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Thread: Crazy New treatment?

  1. #1
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    Crazy New treatment?

    Hello all,
    I have not been on the forum for a long time. Unfortunately I must admit much of the reason i have not been around is that some individuals on the forum seem to have alot of time to express their views where they are not required or desired. It seems almost a hobby for them more than an actual pursuit of helpful information or support for others. Some insightful thoughts and insights end up getting run around in circles and go way off track in a battle of egos. That is not to say everyone on the forum is this way. In fact I think it is limited to a small few. I have seen others on the forum saying the same thing. Anyways I didnt come here to bash, I just think it is unfortunate. Maybe we can find a way to fix that?

    Any way the reason I wanted to jump back in was because I have a theory/questions I want to throw out there regarding a potential treatment idea I have. I am a male, now 38 yrs old and have had significant pain for about 9 years from relatively small curves. About 30ish degrees last count. Ive been through the gammot of treatment protocols including clear and spinecore, chiro, massage, acupuncture and a pile of other psuedo scientific bologna. Unfortunately with no success. Been told by a number of doctors that it would not progress. They were incorrect. I am on track with the stats for adult progression at about a degree a year. I have devised a number of my own treatments and little back fix inventions without any lasting success. I have noticed one thing interesting though. I have been messing with my latest little torchure device and getting intermittent positive results. All it is, is about a two inch long peice of dowel erected vertically on a peice of plywood that I lay on (on my back) for about ten minutes at a time. Basically the dowel pokes the offending muscle on the convexity of my lumbar curve. The one that is overdeveloped. I also get my 6 yr old to whack the muscle with a wooden mallet a bunch of times,(Not odd at all I know). Sometimes it will coax that muscle into calming down and subsequently gives me relief from the pain I always get in the middle of my spine....for a little while. Anyways it got me thinking. We really don't have any non surgical treatment modalities that seem to give any real, consistent relief or alter the course of the curve. I sort of wonder if it is because our theories were heading in the wrong direction and we develop protocols to support our invalid theory. Hence, no real results.
    Here is my theory of the week. My problem all started with this muscle on the convex side of my lumbar curve. That muscle became cramped or overworked and always tight to the point of constant agrivation. I tried everything and couldn't stop it. Eventually my back issues started compounding from that initial problem to the point I am today, quite a mess.
    Now I always sort of thought that that initial muscle problem was a result of my curvature. The muscle was and always is working to stabilize my crooked spine. Now I wonder if it was the opposite. A muscle problem...... that eventually contorted my spine. Now, because of the degree of curvature the muscle is in fact supporting my crooked spine and is always working overtime. Anyways here is my potentially dangerous treatment protocol if this has not already been tried. What if you used something like botox injections to shut that muscle group off for extended periods of time. Scary i know. Maybe the dynamics of the spine would change? Unravel if you will? Anyways I could write a book so I will leave it at that.
    Throw out your thoughts, especially if you are an adult with pain and are maybe willing to try my crazy wooden mallet and dowel trick to see if you get any relief. All the best, Bish

  2. #2
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    hi Bish
    i get botox shots every 3-4 months to freeze the muscles in my upper back, mostly on the left side...that is the side i have the worst muscle spasms...or i used to...until the botox shots...
    i don't know about freezing muscles for the reasons you are talking about...and personally, it doesnt sound to me as if what you are talking about would do any good...
    i do know that my shots are covered by insurance, because they are medically needed, not cosmetic....botox shots are covered for certain established...no longer considered "experimental"...procedures...like for migraines, muscle spasms...some other stuff i've forgotten....
    the surgeons i consulted with...several...all agreed that my fusion could be shortened from the needed T4-pelvis, to T11-pelvis instead, due to relief i get from the botox shots! so the results i get are considered pretty successful....and i am grateful for any/all pain relief i can find! (i haven't had the surgery...yet)
    i have had lots of other injections...for lumbar pain...but none have really helped much...
    the botox shots are the only injections that have given me relief from pain....

    i have never hoped any injections would alter anything...just hoped i might get pain relief...
    i have curves of T42, L61, with bad degenerative disc disease, stenosis, hypokyphosis, listhesis, and some other stuff i can't remember...or probably don't want to...
    i think it is...a little...naive..to think anything will alter the course of the curves..will alter the progression...
    i guess those who use bracing are hoping to stop the curves...
    reversing it (in an adult no longer growing)...well, it is just my opinion...but i think that is an unrealistic expectation...
    of course, everyone can dream...should dream......
    but my personal thought on the subject...not scientific, not medical, just a patient's opinion...is...it ain't gonna happen...

    jess
    Last edited by jrnyc; 01-31-2011 at 11:48 PM.

  3. #3
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    Hey Jess

    Thanx for the response. So you get botox for muscle spasms directly into the muscle not the spine correct? These last 3 to 4 months? Thats pretty good. I may have to try that. Are you aware of any long term effects from botox injections? Not that it matters that much. I am feeling the long term effects from chronic pain and it sucks. Is that a physiatrist or pain doc or who does this? I didn't completely undertand how the pain relief would change the length of the fusion you would have to get? How big are your curves? Thanx, Bish

  4. #4
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    Hey again Jess. Sorry I missed your edit to your post. I can assure you I do not have my head inserted in my arse and live under some "naive" belief that my little theory is going to save the world or FIX my curve.This was just a thought for discussion and so far is as plausible as any other treatment protocol that has no effect. Haha! I can only hope some other Naive thinker will one day actually come up with something that works. Ultimately though my gut tells me the problem lies in the brain. We can do lots of crazy little treatments externally but it won't change the incorrect messages that the brain is sending the body. Unfortunately we are a long way from being able to correct those messages. The systems involved are beyond our comprehension so far. Bish

  5. #5
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    Hi Bish,

    I don't have any experience with Botox, but I think anything that can disrupt the usual patterns of holding could be a good thing. But since we're hypothesizing here, I'll add this.. if a doctor is willing to do this for you, I can't imagine they would think it would have any more effect than temporary pain relief. Because if it could actually permanently relax the muscles, and you didn't do anything to strengthen the opposite side, which I assume has gotten weak from years of relying on the other side, wouldn't that just cause the curve to collapse in on itself even more? Or maybe I am imagining your curve wrong?...

    P.S. I completely understand why you have been off the forum, it can be surprisingly unsupportive around here. But I think the main reason is this -- some people feel the need to inform and protect parents of kids, who presumably have a limited window for treatment. For them it may be best to stick to what passes for tried and true, I don't know. But as adults, the rules change completely, even though we still have those same voices of the protectors in our ear. The medical world has already given up on us, and we are left to experiment on our own bodies. But we keep going because what other choice do we have? Hope is so important to health and happiness.

    Please stick around. There is strength in numbers.
    1993, Age 13, 53* Right T Curve w/ Left L compensatory
    2010, Age 30, 63* or 68* (depending on the doc) Right T Curve w/ Left L compensatory

    http://livingtwisted.wordpress.com/

  6. #6
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    hi Bish
    the pain relief would change the length of fusion required because it means i am not having a lot of pain in thoracic area anymore...since the worst pain is lumbar for me, and since the surgeons want to keep the fusion as small as possible while as effective as possible, they felt the fusion could be done starting at T11 rather than T4 since the pain was being addressed with the botox shots...my worst curve is lumbar...so they could ignore some of the thoracic curve, as it is not the big problem...
    hope i explained that...sounds wordy to me, but i hope you got what i am trying to say...

    thought i mentioned in my post...my curves are now thoracic 42, lumbar 61, but the degenerative disc disease seems to be adding to my pain significantly...also spinal stenosis, spinal arthritis, listhesis, hypokyphosis, etc, etc...
    my scoli was manageable for pain until i herniated discs, and then it was downhill all the way...that was when the pain got really bad..though the usual tx was given (steroids, weaned down over 10 days,etc), my spine has worsened since those discs blew...and i live with severe pain that contributed to my early retiring before i really wanted to...

    i get the botox shots from a pain management doctor in Manhattan...i have discovered that there are some pain docs who "don't believe" in using botox...when i heard that from one of them, i thought "what a stupid thing to say to a patient who is living proof that it works!" and yes, the shots go into the muscles, to freeze them...

    i don't know about the brain causing the spine to curve...?...
    personally, my spine is causing my spine to curve...
    my brain knows EXACTLY where my spine should be, how straight it should be, and would love to make it straight!
    ahhhhh..the limits of the human brain!

    jess
    Last edited by jrnyc; 02-01-2011 at 05:06 AM.

  7. #7
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    Hello, Bish.

    The reason for me commenting is so that you can have another MD's perspective on the botox injections and so you know who to go to so you can get them IF they are willing to give them to you. Also to maybe give you some "new" ideas on things you might try.

    One of my pain docs (anesthesiologist) wanted to do an intrathecal catheter - morphine pump - to help with my pain (46 and 38 deg from T-1 to L-2). I wasn't too keen on that idea since I've never heard of anyone having that for scoli pain and it carries some pretty dangerous risks. I also see another doctor in physical medicine - a physiatrist - and asked about the botox injections. He said that he certainly does give them, but not in my case. I even told him about jrnyc's success with them. His concern, at least in my case, was that paralyzing the muscles around the spine would make it collapse faster. Now, I don't know if this would be true for everyone, or just those of us with progressive curves.

    Like you and many other people on here, I'm willing to try just about anything to alleviate the pain and am sick and tired of being on meds. I would probably still try it (botox) if he would be agreeable to it. I think for many of us, the pain factor is far more important to us the the degree of our curves, aside from those with heart and lung issues, of course.

    I did have some trigger point injections with steroid today (by the physiatrist). I felt really good after the injections because the lidocaine numbed up the painful spots. Now that it's wearing off I'm sore. I'll have to wait and see what the final results are. I was also given a topical concoction made up by a doc in my pain clinic. My doctor said it has proven to be very successful in people with chronic muscle pain. It consists of four medications (lidocaine, ketoprofen, amitriptyline, and gabapentin) in a creamy base. It supposedly soaks right into the muscle and doesn't cause the bad side effects that taking the meds orally does. The pharmacist said it eventually "retrains" the nerve receptors not to fire off pain signals so intensely so can be discontinued after about a year. He also said that if it's going to work that it will work after about three days use. I'll keep everyone updated on this if you all want. I've also had an epidural injection for DDD at L5 - S1 and it worked like a miracle. I'm scheduled for another one next week. It lasted about 9 months (about 6 before I noticed it was wearing off to a significant degree) between injections. I'm not nearly as bad (in the lumbar spine) at this point, though, as I was when I got my first injection.

    I think desperation will make many of us try "crazy" things (only crazy to those not living in constant misery). My last scheme costed me a total of 16 degrees in the WRONG direction and turned a single left thoracic curve into a double major curve. So, be careful.


    Best wishes to you. I hope you can find something that helps.
    Last edited by rohrer01; 02-07-2011 at 10:43 PM. Reason: wrong drug ingredient

  8. #8
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    i had trigger point injections for years...did nothing for me...

    i also have had epidural injections, facet block, nerve ablation, sacroiliac joint injections (that worked the best...pain free for 3 blissful weeks)...
    the most relief i have ever had with any injections is 3 weeks! (except with the botox)
    the epidural injections i've had were a big disappointment to me...i had 3...one at Columbia Pres Hospital, 2 in doctor's offices...
    one doc was an anesthesiologist, one a neurologist/pain doc...
    one scoli specialist said he suspected i didn't get relief from the epidural shots because they work better for nerve stuff, and not for structural stuff...i also had them before my left side sciatica got so much worse, which started last year...

    the surgeons i consulted with...including Boachie, Neuwirth, Lonner, Anand (CA), and a few others, all were fine with the botox shots...the shots i get are in a small area of thoracic....
    my thoracic area is the smallest curve...currently 42 degrees...and causes the least of my pain, though the muscle spasms were painful, tight, and made it feel like there was a monkey on my back...it was starting to have an impact on my breathing...
    their decision to change the fusion to T11to pelvis, down from T4 to pelvis, was agreed with by every other surgeon i saw...the point being that the shorter the fusion that would be effective, the better...my worst curve and worst pain and worst discs are all in lumbar area...thus the need for pelvic fixation...
    my curves haven't changed much in the last 3 years...but my discs have gotten worse, same for listhesis, stenosis, spinal arthritis...hypokyphosis is fairly severe...
    to me, the worsening discs are causing much of the increase in pain in the last few years....

    i am glad for anyone who gets any pain relief with their spinal problems...thru any medical means necessary and reasonable...

    it is needing a long fusion that has me kinda stopped in my tracks, even though i now can have minimally invasive lumbar fusion....

    jess
    Last edited by jrnyc; 02-01-2011 at 04:30 PM.

  9. #9
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    device?

    It sorta sounds like your making something like this?? http://www.amazon.com/Lumbar-Extende...617132&sr=8-10 (I've not tried it but have looked at a lot of them.)

    I was interested to read about the muscle problems you have. I believe my spine problems are caused by muscle problems/tightness.. Have you looked at this book. The author talks alot about nutrition and muscles http://www.amazon.com/Health-Your-Ha...0&sr=1-1-spell For me, it seems my joints are a little too flexible and my muscles have a tendency to be too tight. I walked around with hip pain for years until I found the I*** (can't spell it) band stretch on the the internet.

    I have designed my own stretching while strengthening routine which I believe has helped me a great deal - my waistline now goes in on both sides and I had one rib that stuck out which no longer does at all. I have a very hard time finding my upper back curve (it may be about gone). I am very thin so it is very easy to tell. I have also started taking magnesium each day which seems to be a natural muscle relaxant. I do not have any other spine problems such as herniated or damaged discs. I believe the emphasis is on the strengthening (strength building while in the stretch position) - not just hanging - which I do and it is a great stretch. I also have a total body works gym - which I have at the highest position and I pull myself up to the top numerous times. Once I'm up at the top, I lift my head just slightly so the stretch is in the upper back. I do this a great deal.

    Another thing I have read other posters discuss is sleeping position. Lay on each side and see which one makes your back curve the opposite way. I have done this also - and had to switch sides. I don't think this has specifically helped perhaps - but there is absolutely no reason to reinforce the curve for 7-8 hours a night. At first I could only lay on the other side for literally just 5-10 minutes - I couldn't take it - very uncomforable/almost painful feeling. Now, I'm completely use to it.

    Anyway, keep posting about your device, it is very very interesting.

  10. #10
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    well...one could always move below the equator, and let the forces of nature put opposite pressure on...
    don't think that would help, either...
    but maybe if the scoli patient is under the age of 8 or so...

    jess

  11. #11
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    Thanks

    Thanx for your posts guys.
    Jess,
    Holy cow I can only imagine the greif you experience. I know how I feel and despite knowing what the surgery is all about, I would probably get it now if my degrees were significant enough. My problems are not as big as yours and they have a big impact on my life. At times I can't even think straight from pain. Are you waiting for surgery? If i was you I would bite the bullit and do it. See if you can get your life back.

    Mehara,
    You are right that could absolutely be a concern about the curve collapse with botox, unless my new little theory has some merrit about the muscle causing the problem. Maybe the weak side would start picking up the slack if I could calm down the muscle tension. Maybe that is! Pretty big maybe with potentially tragic results. This theory of creating muscle symmetry by strengthening the weak side has been around since the dawn of scoliosis treatment. I think it sticks around because it sounds logical. It is difficult to debate because it just seems like there is no other answer. I think if it was the only issue we would have many documented cases of curve correction. But we don't. There is obviously something else at play that we don't get. I kind of think the muscle problem I was describing may have possibly started rotating my spine from constant tension, hence creating a curve, a compensatory curve and a comensatory counter rotation in the thoracic region. The weak side in the lumbar concavity is simply a reaction to the situation, not a cause. Thats me, but what the hell do I know. Hahah!

    rohrer01
    Wow very interesting! I am very interested to hear how the cream works out. Please advise. I wonder if they gave Jess botox because it was in the thoracic region? There would be much less chance of colapse vs lumbar one would think. You got me curious though how do you think you made your curve worse? If I know then maybe I can cross that off of my crazy pursuit list. Jeez that sucks. Hope things get better.

    Djean1

    That is a pretty fancy looking contraption compared to my primitive back poker. Mine is very simple. It is a peice of 2 inch dowel standing vertically screwed to a peice of plywood. It is basically like someone poking you in the back really hard and holding it there. It seems sometimes if i lay on it long enough the muscle stops fighting it and gives up for a while. I believe there is a massge with a similar premise. Maybe pressure point? I cant remember.

  12. #12
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    My damage came from chiropractic treatment. I feel bad 'cause the chiro is really a very nice person and she was mortified, too! My curves are both thoracic. I've heard, and I could be wrong, that thoracic curves tend to progress more than lumbar. It doesn't make physiological sense to me since you would think that the ribs being there would give it more stability. ???

  13. #13
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    Oh, and your dowel treatment makes perfect sense! It sounds like you are doing self pressure point therapy. My GP taught me a technique of putting pressure on a spasming muscle to make it release. It's really hard to reach those muscles yourself!

  14. #14
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    Hey rohrer01

    I did a lengthy bout of chiro stuff as well. I have my suspicions there. I was in bad shape before I started but I was way worse by the time I was done. Would I have been there (worse) anyways without the treatment? Who knows. I think now that chiro is another one of those theories that sounds very logical but may have major flaws when it comes to scoliosis. Chiro theory= Inspire movement where movement has been restricted, (remove evil invisible subluxations). Sounds good! Everyone agrees yeah? What if scoliosis is a hypermobility problem? What if the muscle theory i have been mentioning has validity? You have muscles pulling the spine in the wrong directions. And now you have a chiro helping those muscles do the wrong job by freeing up the spinal segments so they can be pulled even further out of whack! Yipee.

  15. #15
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    Exactly! I do have hypermobile joints. Go figure.

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