliotics since it may be all too easy now to jump to spinal fusion as we have no choice but to in the event of a disk deterioration, since the curve does increase the wear and tear of the spinal segments a lot faster. Hopefully this new breakthrough in surgical options may shed some hope for all of us pre-op someday.

    http://www.medicalnewstoday.com/articles/263496.php
    Jinseeker,

    I've wondered the same thing as I have been offered an artificial disc or fusion at the L5/S1 level. It was never a serious conversation with my doctors because I rejected the idea right away. For one thing, my DDD was last classified as "mild". For another thing, I was afraid of spinal destabilization. As it turns out, at the level of my DDD my left nerve root is pinched. I also have sacroiliac (SI) dysfunction. I'm assuming that means arthritis in those joints. This also causes the lower back and leg pain. For me its hard for the doctors to sift out which one is causing the bulk of the symptoms. Both shots help (epidural and SI injection). So in my case I don't think a disc replacement or fusion would necessarily help all of my lower back and leg pain. There's just too much at risk for me to "try" a procedure like those offered.

    That was a really interesting article that you found! I don't see what it would matter if you had scoliosis or not for that therapy. The only problem that I can foresee with something like that on a scoliotic spine would be that the discs are wedged on us. It would be harder to keep the cell "juice" right where they would want it because of the uneven pressure on the disc. We'll have to wait and see if this ever gets FDA approved. EVERY disc in my neck is dry and has been since my late 20's. As far as I know the only other bad disc I have is that lowest one. I'd sure rather try that then have a fusion!
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

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