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Thread: Dr. Hey has seen "countless cases" of progression in "stable" scoliosis

  1. #16
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    Quote Originally Posted by Pooka1 View Post

    I guess we can't assume we are all talking about IS and have to specify it every time.
    We know each others cases here, itís the newbies that need to understand this and the difference between particular cases. Apples and Oranges just doesnít cover it! More fruit needs to be added to the basket!

    Standard cases or common cases of IS have a certain element of risk. Add other factors and that risk multiplies. All it takes is for one thing to go wrong for the tears to flow.....

    There have been quite a few revision threads and posts here lately which is disturbing to hear. Even though many of us come out fine, itís the failed surgeries that really emit a LOUD sound, and surgeons or at least good surgeons hate to hear. We hate to hear.

    I have had quite a few doctors and surgeons shake their heads no through the years. If one encounters this reaction, there is no reason to lose hope, I didnít, but I always knew that I would have my day and that the surgeon had to be well trained. We talked about complications. Many complications. But in the end, I was told that it would be a benefit over my current situation at that time which was pretty bad. Alarming levels of constant pain equivalent to line voltage are good reasons for surgery. And I still had to beg.

    Surgical intervention needs good reasons....really good reasons. Timing and risk are common denominators. Each very specific on each case.

    Curve progression rates are just one problem. After age 40, degeneration becomes a big factor.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  2. #17
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    Rohrer, I believe you cannot be so sure about something so complex, where knowledge about it is so little that simple and basic questions cannot be answer by no one.
    What if you would have had surgery when you were a teen and now you would be in pain? What if that pain would the consequence of surgery? What could you do? Would you be so sure about all what you say?

    Quote Originally Posted by rohrer01 View Post
    If they are having pain as teenagers, you can be sure that they will be in very sore straights as they get older. Why not fuse them young and give them a chance to live a relatively pain free life?
    Why are you so sure? I have heard that an extreme stiff spine may provoke pain. What if the right method to get a flexible spine is done? What if it is the outcome of some strange disease? I know cases when some of those diseases were discovered after surgery. Not always is so clear when is idiopathic and when not.
    We would agree in all what you say if it could be known that chances to avoid surgery is 0 or fusion would be a definitive solution and would not be dangerous and so extremely invasive and irreversible (at least since nobody think in reverse it), but of course is not the case.

  3. #18
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    Quote Originally Posted by flerc View Post
    Rohrer, I believe you cannot be so sure about something so complex, where knowledge about it is so little that simple and basic questions cannot be answer by no one.
    What if you would have had surgery when you were a teen and now you would be in pain? What if that pain would the consequence of surgery? What could you do? Would you be so sure about all what you say?



    Why are you so sure? I have heard that an extreme stiff spine may provoke pain. What if the right method to get a flexible spine is done? What if it is the outcome of some strange disease? I know cases when some of those diseases were discovered after surgery. Not always is so clear when is idiopathic and when not.
    We would agree in all what you say if it could be known that chances to avoid surgery is 0 or fusion would be a definitive solution and would not be dangerous and so extremely invasive and irreversible (at least since nobody think in reverse it), but of course is not the case.
    You forgot the "If they are in pain as teenagers" part. I have battled with pain my whole life. I wouldn't wish it on my worst enemy. I don't know what it's like to NOT have back pain. Granted, there were times in my life when the pain was minimal. Now that I'm middle aged, I have to take pills round the clock to maintain my active lifestyle. I'm one of the lucky ones, though. At least meds keep the pain at bay enough that I can still be active, not pain free, but active. What is the trade off here? Is the constant flow of tylenol, oxycodone, baclofen, and klonopin into my body better for me in the long run than a one time surgery (or more if revision is needed)? How do you know that my liver isn't going to fail? Before the drugs I'm on now it was a constant flow of NSAIDS every day from the time I was a teenager until my stomach couldn't hack it anymore. According to my last kidney test, I'm in stage 2 kidney disease.

    I realize you are afraid of surgery and making a permanent mistake. To be honest, so am I. I haven't aggressively pursued surgery for myself for that very reason. Once it's done, it's done. But, if it could have saved me a life of pain and drugs I would have had it done in a heartbeat. I don't have that option anymore. My age, the location of my curve and other factors have made any surgical outcome a scary prospect for me. At 16, it would have been a whole different story. I wasn't given the choice. There is NO CURE for scoliosis. EVERY treatment has its drawbacks and unwanted side effects. So, doing nothing also has its consequences and bad side effects, too.
    Last edited by rohrer01; 09-09-2012 at 09:55 PM.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  4. #19
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    Quote Originally Posted by titaniumed View Post
    We know each others cases here, itís the newbies that need to understand this and the difference between particular cases. Apples and Oranges just doesnít cover it! More fruit needs to be added to the basket!

    Standard cases or common cases of IS have a certain element of risk. Add other factors and that risk multiplies. All it takes is for one thing to go wrong for the tears to flow.....

    There have been quite a few revision threads and posts here lately which is disturbing to hear. Even though many of us come out fine, itís the failed surgeries that really emit a LOUD sound, and surgeons or at least good surgeons hate to hear. We hate to hear.

    I have had quite a few doctors and surgeons shake their heads no through the years. If one encounters this reaction, there is no reason to lose hope, I didnít, but I always knew that I would have my day and that the surgeon had to be well trained. We talked about complications. Many complications. But in the end, I was told that it would be a benefit over my current situation at that time which was pretty bad. Alarming levels of constant pain equivalent to line voltage are good reasons for surgery. And I still had to beg.

    Surgical intervention needs good reasons....really good reasons. Timing and risk are common denominators. Each very specific on each case.

    Curve progression rates are just one problem. After age 40, degeneration becomes a big factor.

    Ed
    Very well said. Let's hope you stay out of the revision category, too. This is one disease that scares the daylights out of me because of all of the weird symptoms and the horrendous "cure" which is no cure. But to people like you, gives quality of life back.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  5. #20
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    Rohrer I didn’t forget that part, but I not agree that all teens in pain should to have surgery. Surely the chance to avoid it would be lesser, but we cannot a priori say that could not be any other option in ALL of those cases. Maybe I’m wrong, I cannot be sure of that. Anyway I think that nobody has the enough knowledge to does such kind of categorical claims.
    Of course I’m afraid of surgery, but I’m not saying to not do nothing (one of the possible options) or claiming about a particular decision as the best in a general case.

    I agree that if you may have again 16, you should to try with surgery, at least after a not long time proving without any change, with something you have never proved before.
    But it has not sense to think in the past. You could not see the future and know what would happen then and is logic to be afraid about surgery and not totally clear which could be the right decision.
    Anyway, you must to think only in the present and future and of course, you need to stop with pain and reduce the amount of meds. Are you sure that now surgery should be discard as a good option?. What if you get significant improvements in some issues?. It would be impossible to fix only few of the vertebras involved in the curves in your case?

    Anyway I believe that probably you are needing the best detox method and to know if something else is provoking your pain. Something as other affection, a nutritional deficit, a genetic or hormonal problem, that even if it could not be reversed, maybe been compensated in some way.. who knows? Even if scoliosis would be the cause of your pain as seems to be, probably it is increased by other factors that may be controlled in some way.

    Sorry if it has not sense what I’m saying.. I wish to help you and certainly I believe you should to be ‘disconnected’ for a while. Something as a long vacation, without working or performing any kind of activity not related to solving your problem. I don’t know if there are such kind of centers where you may do something like that.. something as a sleep cure, thermal waters..the best massages, the best diet, right studies, the best rehabilitation therapies, the best detox methods, right exercises.. I would not be so sure that your spine could not be less stiff. What may happen if you get some flexibility and without the effect of gravity force, you remains for a time with your curve reduced?. Would be impossible something like that?

    Well, I believe that something must to exists to solve your problem and probably the right professional/s are not so far. I really hope you may find them.
    Last edited by flerc; 09-10-2012 at 11:11 AM.

  6. #21
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    Flerc,
    I'm okay. Detox probably wouldn't do me any good. I NEED these meds to keep my muscles nerves calmed down. I DO have another problem that may or may not be related to the scoliosis. It's muscle dystonia. I asked the doc if it is related and he said no one knows for sure. I asked if it was the same as fibromyalgia and he said, "No." People with fibromyalgia have pain of unknown origin. When nerve conduction studies are done in them, the painful muscles are "silent". People with dystonia have "noisy" muscles, meaning there is a lot of activity going on. This is probably the source of most of my pain. There are people that have both scoliosis and dystonia. There are people with just one or the other. That's why they don't know if they are related.

    When my spine regained flexibility through chiropractic, it began to collapse. Thus a case of "progression in stable scoliosis". Anyway, this is getting off topic. I don't want to hijack Pooka1's thread.

    Take Care.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  7. #22
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    Quote Originally Posted by rohrer01 View Post
    Anyway, this is getting off topic. I don't want to hijack Pooka1's thread.
    No I have no problem with topic drift. People should talk about whatever is of interest to them. Anyone who complains about legitimate topic drift (as opposed to not wanting to address the issue and throwing up subterfuge) is concerned about form over substance and not to be taken seriously. This is a medical group to help people get information.
    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."

  8. #23
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    Thanks, Sharon. =)
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  9. #24
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    Quote Originally Posted by rohrer01 View Post
    Flerc,
    I'm okay. Detox probably wouldn't do me any good. I NEED these meds to keep my muscles nerves calmed down. I DO have another problem that may or may not be related to the scoliosis. It's muscle dystonia. I asked the doc if it is related and he said no one knows for sure. I asked if it was the same as fibromyalgia and he said, "No." People with fibromyalgia have pain of unknown origin. When nerve conduction studies are done in them, the painful muscles are "silent". People with dystonia have "noisy" muscles, meaning there is a lot of activity going on. This is probably the source of most of my pain. There are people that have both scoliosis and dystonia. There are people with just one or the other. That's why they don't know if they are related.
    Of course pain should to be avoided. Also it seems to be a vicious cycle between pain and bad posture to avoid the pain, leading to increase the curve. I hope you may find something better than meds, but in the meantime, you should try to avoid their bad effects. I have heard about some methods to detoxify even the liver. Some of them (I'm almost sure) consist in natural foods as some kind of algaes.

    Is reasonable to think, as many people believe, that stiffness is the cause of progression during growth. Someone believe is provoked by muscles, others by ligaments, other by spinal medullar.. I don’t imagine how chiropractors make a spine flexible (I think they are only focused on bones) , but I have heard that many times before, so surely they can.

    After growth, only some kind of force (as gravity force) can provoke progression and it not seems reasonable to believe that stiffness may provoke progression.. not in a direct way, but may lead to pain, which in turn may lead to bad posture (an inner force). Anyway stiffness may be sometimes the only one ‘good force’ counteracting the bad forces. Then flexibility may leave the bad forces without resistance, but of course, only those bad forces are the cause, not the flexibility.

    Probably in your case, pain or high tone because dystonia might be those bad forces. Some Spain Drs said that IS is provoked by a ‘soft’ kind of dystonia.. it has sense, who knows. I hope you can find a cure to it.
    Last edited by flerc; 09-15-2012 at 01:02 AM.

  10. #25
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    After Chiropractic my spine curves severely. I add that everyone is terrified of surgery but, in 1956, my spine hurt, I was very deformed and scoliosis surgery was not as advanced as now. I needed to stay in plaster casts until the fusion healed. We are talking 56 years ago!!!!
    I actually welcomed surgery and would do anything to look better. That surgery gave me 46 years of normal life before I needed my(successful) revision AT AGE 60.
    I am 70 AND STILL PAIN FREE.
    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

  11. #26
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    Quote Originally Posted by Karen Ocker View Post
    After Chiropractic my spine curves severely. I add that everyone is terrified of surgery but, in 1956, my spine hurt, I was very deformed and scoliosis surgery was not as advanced as now. I needed to stay in plaster casts until the fusion healed. We are talking 56 years ago!!!!
    I actually welcomed surgery and would do anything to look better. That surgery gave me 46 years of normal life before I needed my(successful) revision AT AGE 60.
    I am 70 AND STILL PAIN FREE.
    Some chiros would sit there and deny you exist. There is breath-taking ignorance in that camp and so many others.
    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."

  12. #27
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    Quote Originally Posted by Karen Ocker View Post
    We are talking 56 years ago!!!!
    And fusion continues being what ever was..

  13. #28
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    Quote Originally Posted by flerc View Post
    I donít imagine how chiropractors make a spine flexible (I think they are only focused on bones) , but I have heard that many times before, so surely they can.
    Rohrer, do you remember if your chiropractor did something with your ribs?

  14. #29
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    Quote Originally Posted by rohrer01 View Post
    I NEED these meds to keep my muscles nerves calmed down. I DO have another problem that may or may not be related to the scoliosis. It's muscle dystonia.
    Did you heard about Neural Therapy? Is used to reduce pain and cervical dystonia. It seems to work on the neurovegetative system.

  15. #30
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    i know i had scoli earlier than i first thought....
    officially it was diagnosed at age 31, but i think i remember
    a doctor mentioning something to me when i was 18....
    and...ballet became harder and harder for me before i was
    even a teen....i think partly due to imbalance of my body....from scoli...
    yet...i doubt i was congenital....
    who knows...
    i do know that, a couple of years ago, Dr Lonner thought
    my curves were "relatively stable" but thought my discs
    were getting worse...
    an X ray i had January 2012 showed my lumbar curve increased
    since he said that (in April 2010)...by 9 degrees...

    i have an appointment to see Lonner again end of October....
    want to see if he reads my lumbar curve as 70 degrees, as the
    doctor who ordered X ray does...

    regardless...i am NOT surprised in any way that my scoli progressed...
    and i do NOT believe the statistics...i bet there are more who
    progress who aren't "supposed to" than research hears about

    jess

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