Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 I have written down the name of the brace. We are currently in Seattle and at the mercy of Children's hospital- I found a couple of orthopedics but then only work with adult patients. However, the Dr we saw seems like even if he doesn't suggest it, he would be willing to prescribe as long as it wouldn't hurt her- worth a try to prevent further damage. Thank you Diane Re: New Member Get yourself to a good scoliosis specialist. I have scoliosis and had 3 surgeries. The last one with Dr. Boachie in NYC. Thank God for him. Anyway I was keeping a close eye on my kids and my daughter at around 12 was diagnosed with scoliosis. In October it was 15 degrees thoracic and 5 lumbar. When she was x-rayed again 3 months later she had progressed to 21 degrees/15 degrees. That is when I took her to Dr. Boachie. He had explained to me you need to brace a child before they complete puberty and their bones are completely done growing. The object in bracing is to keep the curve from getting worse while they are in this stage. The theory is that if you can keep a curve below 35 degrees after reaching puberty, the curve should not progress into adulthood. Not only did he keep her curve from progressing he got it back down to 12 degrees/0 degrees. She wore a Spinecore brace for 2 years. I did a lot of research and everything he said is the true opinion of most scoliosis specialists. Don't wait until your daughter is worse. Get her to someone who really knows this disease - not just an orthopedist. Sometimes even bracing won't keep a curve from progressing. He said he would know that within 6 months if the brace was working or not. It was definitely worth doing the research and the pain in the neck of riding into the city every month. We both go for check-ups with Dr. Boachie in 2 weeks. He is still monitoring her but so far so good. Good luck, Kathy ************ **Start the year off right. Easy ways to stay in shape. http://body. aol.com/fitness/ winter-exercise? NCID=aolcmp00300 000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Diane, Most curves are idiopathic, which simply means there is no known cause. That doesn't mean there are no treatments. My curve was idiopathic as was the case of all the girls I knew in school who had scoliosis. All of us were treated by different doctors at different times, but we all wound up wearing braces & having surgery. ~Moonbeam ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Diane, Your orthopedist sd that since it was idiopathic that when she was done growing it would stabilize...that doesn't address the issue of how much it will progress while she is growing. During growth spurts is when mine progressed the most. He is correct in saying that PT could help the comfort level & it cannot correct a curve. Whatever level of activity she can perform to strengthen & stretch will be beneficial. Where is her curve? Is it a C curve? Thoracic (shoulder)? If it's at all possible you should see a scoliosis specialist & not just an orthopedist. The scoliosis specialists know so much more about it than orthopedists do. If you can't find a scoliosis specialist, then do get a second opinion from another orthopedist. It sounds like the one you have consulted is basing treatment (or nontreatment in this case)on the fact that it's idiopathic. Ask him if it were not idiopathic how would he treat it. Let's say you have a cold, you caught from your sister. You'd treat the symptoms. What if you had a cold you didn't know how you caught? You'd treat the symptoms. I know that's oversimplifying, but it's basically the same thing. The point is to treat the curve while it's small. The more it progresses, the more it will have to be corrected via any method - bracing, surgery, etc. Since she already has muscle weakness & lung issues, the progression of the curve will further affect these areas. As for her hip hurting, it could be any number of things. It could be the scoliosis & it could be something else. Remember when the spine curves, the body compensates constantly trying to maintain the vertical position. Muscles & bones are being pulled in ways they normally wouldn't. Is the hip that's hurting on the same side as the curve? ~Moonbeam ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 So it sounds like he perhaps did not completely inform us- he did say based on her hip xray that he thinks she is almost done growing, which he said was good news. I know you can see it her shoulders, and her neck, but I guess you would say the curve is at the thoracic level. The cardiologist we saw(extra caution due the muscle disorder) said that the curve was not interfering with her lungs or heart right now. What you say makes very good sense. Her next appt is the beginning of March with him. However she has an appt with her family Dr next week and I am going to ask her to look again and ask her advice. It makes good sense about the bracing. The orthopedic said something about how using a brace before 35 degrees really has been proven to slow or stop things- I also wonder if he is worried about reducing her already reduced muscle stability by bracing- I really think the hip is posture related. I have a horrible back(mild scoliosis, but it is other issues causing grief)and if I throw my cervical out I change how I stand which cause all sort of havoc... I am going to do a little research about finding someone that is a scoliosis specialist that will see children. Hopefully with in driving distance, it would be good I think to have a second opinion. Thank you Diane Re: New Member Diane, Your orthopedist sd that since it was idiopathic that when she was done growing it would stabilize... that doesn't address the issue of how much it will progress while she is growing. During growth spurts is when mine progressed the most. He is correct in saying that PT could help the comfort level & it cannot correct a curve. Whatever level of activity she can perform to strengthen & stretch will be beneficial. Where is her curve? Is it a C curve? Thoracic (shoulder)? If it's at all possible you should see a scoliosis specialist & not just an orthopedist. The scoliosis specialists know so much more about it than orthopedists do. If you can't find a scoliosis specialist, then do get a second opinion from another orthopedist. It sounds like the one you have consulted is basing treatment (or nontreatment in this case)on the fact that it's idiopathic. Ask him if it were not idiopathic how would he treat it. Let's say you have a cold, you caught from your sister. You'd treat the symptoms. What if you had a cold you didn't know how you caught? You'd treat the symptoms. I know that's oversimplifying, but it's basically the same thing. The point is to treat the curve while it's small. The more it progresses, the more it will have to be corrected via any method - bracing, surgery, etc. Since she already has muscle weakness & lung issues, the progression of the curve will further affect these areas. As for her hip hurting, it could be any number of things. It could be the scoliosis & it could be something else. Remember when the spine curves, the body compensates constantly trying to maintain the vertical position. Muscles & bones are being pulled in ways they normally wouldn't. Is the hip that's hurting on the same side as the curve? ~Moonbeam ____________ _________ _________ _________ _________ _________ _ Looking for last minute shopping deals? 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Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 I can tell you from experience as all these people can - GO SEE A SCOLIOSIS SPECIALIST. Idiopathic means it is not congenital. Congenital meaning she wasn't born with it or being caused by another disease like cerebral palsy. My daughter and I are actually in a study where they are trying to locate the marker or gene that causes scoliosis or to find out why some people progress and others don't. But I can tell you when I was 12 my curve was 35 degrees. Was sent to a chiropractor for the discomfort and muscle strengthening. Sure I felt better but it did nothing for the curve. They didn't know back in the 1970's at what degree you would progress. My parents opted out of surgery. By the time I was 16 my thoracic curve was 48 degrees. By the time I had my first surgery in 1997 at age 37 my thoracic curve was 72 degrees. Please take her to someone else. Go on line and do your research. Good luck. Kathy **************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Diane, I understand what you are saying about reducing the muscle stability by bracing. However, she would not be in the brace 24 hours a day. I was scheduled to wear a Milwaukee Brace for 23 hours a day 30+ years ago, but I spent a lot of time with all forms of exercise which were encouraged by my doc & physical therapists. Swimming, gymnastics, ballet, jazz, tap, bicycling, climbing trees, and just plain old running & playing since I was aged 7-11. I was a very active kid. With her muscle issues she already has does that affect her playing & activities? ~Moonbeam ________________________________________________________________________________\ ____ Never miss a thing. Make your home page. http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Kathy is right. Go to the Scoliosis Research Society web page and look up doctors in your state. It is imperative that you get a doctor who is a SCOLIOSIS SPECIALIST; someone who does nothing but spinal deformity surgery, and performs many of these surguries per year. Not all orthopedists handle scoliosis, even though they do surgery on backs. My internist was the first to admit that he knew NOTHING about scoliosis and was flabbergasted when I told him that I was going to have the surgery. His first impression was that I was too old, and that it would be too hard on me. You have to find your own specialist and you have to get educated. Do your research. Good luck to you. Patti Re: Re: New Member I can tell you from experience as all these people can - GO SEE A SCOLIOSIS SPECIALIST. Idiopathic means it is not congenital. Congenital meaning she wasn't born with it or being caused by another disease like cerebral palsy. My daughter and I are actually in a study where they are trying to locate the marker or gene that causes scoliosis or to find out why some people progress and others don't. But I can tell you when I was 12 my curve was 35 degrees. Was sent to a chiropractor for the discomfort and muscle strengthening. Sure I felt better but it did nothing for the curve. They didn't know back in the 1970's at what degree you would progress. My parents opted out of surgery. By the time I was 16 my thoracic curve was 48 degrees. By the time I had my first surgery in 1997 at age 37 my thoracic curve was 72 degrees. Please take her to someone else. Go on line and do your research. Good luck. Kathy **************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Yes it does. She can do low impact activities, but if she over exerts herself it can cause an irregular heart rhythm- so, until they can figure out how to prevent this(so far they have no ideas) she is limited to activities where her heart rate doesn't jump... When we lived in the South(2 years ago) she swam a lot as we owned our own pool. However, she is absolutely sensitive about how her back looks in a suit so she won't go to a public pool here(seattle area). She does daily stretching, and instead of a computer chair she sits a yoga ball- to help with stability without exertion. She walks a tread mill for about 10-20 a day(well we try to encourage daily), and will pedal slowly on the bike while watching the tube. She really physically appears quite normal to me, put I do notice her hunching now... she can do whatever she wants just not for as nearly as long-she and her sister do some pilates together a few times a week-more in play while they chatter though... We have had a very very hard time finding a PT that gets not to stress her-they always act so stunned when it is obvious she is in stress... So, we are actually putting our house on the market after just 2 years in the NW to move back to TX where we can afford to buy a house with a pool. Hopefully heated. It seems swimming is really the best thing for her. However, the heat in the south brings its own issues- she overheats very fast so she can't rid e the school bus(no AC on the tin can) can't really play outside- so even going to the zoo has to be planned for cool winter days. We have noticed a decline in her overall health since we moved here- probably from the lack of activity as well as the fatigue and pain she is suffering. We see the allergist on Monday- but that is another story. Fingers crossed our house sells easily and my husband can find a job again in the southern region. Worth it though to get better care(Houston medical center is pretty good) and for her to have access to exercise that she needs and feels comfortable. The last thing we want is for her to feel any more ackward then teenagers already feel. How often should she get xrays for checking the scoliosis? Is every 6 months too much or too little? we are a little nervous about her having soo many xrays at her age... Thanks Diane Re: New Member Diane, I understand what you are saying about reducing the muscle stability by bracing. However, she would not be in the brace 24 hours a day. I was scheduled to wear a Milwaukee Brace for 23 hours a day 30+ years ago, but I spent a lot of time with all forms of exercise which were encouraged by my doc & physical therapists. Swimming, gymnastics, ballet, jazz, tap, bicycling, climbing trees, and just plain old running & playing since I was aged 7-11. I was a very active kid. With her muscle issues she already has does that affect her playing & activities? ~Moonbeam ____________ _________ _________ _________ _________ _________ _ Never miss a thing. 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Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Any recommendations for scoliosis specialists in the Greater Seattle area? Or since we know Houston, any in Houston? I am searching and not finding any and our family Dr doesn't know of anyone outside of childrens. Would Shriners have specialist? They have Shriners in spokane and I think Portland OR. Thanks Diane Re: Re: New Member I can tell you from experience as all these people can - GO SEE A SCOLIOSIS SPECIALIST. Idiopathic means it is not congenital. Congenital meaning she wasn't born with it or being caused by another disease like cerebral palsy. My daughter and I are actually in a study where they are trying to locate the marker or gene that causes scoliosis or to find out why some people progress and others don't. But I can tell you when I was 12 my curve was 35 degrees. Was sent to a chiropractor for the discomfort and muscle strengthening. Sure I felt better but it did nothing for the curve. They didn't know back in the 1970's at what degree you would progress. My parents opted out of surgery. By the time I was 16 my thoracic curve was 48 degrees. By the time I had my first surgery in 1997 at age 37 my thoracic curve was 72 degrees. Please take her to someone else. Go on line and do your research. Good luck. Kathy ************ **Start the year off right. Easy ways to stay in shape. http://body. aol.com/fitness/ winter-exercise? NCID=aolcmp00300 000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 In a message dated 1/12/08 11:38:19 AM, neumandiane@... writes: > Would Shriners have specialist? They have Shriners in spokane and I think > Portland OR. > YES! ************** Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 Just looked up the list, Her Dr is on the list- should I still go for a second opinion? Re: Re: New Member I can tell you from experience as all these people can - GO SEE A SCOLIOSIS SPECIALIST. Idiopathic means it is not congenital. Congenital meaning she wasn't born with it or being caused by another disease like cerebral palsy. My daughter and I are actually in a study where they are trying to locate the marker or gene that causes scoliosis or to find out why some people progress and others don't. But I can tell you when I was 12 my curve was 35 degrees. Was sent to a chiropractor for the discomfort and muscle strengthening. Sure I felt better but it did nothing for the curve. They didn't know back in the 1970's at what degree you would progress. My parents opted out of surgery. By the time I was 16 my thoracic curve was 48 degrees. By the time I had my first surgery in 1997 at age 37 my thoracic curve was 72 degrees. Please take her to someone else. Go on line and do your research. Good luck. Kathy ************ **Start the year off right. Easy ways to stay in shape. http://body. aol.com/fitness/ winter-exercise? NCID=aolcmp00300 000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 I went to the Scoliosis Research Society to locate a physician in your area. But they want your address. So you may want to go to this web link and read for yourself. Also, I checked on the page called SRS Fellowship for doctors in Washington. My search found 13 fellows. You would want to start with the " active " members first. Hope this helps. Patti http://www.srs.org/locator/ Your search found 13 fellows. Member Name Member Class Region Virginia M. Badger, MD Emeritus Lacey, WA W. Florence, MD Emeritus Steilacoom, WA K. Gustafson, MD Emeritus Olympia, WA H. Hurley, MD Emeritus Spokane Valley, WA Reginald Quentin Knight, MD Active Kirkland, WA Walter F. Krengel III, MD Active Bellevue, WA Edwin L. Laurnen, MD Emeritus Bellevue, WA Marr P. Mullen, MD Emeritus Mercer Island, WA R. Osebold, MD Active Spokane, WA Kit M. Song, MD Active Seattle, WA W. Tupper, MD Emeritus Seattle, WA Theodore A. Wagner, MD Active Seattle, WA Klane M. White, MD, MSc Candidate Seattle, WA Re: Re: New Member I can tell you from experience as all these people can - GO SEE A SCOLIOSIS SPECIALIST. Idiopathic means it is not congenital. Congenital meaning she wasn't born with it or being caused by another disease like cerebral palsy. My daughter and I are actually in a study where they are trying to locate the marker or gene that causes scoliosis or to find out why some people progress and others don't. But I can tell you when I was 12 my curve was 35 degrees. Was sent to a chiropractor for the discomfort and muscle strengthening. Sure I felt better but it did nothing for the curve. They didn't know back in the 1970's at what degree you would progress. My parents opted out of surgery. By the time I was 16 my thoracic curve was 48 degrees. By the time I had my first surgery in 1997 at age 37 my thoracic curve was 72 degrees. Please take her to someone else. Go on line and do your research. Good luck. Kathy ************ **Start the year off right. Easy ways to stay in shape. http://body. aol.com/fitness/ winter-exercise? NCID=aolcmp00300 000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 Most people would tell you " yes " . Getting another opinion for something this important is not wasted time. And your insurance may require it. I hope you have good insurance. We always made sure that we had what is called PPO coverage. That way I was always able to choose my own doctors. We pay a lot for it, but we always knew that I would need surgery someday. One thing my doctor's always told me was to keep my own x-rays. Don't ever leave them in the custody of the doctor. This way, if you move or change doctors, you still have your history of the curve and its progression. I didn't know that I could keep my own x-rays back when this first became an ordeal for me. So I showed up with only a record of how many inches I had lost over the years. That in itself was significant...I went from 5'6 " as a teenager to 5'1-3/4 " , all due to the scoliosis. So, yes you can ask for your x-rays back. They are yours. Take them with you when you go to the second opinion doctor. And take them with you when you leave! We will be praying for your daughter, and you. Patti Re: Re: New Member I can tell you from experience as all these people can - GO SEE A SCOLIOSIS SPECIALIST. Idiopathic means it is not congenital. Congenital meaning she wasn't born with it or being caused by another disease like cerebral palsy. My daughter and I are actually in a study where they are trying to locate the marker or gene that causes scoliosis or to find out why some people progress and others don't. But I can tell you when I was 12 my curve was 35 degrees. Was sent to a chiropractor for the discomfort and muscle strengthening. Sure I felt better but it did nothing for the curve. They didn't know back in the 1970's at what degree you would progress. My parents opted out of surgery. By the time I was 16 my thoracic curve was 48 degrees. By the time I had my first surgery in 1997 at age 37 my thoracic curve was 72 degrees. Please take her to someone else. Go on line and do your research. Good luck. Kathy ************ **Start the year off right. Easy ways to stay in shape. http://body. aol.com/fitness/ winter-exercise? NCID=aolcmp00300 000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 Two of the best are Dr. Tribus in Madison, WI, and Dr. s in Phoenix, AZ. They both specialize in spinal deformity and scoliosis. They are both conservative with treatment, doing the least invasive surgery possible. They listen well and are very experienced and talented, and perform out of top quality hospitals. Re: Re: New Member I can tell you from experience as all these people can - GO SEE A SCOLIOSIS SPECIALIST. Idiopathic means it is not congenital. Congenital meaning she wasn't born with it or being caused by another disease like cerebral palsy. My daughter and I are actually in a study where they are trying to locate the marker or gene that causes scoliosis or to find out why some people progress and others don't. But I can tell you when I was 12 my curve was 35 degrees. Was sent to a chiropractor for the discomfort and muscle strengthening. Sure I felt better but it did nothing for the curve. They didn't know back in the 1970's at what degree you would progress. My parents opted out of surgery. By the time I was 16 my thoracic curve was 48 degrees. By the time I had my first surgery in 1997 at age 37 my thoracic curve was 72 degrees. Please take her to someone else. Go on line and do your research. Good luck. Kathy ************ **Start the year off right. Easy ways to stay in shape. http://body. aol.com/fitness/ winter-exercise? NCID=aolcmp00300 000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 I would really recommend traveling to Phoenix to see Dr. es. It's not too far a trip from Houston. Also, there is a place in northern Texas I've seen on the internet called Consulting Orthepedics or something like that. I've emailed back and forth with them, but they don't take medicare, so I didn't keep going. I'm traveling to Phoenix for my revision surgery, and I know I'm getting excellent care. My original surgeon recommended Dr. s. He had him perform surgery on his own mother. Re: Re: New Member I can tell you from experience as all these people can - GO SEE A SCOLIOSIS SPECIALIST. Idiopathic means it is not congenital. Congenital meaning she wasn't born with it or being caused by another disease like cerebral palsy. My daughter and I are actually in a study where they are trying to locate the marker or gene that causes scoliosis or to find out why some people progress and others don't. But I can tell you when I was 12 my curve was 35 degrees. Was sent to a chiropractor for the discomfort and muscle strengthening. Sure I felt better but it did nothing for the curve. They didn't know back in the 1970's at what degree you would progress. My parents opted out of surgery. By the time I was 16 my thoracic curve was 48 degrees. By the time I had my first surgery in 1997 at age 37 my thoracic curve was 72 degrees. Please take her to someone else. Go on line and do your research. Good luck. Kathy ************ **Start the year off right. Easy ways to stay in shape. http://body. aol.com/fitness/ winter-exercise? NCID=aolcmp00300 000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2008 Report Share Posted January 13, 2008 Diane, Xrays have dramatically improved over the years with the radiation exposure being reduced tremendously. (30-40 yrs ago for example exposure was 100+ millirads per xray & today it's 3 millirads per xray - we get more radiation from our exposure to natural environments such as the soil, rocks, etc.) Also, today they place lead shields over the breasts & groin to protect those less dense areas. With 13 surgeries I've had hundreds -upwards of a thousand xrays with no bad effects. Don't let the xrays be a big concern for you. Also, today the films are faster & 'take' the image so the amount of time the machine is on is very brief compared to years ago. How often you go for follow-up depends on your doctor and how much her curve is progressing. Swimming is an excellent activity-the water supports the muscles as well as strengthens them. Is there not a YMCA with a heated pool where you currently live? I understand her self-consciousness and your wanting to protect her from any taunting. Yes, children & adults will look, but sometimes our sensitivities are overtly so and just getting out there over & over shows you that you are not that different after all. I went to a public pool my entire childhood, followed by summers at the beach. I had a very large prominent rib hump, but because I didn't call attn to it, or pay any attn to it myself, most ppl didn't either. I understand her issue of getting winded easily. You see, my first two surgeries were open-heart surgeries due to congenital defects (patent ductus & VSD holes). Now once again I'm faced with a hole in my heart (ASD) & it's due to be repaired as soon as we can get my potassium & iron deficiencies up to a safe level for surgery. Whatever she is able to do as far as a slow pedal, playing around with pilates, walking on the treadmill - these are all very good. I'm pleased that you are moving back to TX where the weather will be such that she can swim in a private pool. That's a big decision for a family to make, especially since you've been there for such a short time. It's obvious you love her very much. If either you or she wants to email me privately, I'd be very happy to talk with both of you. Since I went thru it as a kid, maybe I can address some questions she has. Also, I've been a counsellor & mentor, so I can talk to kids on their own level. Kids & animals are drawn to me, so that should tell you something. Maybe you'll be able to find a support group once you move back to TX. There are more & more of them around the country for both the scoliosis patients themselves & also for the families. That would've been a great thing for me to talk to someone when I was going thru it, but it wasn't available at that time. You can look up the support groups thru the national scoliosis website & chapters are listed all over the US. I hope I've been of some help. ~Moonbeam ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2008 Report Share Posted January 13, 2008 Diane, Shriner's is often an excellent place to go. Definitely investigate the one near you to see if they have qualified doctors in this field. ~Moonbeam ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2008 Report Share Posted January 13, 2008 Diane, Patti is right. You are allowed to keep your own x-rays & this is a fabulous idea. I have all of my x-rays going back to my very first surgery in 1967. It's great to have them on hand if you switch doctors, or are seeing a lot of consults in a short period of time - that way you don't have to keep checking out your x-rays. Also, some hospitals destroy films after a certain length of time. I went to get some from my local hospital 2 or 3 yrs later & they were destroyed. If I'd known that I would've gotten them long before, but I was having the procedure done again & they wanted a comparison to the first images. So now, whether it's an xray, an echo, an MRI - any type of image I keep it myself. ~Moonbeam ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2008 Report Share Posted January 13, 2008 Yes, I have my own Xrays too. When I went to the surgeon in SF for my preop, she and her staff were amazed that I had Xrays going back to 86. They said they don't see that very often. Debbie L Howell <moonbeamblessings@...> wrote: Diane, Patti is right. You are allowed to keep your own x-rays & this is a fabulous idea. I have all of my x-rays going back to my very first surgery in 1967. It's great to have them on hand if you switch doctors, or are seeing a lot of consults in a short period of time - that way you don't have to keep checking out your x-rays. Also, some hospitals destroy films after a certain length of time. I went to get some from my local hospital 2 or 3 yrs later & they were destroyed. If I'd known that I would've gotten them long before, but I was having the procedure done again & they wanted a comparison to the first images. So now, whether it's an xray, an echo, an MRI - any type of image I keep it myself. ~Moonbeam __________________________________________________________ Looking for last minute shopping deals? Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2008 Report Share Posted July 13, 2008 Melody, Welcome to the group. It is great to have somewhere to go to and express yourself. Sorry to hear you have Lupus and RA. I have Lupus also, OA, Osteoporous, of course Fibro and a lot of other things going on with my body. I had a stroke in 1997, and that is when I found out I also had Lupus. I had a great Neurologist who decided to run more tests on me, and after the cat scans, the MRI;s, the Angiogram and ultrasounds, they found a bloot clot in my left Carotid Artery in my neck and they won't even dare go in there because it could break loose and go to my brain, or elsewhere. Anyway, welcome again. I am 54, divorced and have outlived 3 ex husbands. i have my cats who are better company for me anyway. Bye for now, take care. T. from Tennessee**************Get the scoop on last night's hottest shows and the live music scene in your area - Check out TourTracker.com! (http://www.tourtracker.com?NCID=aolmus00050000000112) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2008 Report Share Posted July 13, 2008 Melody, welcome to our group. I hope you find some answers and support for your medical conditions. have you every looked into the antibiotic protocol for your RA & Lupus? I had RA, did the protocol and got well. I also experienced CFS and that is also so much better. I lead a pretty normal life actually. I do have FMS and Myofascial Pain Syndrome (MPS) but also have that under control by taking Low Dose Naltrexone and supplements. Could the involuntary movements be caused by a medication that you are taking for autoimmune problems? So many drugs do have certain side effects. If you are interested in the antibiotic protocol, there are a lot of information on the internet, and it does work! One of the sites is www.roadback.org and the one for Low Dose naltrexone, which is also effective for RA, FMS, and MPS is www.low dose naltrexone.org Feel free to email me if I can be of more help. Just use my email address. Elaine > > I am a new member and this is my first effort to join the group. I've been diagnosed with Rheumatoid Arthritis, Fibromyalgia, and quite recentlly Lupus. As a pre-teen I had serious sleep problems and on a few occasions had involuntary limb movements and near paralysis in my arm when I would make an effort to clean my room. My rheumatologist is saying that chronic fatigue syndrome could explain the movements. The movements have returned and I've not gotten rid of them for going on 4 years. Neurologists have given me a psychiatric explanation. In my research on chronic fatigue syndrome (I do have all the symptoms except sore throat) I have not seen anything about the limb movements mentioned except during sleep and that I don't have. Does anyone have any input on involuntary limb and body movements that are possibly connected to Chronic Fatigue Syndrome or who have experienced this? Any input would be greatly appreciated. Thank God for Dominie! Melody > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2008 Report Share Posted July 14, 2008 When my daughter was born prematurely and I came home from the hospital, my body would jump every time I started to fall asleep. The doc then put me on an anti-psychotic drug but I don't know which one. My body still does this but not as violently as it did back then. Deb Halvorson new member I am a new member and this is my first effort to join the group. I've been diagnosed with Rheumatoid Arthritis, Fibromyalgia, and quite recentlly Lupus. As a pre-teen I had serious sleep problems and on a few occasions had involuntary limb movements and near paralysis in my arm when I would make an effort to clean my room. My rheumatologist is saying that chronic fatigue syndrome could explain the movements. The movements have returned and I've not gotten rid of them for going on 4 years. Neurologists have given me a psychiatric explanation. In my research on chronic fatigue syndrome (I do have all the symptoms except sore throat) I have not seen anything about the limb movements mentioned except during sleep and that I don't have. Does anyone have any input on involuntary limb and body movements that are possibly connected to Chronic Fatigue Syndrome or who have experienced this? Any input would be greatly appreciated. Thank God for Dominie! Melody Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2008 Report Share Posted July 14, 2008 Melody, Hello again. This is . My body jumps every time I close my eyes and try to rest or go to sleep, I take Flexeril which helps some., but my whole body will jump up almost out of my chair I sleep in because I don't have a bed. I hate to jerk like that. One of my cats will be on my lap, and I will jerk and it really scares them and they jump too! Goodnight to all, T. from TN.**************Get the scoop on last night's hottest shows and the live music scene in your area - Check out TourTracker.com! (http://www.tourtracker.com?NCID=aolmus00050000000112) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2008 Report Share Posted September 7, 2008 All, Please take it from someone who suffered from heavy metal poisoning - home made CS is just not worth the risk. Unless you or your pets have tried everything else and you are on your deathbed and can't afford store bought silver, then I would highly recommend against homemade CS. Sure, it is great to spray on your armpits or use it to spray down the counters, but the particles are too big for your body to really be able to process them. You will notice a very sore chin after just a few days on homemade CS. This is because the body stores excess silver in the face which is real close to the brain. If you want Autistic pets, then by all means please give them homemade CS. Cheers,BradOn Fri, Sep 5, 2008 at 9:17 PM, sgm789 <sgm789@...> wrote: Just bought a Silver Pulser Lite for $50.(Sota still has some left) and made 1st batch of CS. Very easy to make! RE: Giving to pets: How much CS do you add per gallon of water? Is it ok for both cats & dogs? Thanks Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008  there are thousands (at least) of folks who have had no such experience. not with their faces, chins, or pets. how about telling the whole story of your metal poisoning with CS ? possibly we can determine where the problems came from. and how about taking it to the silverlist.org list, where some of the best minds re CS participate? you (and the rest of us) might end up with a better understanding of what happened and how to avoid such problems other than just giving up such a valuable resource? cheers, bobL -----Original Message-----From: [mailto: ]On Behalf Of Brad AndersenSent: Sunday, September 07, 2008 11:47 PM Subject: Re: New member All, Please take it from someone who suffered from heavy metal poisoning - home made CS is just not worth the risk. Unless you or your pets have tried everything else and you are on your deathbed and can't afford store bought silver, then I would highly recommend against homemade CS. Sure, it is great to spray on your armpits or use it to spray down the counters, but the particles are too big for your body to really be able to process them. You will notice a very sore chin after just a few days on homemade CS. This is because the body stores excess silver in the face which is real close to the brain. If you want Autistic pets, then by all means please give them homemade CS.Cheers,Brad On Fri, Sep 5, 2008 at 9:17 PM, sgm789 <sgm789@...> wrote: Just bought a Silver Pulser Lite for $50.(Sota still has some left)and made 1st batch of CS. Very easy to make!RE: Giving to pets: How much CS do you add per gallon of water? Is itok for both cats & dogs?ThanksSteve Quote Link to comment Share on other sites More sharing options...
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