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  • Originally posted by rohrer01 View Post
    This is what Pooka1 keeps saying about getting proper alignment during a thoracic fusion. If it is properly aligned, the non-structural compensatory lumbar curve will reduce or go away. It doesn't happen immediately, so it must be the muscles working to balance the newly straightened spine. After all, it collapsed to try to balance it. That's what compensatory curves do. However, it is my belief that if a compensatory curve is left too long, like over decades as in my case, then they become structural. This, as my logic would see it, would be due to changes in the discs an even perhaps some wedging from bone remodelling because it has been held like that for so long. This would explain to me at least why my curve became a double thoracic. I can no longer bend out my lower curve. When I try, it hurts and I can't breathe properly.
    I know this before entering to this forum for first time.
    Originally posted by flerc View Post
    The daughter of a friend had a bold surgery trying to fix only some thoracic vertebras of her double curve hoping a correction of the lumbar ones.
    I suppose surgeons said him chances were not really good because surely the shape was not exactly the indicated to do that kind of surgery.
    I haven't the knowledge to understand if really is an unconscious body decision activating muscles (dynamic system) or just only a structural matter, leading muscles and ligaments to be less tight after unscrewing a part of the spine (static system)
    But certainly if compensatory curves may be done in adults in the first way, in order to fulfill the three stabilization requirements, probably it's also a dynamic issue.

    Sorry if all this chat was absolutely unesful for you, it was not for me, I'm most convinced now my SSS theory was wrong, It is logical but it seems to be some issues I didn't considered in that chat with Kevin,. even I didn't realize the role of abdominal muscles and I thought that getting a 'muscular brace' has nothing to do in order to get a more straight spine. The fact seems to be that greater (and lower?) the curve greater the importance of such kind of brace.
    As I think I said you time ago, I believe that you need 'relaxing' therapies, 'the closer to total anesthesia you may find'.
    Spain is far from your country too, but there is there a new therapy used for IS based over the discovery that some kind of dystonia is allways present in this kind of scoliosis. It's the first time I heard about a researcher doing something non surgical concrete with his discovery. Probably it would be useful for you too.

    Anyway I think that visiting Schroth practicioners is a good idea. As I know they must to be first physiatrist and they have a great knowledge and knowing Schroth, sure they have to have a great scoliosis understanding. If you read the book, you'll know how much scientist this method is.
    Last edited by flerc; 02-09-2014, 11:48 AM.

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    • Originally posted by rohrer01 View Post
      This is what Pooka1 keeps saying about getting proper alignment during a thoracic fusion. If it is properly aligned, the non-structural compensatory lumbar curve will reduce or go away. It doesn't happen immediately, so it must be the muscles working to balance the newly straightened spine. After all, it collapsed to try to balance it. That's what compensatory curves do. However, it is my belief that if a compensatory curve is left too long, like over decades as in my case, then they become structural. This, as my logic would see it, would be due to changes in the discs an even perhaps some wedging from bone remodelling because it has been held like that for so long. This would explain to me at least why my curve became a double thoracic. I can no longer bend out my lower curve. When I try, it hurts and I can't breathe properly.
      Actually, with the one kid who was hyper-corrected, her lumbar was straight on radiograph on day four post op. Apparently it is some type of balance issue that kicks in to make the lumbar match the thorax which in her case was now <10 degrees (i.e., "straight"). The other kid's lumbar also approximately matched her corrected thorax on day 4 postop also. So I assume this matching of curves is addressed by the body immediately probably on first standing. Maybe it is viewed as an emergency or crisis such that by day 4 the lumbar already comes to match the corrected thoracic curve.

      Now on the second kid with the false double there was a lean that continued to correct and come close to upright over many months and maybe was still correcting after a year. It might still be correcting minutely 4.5 years out now.

      I agree with you about the discs being damaged from being out of alignment in compensatory lumbar curves. That is why the collapse cases occur even under sub-surgical thoracic curves in my opinion. Thoracic curves need to be corrected if only to save the lumbar in some cases it seems.
      Last edited by Pooka1; 02-09-2014, 09:28 AM.
      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."

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      • Tonibunny, I'm sorry to hear about your cancer. It's ever something difficult to give advices but I don't feel to be doing something wrong if I tell you that I have some reasons to believe that not only chemotherapy and rays therapies directed only to cancer cells seems to be good but also some not well known scientist products, at least in order to reduce pain. If you want I may say you via PM about 2 of them that I really know.

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        • Originally posted by rohrer01 View Post
          This, as my logic would see it, would be due to changes in the discs an even perhaps some wedging from bone remodelling because it has been held like that for so long.
          As I believe I understand, VH' law only apply until end of growth and Wolf's law would be saying that concave side should to turn harder and more resistant, but I cannot know it.. anything may be possible according to my understanding/knowledge. http://www.scoliosis.org/forum/showt...one+remodeling

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          • Originally posted by flerc View Post
            I believe I said you there is a surgery for dystonia and seems to works. I hope you may find the best for your case!
            At least here in the U.S.A. there is no surgery for dystonia. I asked my doctor last month if there were ANYTHING else they could do for me, as I was in tears and sobbing from the pain of my last treatment. He said he wished there were but there is not. If there were a surgical fix, HE would know about it. This awful disease affects many muscle groups and seems to be spreading to a larger and larger area around my shoulder girdle, neck and head, even including my upper back. Unless there were some kind of brain or spinal cord surgery, I don't know how they could address something like that surgically.

            I would be interested to know what this surgery is and what the outcome is. I don't have the huge involuntary head movements that some people with cervical dystonia have. My tics are small and go unnoticed by everyone but me.
            Be happy!
            We don't know what tomorrow brings,
            but we are alive today!

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            • I'll look for it in my 'distributed file system'. Unfortunatelly I lost a disk around 2 years ago, I don't remember when I saw this news. 'll let you know.

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              • Flerc,
                Even if this exchange of information didn't help me, it was worth talking about if it helped you or anyone else understand some aspect of scoliosis. I'm not against Schroth exercises. I've never tried them. I just know that MY curve is untouchable due to its location.

                The exercise ball is quite relaxing. I have one. I also have a treadmill, hand weights, a smaller ball for my shoulder rehab, stretchy bands, and a type of ski machine that builds up the lower back (it's not really a ski machine but I don't know what it's called and it mimics that motion). I also have a Wii Fit Plus game that has many good things on it. Unfortunately, lately my tachycardia has been acting up so I can't do too much exercise, just gentle things that keep my heart rate down.

                Oh, and physiatrists are medical doctors. Schroth has physical therapists.
                Be happy!
                We don't know what tomorrow brings,
                but we are alive today!

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                • Googling is more simple.. http://www.medtronic.es/su-salud/dis...iste/index.htm

                  Using google translator it should to be clear for you, if not, tell me and I will translate what you may not understand.

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                  • This is deep brain stimulation. It is used to stop tremors in dystonia and Parkinson's patients. I don't have the tremor. Thank you, though! =)
                    Be happy!
                    We don't know what tomorrow brings,
                    but we are alive today!

                    Comment


                    • Originally posted by rohrer01 View Post
                      Flerc,
                      Even if this exchange of information didn't help me, it was worth talking about if it helped you or anyone else understand some aspect of scoliosis. I'm not against Schroth exercises. I've never tried them. I just know that MY curve is untouchable due to its location.

                      The exercise ball is quite relaxing. I have one. I also have a treadmill, hand weights, a smaller ball for my shoulder rehab, stretchy bands, and a type of ski machine that builds up the lower back (it's not really a ski machine but I don't know what it's called and it mimics that motion). I also have a Wii Fit Plus game that has many good things on it. Unfortunately, lately my tachycardia has been acting up so I can't do too much exercise, just gentle things that keep my heart rate down.

                      Oh, and physiatrists are medical doctors. Schroth has physical therapists.
                      You may be sure it was very much useful for me. My situation is absurdly complicated so believe me I need that kind of 'shoves' to take decisions and today I decided to by a ball, I said it to my wife and she knows that once I REALLY take a decision she cannot do nothing to come it back.
                      Also it could be useful for others. I use to read about people saying me that something they read about some posts mine was useful for them.. who knows if it could not happens the same in this case.
                      If I were in your shoes I would try to practice a relaxing/postural therapy as some I mentioned before.. I don't know if Antigymnastique is in your country, probably only in some states.
                      I supposed physical therapists and physiatrists were the same in your country. This is exactly the name used in Spain for physiatrists. In my country there not exists as I know something as physical therapists, only physiatrist .. probably gym teachers are the same.. Some methods in my country only are teached to physiatrists, as the learned by the physiatrist treating my daughter. They are not called 'medical doctors', even they study the same matters in the same Medicine University as Anatomy, Biomechanics..

                      It's good to chat with you, these are the kind of chat I want to have here!

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                      • Originally posted by rohrer01 View Post
                        This is deep brain stimulation. It is used to stop tremors in dystonia and Parkinson's patients. I don't have the tremor. Thank you, though! =)
                        mm.. I understand, anyway I'll look for the Spain treatment, probably it could be also useful for you.

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                        • Thanks, Rohrer, for your kind wishes. I tried Botox before but had little success compared to the trigger-point injections, so I returned to having those. I've also had dry-needling and acupuncture which give relief for a very short while but then everything tightens up again. I'm resigned to the fact that my spine is out of balance and poking out in odd ways and there's not a lot I can do to work against what is basically my natural state.

                          I take Baclofen, but alternate it with Diazepam monthly so I don't build up a tolerance to either drug. They do help somewhat.

                          Swimming makes my back feel great, it's a shame I'm not a rich person with a pool (few people have their own pools here in the tiny, crowded UK!) *smile*

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                          • Originally posted by tonibunny View Post
                            Thanks, Rohrer, for your kind wishes. I tried Botox before but had little success compared to the trigger-point injections, so I returned to having those. I've also had dry-needling and acupuncture which give relief for a very short while but then everything tightens up again. I'm resigned to the fact that my spine is out of balance and poking out in odd ways and there's not a lot I can do to work against what is basically my natural state.

                            I take Baclofen, but alternate it with Diazepam monthly so I don't build up a tolerance to either drug. They do help somewhat.

                            Swimming makes my back feel great, it's a shame I'm not a rich person with a pool (few people have their own pools here in the tiny, crowded UK!) *smile*
                            When I did research on baclofen I found it to be a drug that your body doesn't build a tolerance to. You will get used to the side effect of drowsiness, but it doesn't lose its efficacy of relaxing the muscles. Have you tried clonazepam (Klonopin) instead of diazepam (Valium)? They are the ONLY two of the benzodiazepines that have muscle relaxing properties. However, clonazepam has less drowsy and more relaxing and is a longer acting drug (I believe I read 12hr vs. 8hr). I've tried both and the clonazepam wins hands down. I asked my doctor about tolerance and resistance to this drug on Friday because my spasms are worsening and I wanted to increase it. He said that with this drug also, by about the third titration up keeps its efficacy without having to do anymore increases. Now this doesn't mean that if the disease process deteriorates, as in my case, you won't ever need an increase in either drug. I use them together. I haven't had an increase in either drug for at least two years. My disease process is getting worse. It's not a drug tolerance issue. I know because I have new and worsening symptoms. It might be worth asking.

                            I don't know anyone that's not super rich that has a nice warm swimming pool in their house (meaning I don't know anyone). It would be nice AND therapeutic. They do have these things that they sell now that are just big enough for your body to move freely in. They create a current so you can swim without needing a huge pool. I don't know how much they cost, but if they aren't much more than a jacuzzi, it might be worth looking in to.

                            I've never visited the UK, but often wondered how it has existed for so long without overpopulation. If I'm being stupid I'm going to delete this question, but isn't it an island nation like Japan? I've wondered the same thing about Japan...??? Do people have houses with yards or do you mostly live in apartments (flats)?
                            Be happy!
                            We don't know what tomorrow brings,
                            but we are alive today!

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                            • Here in London it is almost all flats/apartments unless you are a multi-millionaire, especially where I live. I live right in the middle of London, so central that it takes just 10 minutes to walk to the City (the main financial district) and 15 minutes door to door to the main shopping area, Oxford Street. I'm very fortunate to live so central (I bought my flat 14 years ago when I was a new graduate and my area was really run-down, but now it is dead trendy!) but I have no garden or outside space. There's a lovely park at the end of my road with a boating lake and ornamental gardens and stuff but it's not the same as having your own garden. We're currently redecorating the flat so we can sell it and move outside London though, as we can afford a nice sized house for the price of the flat *crosses fingers*. Outside of The cities most people live in houses with gardens. I also share a house up in the English Midlands near the border with Wales, where I go when I need some peace and quiet, and so I can go walking in the Welsh hills - but even though that is a relatively big house (4 bedrooms) there wouldn't be room for one of those small swimming pools (I know the ones you are referring to). I think houses here are probably a lot smaller than those you get in the US - I'm always in awe of the space and huge houses that appear in US films.

                              Going back to Baclofen, I didn't realise that you don't build a tolerance to the stuff! I'm just following my GP's advice. I like having the diazepam every other month though because, rightly or wrongly, it is nice to save it for if I need to relax a bit! I'm careful with my drugs and never take more than I should, and I'm not generally a big stress-head, but having to constantly deal with Stage IV cancer does occasionally get to me. I was really young to get it (34 at diagnosis). As it happens I had some good news today, that my last scan showed that everything is "stable" so I will get another month's break from chemo *massive smiley face*

                              I've never heard of Clonazepam, but will ask my GP about it, thanks!

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                              • Oh, I do so hope you go into remission! I can't imagine dealing with everything that you are dealing with. My doctor here that specializes in Cervical Dystonia and does treatments using EMG/trigger point/Botox/etc. said he is going to prescribe me diazepam on top of the clonazepam if my pain is bad the month before I come in for my next Botox. My Botox injections were so painful the last time that it literally reduced me to tears. I can take a LOT. But that was just unbelievable! Like I said in several other threads, my muscles are just clamping down with such force that they actually cut off the blood supply to my left arm. He does NOT want that happening again. I used to be more concerned with drug addiction than I am now. Life is too short to spend it in absolute pain every day. I'm grateful that I have my meds. I don't abuse them. My doctor would rather see me take an extra pill than end up in the ER, though. I always tell him what I do if I even stray a little bit.

                                I hope you have a GREAT month! Enjoy your time off chemo. Spend some time at that park you just described or go out in the countryside and enjoy some fresh air. Although, the weather is probably pretty cold and snowy right now. Am I correct? It's below zero here every day. I can still find ways to enjoy my "good" days and I'm sure you will, too. Just being off chemo will make you feel better, I'm sure. I wish you the best! It sounds like such positive news. =)
                                Be happy!
                                We don't know what tomorrow brings,
                                but we are alive today!

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