Guest guest Posted February 16, 2001 Report Share Posted February 16, 2001 I went into a brace at about your age. Over the next 4-5 years, my curve increased from 27 to 94 degrees.At age 59, I had surgery (last Oct.). The brace did help the pain and balance. ===== Jeanette __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2001 Report Share Posted February 16, 2001 While adult bracing doesn't work to correct the curve they do have their use. I wear a brace when I am out walking or driving for added support. I don't wear it much around the house though because I am afraid that my stomach muscles will suffer making the situation worse. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2001 Report Share Posted February 16, 2001 Hi ... I wore a thin TLSO brace for the last year before my surgery, when I needed to do any standing or walking. Without the brace, I couldn't stand for more than about 5 minutes. I have also been told by several doctors that this is a good short-term fix, but that it can cause abdominal muscle atrophy. I'm in PT now, and when we started, my abdominal muscles were working at about 10% of normal. I don't know whether wearing the brace had anything to do with the lack of abdominal muscle in my case, but it certainly could be connected. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2001 Report Share Posted February 16, 2001 Do you have a photo or link to a photo of the brace? As for braces, one of my friends wore a Milwaukee brace in the 60's instead of having the operation, and the other one had a body cast made, where they put Velcro straps so she could take it off at night and to take a shower (much like the braces today). Both of these women are now my age, mid-40's, and while they are perfectly straight, they are in the " normal range " . And they haven't had any back pain since. So you never know....it all depends on the circumstances and curve I guess. in the East Bay At 05:52 PM 02/16/2001 +0000, you wrote: >While adult bracing doesn't work to correct the curve they do have >their use. I wear a brace when I am out walking or driving for >added support. I don't wear it much around the house though because I >am afraid that my stomach muscles will suffer making the situation >worse. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2001 Report Share Posted February 16, 2001 In a message dated 2/16/01 11:53:28 AM Central Standard Time, legerpj@... writes: << While adult bracing doesn't work to correct the curve they do have their use. I wear a brace when I am out walking or driving for added support. >> Do you find that this helps?? I have an appointment March 9 and am willing to try almost anything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2001 Report Share Posted February 16, 2001 A brace is a simple thing. It is one piece of metal going up the spine to about mid back and two metal bars going side to side. One side to side is in the hips and the other mid back. It is kind of like an H turned on its side. I looked around and I can't find anything on the Internet about it. It is made by OTC in Canada. It is not for scoliosis. It is just a simple lumbar brace for added support. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2001 Report Share Posted February 17, 2001 In a message dated 2/17/01 9:59:19 AM Central Standard Time, legerpj@... writes: << It gives me just enough support. Without it walking is painful after a short time. With the brace I get a bit more time without pain. >> I am the director of a child care center and after walking around for just a little while I have a lot of pain and often use the wall for support when walking and was thinking about looking into something to help get me through the days, especially the longer ones. Part of me day is spent doing administrative duties and while I am up and down moving around some, it bothers me most when I am most active and in and out of the classrooms. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2001 Report Share Posted February 17, 2001 Hi , My son, Mike age 19 just had surgery. We started trying to get him in a brace 2 years ago when he was at 65 degrees and finally gave up on it last fall when he reached 87 degrees. I have read several places that bracing doesn't work on curves over 60 degrees and not with idiopathic scoliosis' (what he has). We were angry with our insurance company and othotist cause nobody told us the clock was running, we just knew he was twisting more and more and getting more and more miserable. I hear that curves over 100 degrees are life-threatening and, since he went from 80-87 in six months, we figured it didn't make sense to wait. He never was in a brace, even after surgery, but has 3 rods (titanium-not Harrington ) in his back and is doing well. My mom went through the Harrington bit in the 60's when she hurt her back and she never was very good. Her surgery failed and 20 years later had to be all redone. She's had it rough and they can't do anything about it. Find a good doctor and keep pressing. Marcia Just joining > Hi: > > I'm , 54 and counting, and am looking for all the info I can get. I have double > double S scoliosis that goes all through my spine and neck and probably have > flat back from 2 spinal fusions as a kid (I certainly have all the symptoms). I've > had numerous bouts of MRI's and Xrays recently, although I've been trying to > convince doctors that I needed this 6 years ago. I won't go through all the symptoms, I'm sure you have ones of your own. I could live with it this way, but > know that it's progressing really fast. I've read that braces don't work on adults, > but want to know if anyone's had luck with them stopping the progression. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2001 Report Share Posted February 17, 2001 I agree, . Mike wore occasionally a TL support elastic brace just for muscle support and it helped some, especially after an adjustment. But he could feel his back twisting in the brace so he would have to take it off. Marcia Re: Just joining > While adult bracing doesn't work to correct the curve they do have > their use. I wear a brace when I am out walking or driving for > added support. I don't wear it much around the house though because I > am afraid that my stomach muscles will suffer making the situation > worse. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2001 Report Share Posted February 17, 2001 I follow the ad " Don't leave home without it " ... Yes I think it works. It gives me just enough support. Without it walking is painful after a short time. With the brace I get a bit more time without pain. There is a warning though. If you wear it a lot your stomach muscles will go and then you will be in a world of hurt. So don't use it all the time during the day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2001 Report Share Posted February 17, 2001 Hi, You mentioned 2 spinal surgeries when you were young. Did these involve Harrington Rods--what part of your spine is fused? Thanks, diane popiuk jettech wrote: > > Hi: > > I'm , 54 and counting, and am looking for all the info I can get. I have double > double S scoliosis that goes all through my spine and neck and probably have > flat back from 2 spinal fusions as a kid (I certainly have all the symptoms). I've > had numerous bouts of MRI's and Xrays recently, although I've been trying to > convince doctors that I needed this 6 years ago. I won't go through all the symptoms, I'm sure you have ones of your own. I could live with it this way, but > know that it's progressing really fast. I've read that braces don't work on adults, > but want to know if anyone's had luck with them stopping the progression. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2001 Report Share Posted February 17, 2001 Dear : Regarding abdominal strength, I was told by a P.T. once that people who have been fused have a harder time strenghtening the abdominal muscles because they can't crunch or bend into the muscles to stress them. I would think that would probably be more of the reason why you're abs are only working at 10%, since, as I recall, your surgery was a number of years ago, What do you think? C.P. On Fri, 16 Feb 2001 10:35:55 -0800, Scoliosis Treatment wrote: > > I wore a thin TLSO brace for the last year before my surgery, when I > needed to do any standing or walking. I have also been told by several > doctors that this is a good short-term fix, but that it can cause > abdominal muscle atrophy. I'm in PT now, and when we started, my > abdominal muscles were working at about 10% of normal. I don't know > whether wearing the brace had anything to do with the lack of abdominal > muscle in my case, but it certainly could be connected. > > Regards, > _______________________________________________________ Send a cool gift with your E-Card http://www.bluemountain.com/giftcenter/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2001 Report Share Posted February 18, 2001 I am in agreement with you about the muscle atrophy. When I began to wear a brace a few years ago I wore it too much and my stomach muscles suffered. I now only use it when I am out of the house walking. When I am home I rarely use it. I guess on a daily basis I probably only use it an hour or two at the most. However it does help when I am walking or doing something physical. I think moderation is the key. > Hi ... > > doctors that this is a good short-term fix, but that it can cause > abdominal muscle atrophy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2001 Report Share Posted February 18, 2001 Hi Carol... I'm sure that's a big part of it. Since my PT has worked with a lot of post-fusion scoliosis patients, she seems to know our anatomy better than most would. She said that I had far less ab muscle than most. Regards, carol perkins wrote: > > Dear : > > Regarding abdominal strength, I was told by a P.T. once that people who have > been fused have a harder time strenghtening the abdominal muscles because > they can't crunch or bend into the muscles to stress them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2001 Report Share Posted February 18, 2001 ... I agree. I have an elastic brace that I purchased at a medical supply place near UCSF. If I know I'm going to have to stand for long periods of time, I put it on. I'm hoping that, with PT, I'll be able to go without it at all. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2001 Report Share Posted February 18, 2001 Hi , Your note made me wonder if being in the body casts after surgery would cause the muscles to atrophy. And, if this is true, once this happens--is it more difficult to build them up again or impossible. I'm not sure what the actual effects of muscle atrophy are. Any comment from you or anyone else in this regard?? Diane Popiuk Leger wrote: > > I am in agreement with you about the muscle atrophy. When I began to > wear a brace a few years ago I wore it too much and my stomach > muscles suffered. I now only use it when I am out of the house > walking. When I am home I rarely use it. I guess on a daily basis I > probably only use it an hour or two at the most. However it does help > when I am walking or doing something physical. I think moderation is > the key. > > > > > > Hi ... > > > > doctors that this is a good short-term fix, but that it can cause > > abdominal muscle atrophy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2002 Report Share Posted May 2, 2002 Welcome to our group! Sorry that it has to be under these circumstances though. I was diagnosed with RA very young at 13 (I'm 40 now you do the math:),and have since been diagnosed with severe spinal OA,fibromyalgia,reynauds, costochondritis/pluerisy & tmj. I have also been through many, many meds. Currently taking methotrexate injections, folic acid, bextra & ultracet and a whole array of vitamins. I am still working full time & I also teach religious education classes. We are here for you! God Bless, Barbara circleofriendship <circleofriendship@...> wrote: Hello Everybody!We have just joined this group today.Our names are as follows: -- has ankylosingspondylitis -- realized that I was experienced some symptoms firstly of arthritis approximately 13 years ago or so. Visited a variety of physicians of whom only sent me off to physio therapy and did not further bother to investigate the possibility of my having any form of arthritist until about 2 years ago when I was first diagnosed with "A.S." Luckily enough, I a number of months ago, I met up with this young lady whom is also a member of this group with me by the name of Charmaine. Being as she has been a "volunteer" over the course of her life to a variety of organizations with different disabilities -- as well as working at caregiving hospices - she was quite familiar with my condition -- with her knowledge and support has finally got me on a presciption of Arthrotec just over a month ago.Charmaine -- In 1989 sometime, I was in a severe auto wreck. Was thrown around considerably. Several years later, I started to experience extreme pain. It was discovered that I had a bulging - deteriating disc - however the scoliosis was not discovered until about 7 years ago -- just recently it was discovered that I have torn muscles in my neck adjacent to my left shoulder. Doctor has indicated that over the course of the years probably shortly after the car wreck that I have Rheumatoid arthritis in my spine, neck and bursitis in my left knee.We felt it would be interesting to join this group and chat with other people who have similar experiences with arthritis and share ideas on to live with our own.We have also created a group called ARTHRITIS FAMILY CIRCLE OF FRIENDS which you will find listed in the bookmarks. Hope to chat with you all sometime.Thanks for allowing us to be a member of your group.Sincerely, & Charmainedavidandcharmaine@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2002 Report Share Posted May 2, 2002 A very friendly " hello " back to and Charmaine: Welcome to our group. You both certainly have an interesting story. Hope we can be of help to you. Beatrice >From: " circleofriendship " <circleofriendship@...> >Reply-Rheumatoid Arthritis >Rheumatoid Arthritis >Subject: Just Joining >Date: Sun, 28 Apr 2002 20:32:04 -0000 > >Hello Everybody! > >We have just joined this group today. > >Our names are as follows: > > -- has ankylosingspondylitis -- realized that I was experienced >some symptoms firstly of arthritis approximately 13 years ago or so. >Visited a variety of physicians of whom only sent me off to physio >therapy and did not further bother to investigate the possibility of >my having any form of arthritist until about 2 years ago when I was >first diagnosed with " A.S. " Luckily enough, I a number of months >ago, I met up with this young lady whom is also a member of this group >with me by the name of Charmaine. Being as she has been a " volunteer " >over the course of her life to a variety of organizations with >different disabilities -- as well as working at caregiving hospices - >she was quite familiar with my condition -- with her knowledge and >support has finally got me on a presciption of Arthrotec just over a >month ago. > >Charmaine -- In 1989 sometime, I was in a severe auto wreck. Was >thrown around considerably. Several years later, I started to >experience extreme pain. It was discovered that I had a bulging - >deteriating disc - however the scoliosis was not discovered until >about 7 years ago -- just recently it was discovered that I have torn >muscles in my neck adjacent to my left shoulder. Doctor has indicated >that over the course of the years probably shortly after the car wreck >that I have Rheumatoid arthritis in my spine, neck and bursitis in my >left knee. > >We felt it would be interesting to join this group and chat with other >people who have similar experiences with arthritis and share ideas on >to live with our own. > >We have also created a group called ARTHRITIS FAMILY CIRCLE OF >FRIENDS which you will find listed in the bookmarks. Hope to chat >with you all sometime. > >Thanks for allowing us to be a member of your group. > >Sincerely, > > & Charmaine >davidandcharmaine@... > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Welcome, Sybil. As I told you, the MCL site and this one are mines of information. Glad you joined in. Bettie Jane Grant, Tallahassee. PS: You do have one of the strangest cases I have heard of (only in bone marrow). Just joining Hello, I have just joined this group on the recommendation of one of the members I was diagnosed with mantle cell lymphoma 10 months ago, in October 2003, but my diagnosis has since been changed to SLL, although my doctors still seem a bit uncertain. I had 90% bone marrow involvement when diagnosed, so I was treated with CHOP x 8. It was quite effective, but I still have lymphoma in my bone marrow. So far it has not shown up anywhere else. I hope to learn more about SLL from the members of this group. Sybil Whitman, age 48 Fredericton, New Brunswick, Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Welcome to our elite group, Sybil. I too have been recently diagnosed (in January) and I haven't been treated yet, just watch and wait which is hard to do so I have been experimenting with some naturopathic suppliments, diet changes, accupuncture, etc. but it's too soon to tell if it is helping. Carole MacIntyre-59 Montpelier, Vt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Welcome Sybil and Carole - I was misdiagnosed as mantle cell initially, also. Within a week it was discovered that it was CLL/SLL. Ive been in watch and wait since Dec. 2003 and just started rituxin . I'm completing my second session. Hope things go well with you both. I know others have mentioned the CLL site to you which I would also like to recommend. Carole - you specifically would probably be interested in the articles on green tea. Bonnie Re: Just joining Welcome to our elite group, Sybil. I too have been recently diagnosed (in January) and I haven't been treated yet, just watch and wait which is hard to do so I have been experimenting with some naturopathic suppliments, diet changes, accupuncture, etc. but it's too soon to tell if it is helping. Carole MacIntyre-59 Montpelier, Vt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 Good luck with the Ritucin, Bonnie.I will definitely check out the articles on green tea. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 Thanks to all those who have welcomed me to this site. I'm still trying to read up on SLL, which I understand is much the same as CLL, although I'm not sure how the doctors decide to call it one thing or the other. It's reassuring to hear that many of you were first diagnosed with mantle cell lymphoma, as I was. I'm still hesitant to trust the second diagnosis (it was changed to SLL once before and then back to MCL), since I've never had a FISH test or a lymph node biopsy. In short, I'm beginning to think my bone marrow must look like alphabet soup, with a little bit of all kinds of NHL in it. The last oncologist I saw (Aug. 10) even said that it's possible to have two kinds at once and sometimes one BM biopsy will show one kind and a second biopsy will show another. Doubt, confusion, and chemo brain reduced me to jelly this winter. Now I'm back at work and feeling pretty well. Whichever kind of NHL I have, CHOP x 8 seems to have beaten it down, at least for a while. Hope to hear from more of you soon, Sybil Whitman, age 48 Dx. Oct. 2003, mantle cell lymphoma, Stage IV with 90% bone marrow involvement, CHOP x 8, now in partial remission Re: Just joining > > Welcome to our elite group, Sybil. I too have been recently diagnosed > (in January) and I haven't been treated yet, just watch and wait which > is hard to do so I have been experimenting with some naturopathic > suppliments, diet changes, accupuncture, etc. but it's too soon to tell > if it is helping. > Carole MacIntyre-59 > Montpelier, Vt > > > > > Quote Link to comment Share on other sites More sharing options...
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