From: bounce-scoliosis To: scoliosis-digest@ai.mit.edu Subject: scoliosis V1 #655 Reply-To: Errors-To: bounce-scoliosis Precedence: bulk scoliosis Friday, 28 November 1997 Volume 01 : Number 655 Today's subjects for scoliosis and scoliosis-teens: Question [Albrecht Marignoni ] Re: G [Kathy Stott ] Re: Copes ["Patty Aguila" ] Re: I'm thankful for... ["Patty Aguila" ] Re: Funny e-mail [Cntry6978@aol.com] Re: Surgery patients ["Patty Aguila" ] Re: Copes ["Joe Smith" ] My daughter [Sag230@aol.com] Re: Funny e-mail [MsMtrMaid@aol.com] Re: G [G ] Re: Question ["Berbrich" ] all about the Prividence brace ["Berbrich" ] Re: Copes ["Berbrich" ] Re: all about the Prividence brace [Peggy ] Re: Parents of kids w/ Congenital Scoliosis [korey ] New Medical Digest "Rules" [Rufus Brown ] Big Day in the Slam Book II [Carl Leonard ] Big Day in the Slam Book II [Carl Leonard ] Big Day In the Slam Book III [Carl Leonard ] Big Day in the Slam Book IV [Carl Leonard ] Re: Scoliosis, Chiropractic, and Science [Dawn Hromanik ] Re: Scoliosis, Chiropractic, and Science [Dawn Hromanik ] Scientific Scoliosis List [M44C@aol.com] Re: Providence brace ["Berbrich" ] to peggy ["Berbrich" ] Re: Copes Brace & Austin ["Berbrich" ] Re: crankshaft ["Berbrich" ] ---------------------------------------------------------------------- From: Albrecht Marignoni Date: Thu, 27 Nov 1997 09:43:25 +0100 Subject: Question Hey All, do you wear your brace 23 houres per day, or how often do you realy wear your brace ? I have to wear my brace 23 hours per day, but when I go swimming or to a disco I do not wear my brace. But I have not a good feeling to offence against the prescribtion of my doctor. What are you doing ? Albrecht Marignoni ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Kathy Stott Date: Thu, 27 Nov 1997 08:57:23 -0800 Subject: Re: G G wrote: > To Carl Leonard - I really want to read your message, it looks very > interesting but I can't because the text keeps going all the way to > the > ... To G;I have the same problem in reading that message as well as the messages from Kelly, I will tell you what I do, I am not very computer literate but I discovered if you pretend like your going to reply to that specific message (Reply to Sender) the body of the text where it shows the senders message puts it in a format you can read without having to scroll to the right to read it. Hope that makes sense, it involves a few extra clicks on the mouse, but it actually is a whole lot faster to read this way. Kathy Stott > ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Patty Aguila" Date: Thu, 27 Nov 1997 10:45:21 -0500 Subject: Re: Copes Daniel: Have you any suggestions on how to do the program locally? You see, I told Dr. Copes that I would travel to Louisiana every 3-4 months. This is so because the Copes-trained chiro in upstate New York didn't follow the procedures he was supposed to, so they had to teach me everything from scratch. I would rather get his opinion on my progress than someone who is "Copes-Trained" (which frankly, didn't seem like much to me as far as the upstate NY doctor was concerned). I disagree with Dr. Copes in that I believe taking x-rays every 3-4 months is detrimental to my health. His office says its no big deal. I don't want to do it but how do I know how my back is responding to the treatment (i.e., how many degrees better, etc.) For example, the air bladders, is there any way to fill them locally -- I find having to send the brace back is a nuisance -- any suggestions? Also, I read that you take the brace off for one hour to get ready (after you wake up) for the day and then wear it until you get the full 18 hours. Is it not possible to take it off for the six hours in the morning and then wear it later? I'm asking you this because I want to know if that makes sense to you. I figure 18 hours is 18 hours and that I would break it up as I saw fit but maybe it would be detrimental to the program. Thanks Daniel. I'm sorry for hassling you with these questions. Take care. Patty Gore - ---------- > From: brotschul_d@DD.PALMER.EDU > To: scoliosis@ai.mit.edu > Subject: Copes > ... work > in my case, period. However, I am turned off by Dr. Copes' commercially > based and infomercial-esque presentation what he does. I also feel that > his services probably cost more than they should. I question if it is > ... he > employs. Perhaps people could mimic the program elsewhere on their own. > > I am inclined to feel this way because I am hearing more about > ... procedure. > When we arrived at his office, we were informed a regretful office worker > that we were denied by our insurance carrier. Much to their surprise, my > mother said that it was okay, and she would just pay the $10,000 in cash. > ... threw > a tantrum and slammed the door as he left the room we were in, and his > assistant was left to apologize on his behalf. > > ... > Copes. > > Having said all of that, I still agree with the scientific rationale > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Patty Aguila" Date: Thu, 27 Nov 1997 10:47:46 -0500 Subject: Re: I'm thankful for... Melanie: Please keep us posted on the Providence brace. What can you tell me about it? Patty Gore - ---------- > From: Berbrich > To: scoliosis@ai.mit.edu > Subject: I'm thankful for... > ... just > won't settle for anything until I am happy. Even after I have Copes he > hasn't stoped, and has found the Providence brace. He has seen how > diffucult this has been for me, which has made it diffucult for him. He > ... fix > me the easiest way for me that he can find-no matter what the cost. He has > bought plane tickets for my birthday to get a counseltation and casting for > the Providence brace-which is only worn at night. He has not gotten upset > with me when I have slacked off, but has only tried to understand the > problem. I am very lucky to have such a deticated and loving father. > Always trying hard, never giving up, always putting me first, and always > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Cntry6978@aol.com Date: Thu, 27 Nov 1997 10:57:34 -0500 (EST) Subject: Re: Funny e-mail Pip somehow I did not get a copy of the funny email,,,could u send it please? thanks,,,,,laurie For help on using this list (especially unsubscribing), send a message to "scoliosis-teens-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Patty Aguila" Date: Thu, 27 Nov 1997 10:59:13 -0500 Subject: Re: Surgery patients G: On what basis does Prudential refuse to pay for your brace? Is durable medical equipment covered in your contract? Patty - ---------- > From: G > To: scoliosis@ai.mit.edu > Subject: Surgery patients > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Joe Smith" Date: Thu, 27 Nov 1997 11:46:19 -0500 Subject: Re: Copes I would like to know the same thing about doing the majority of the Copes locally too. Rebecca Smith - -----Original Message----- From: Patty Aguila To: scoliosis@ai.mit.edu Date: Thursday, November 27, 1997 11:30 AM Subject: Re: Copes > >Daniel: > > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Sag230@aol.com Date: Thu, 27 Nov 1997 12:17:58 -0500 (EST) Subject: My daughter Hello, I am new to the list. I have a 12 year old daughter recently diagnosed with scoliosis. In June 97 she had an X-ray following a school check that was suspicious. Her curve was 17 degress right thoracic and 15 degrees left lumbar. Observation was recommended. Recently, on follow-up, her thoracic was "between 20 and 27, and her lumbar has also increased proportionally". She is 5'2", 85#, tall and lean. She is Risser Class 0, and has not started her period yet. She has no symptoms at all, and cosmetically, it is barely noticeable. Her orthopedist reccommended a visit to a Pediatric Orthopedist that specializes in scoliosis for consideration of bracing. Her mother and I are VERY much against surgery, even though we both are medical professionals. We are hoping to find advice that will help us to optimize her bracing, as we feel it is our best hope. Any advice appreciated! Thank you. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: MsMtrMaid@aol.com Date: Thu, 27 Nov 1997 12:51:28 -0500 (EST) Subject: Re: Funny e-mail Good luck Pip! :-) For help on using this list (especially unsubscribing), send a message to "scoliosis-teens-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: G Date: Thu, 06 Sep 1956 13:42:51 +0000 Subject: Re: G Thanks Kathy, good idea! Kathy Stott wrote: > > G wrote: > > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Berbrich" Date: Thu, 27 Nov 1997 13:32:47 -0800 Subject: Re: Question > Hey All, > > do you wear your brace 23 houres per day, or how often do you realy wear > ... Albercht, For the Copes brace, you wear it for 18 hours a day. The Provience brace is worn only whan you sleep. 23 hours must be really annoying to say the least! Which brace to you have again? *Melanie Berbrich* ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Berbrich" Date: Thu, 27 Nov 1997 13:54:11 -0800 Subject: all about the Prividence brace Patty and everyone, There is even a newer brace out there that was origionally designed for kids that have not yet stopped growing. It is called the Providence Brace, out of Rhode Island Hospital. There have been a few people who are done growing that have tried it. Unfortunally, I don't know their outcome. They thought the only treatment for adults was surgery, but of course, they were wrong. My dad and I are flying out to Kansas City Dec 4-5 to get a counseltation and hopefully I will get casted and start this one. I will be sure to keep everyone posted. The great things about it are that it is only a brace that the you sleep in, and no expensive ongoing chiropractic treatments are needed, no rigorous exercises and food supplements, it was designed by orthopedists, and they are actually doing ongoing patient studies to prove the brace, and it only costs about $1500. The total costs of the Copes treatment program is $15000 to $20000. They had a really good idea: When you are being casted, they lie/lay you on your back, and push your spine totally straight, and cast you like that. With Copes, you aren't straight when you wear the brace, you are just straighter than you are on your own. I thought that was such a good idea! My dad has met a chiropractor Dr. Vasques, whose 17 year old daughter (supposedly done growing also) was not helped by the Copes brace-let's just say she was a 'bit' of a slacker. He put her in the Provicence brace, and she is reportedly doing very well. You may contact Dr. Vasques at 816-228-2273. If you are interested in persuing this brace, contact Dr. Barry Mcoy at 401-444-5477, eastern time. I'm sure he would send you some of the info he sent me and know of a Dr. in you area to get you started. My curves improved while I competed in gymnastics, but took a bad turn this past year. I went from curves of approximately 25 degrees to curves of 38 degrees. That is when my dad really started looking for something. At first, he was truned down by this one because I've had many people tell me that I have stopped growing. So we got the Copes brace. It is really too early to tell if it has helped, and e knows how much I hate wearing it to school, so we are hopefully going to do both. I want to work something out like Prov. brace at night, then get a break for school, then do Copes when I get home. Good luck, *Melanie Berbrich* ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Berbrich" Date: Thu, 27 Nov 1997 14:06:13 -0800 Subject: Re: Copes .... Perhaps people could mimic the program elsewhere on their own.. Daniel, This totally caught me by surprise!!! I knew he was kind of strange, but his actions seen very inmature-this coming from a 17 year old! And as for the clipping, I do have my dad push on my back as my ciro does. I know it isn't really mimicing the brace, but more the treatment. Good Luck and happy turkey day! *Melanie Berbrich* ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Peggy Date: Thu, 27 Nov 1997 17:39:49 -0800 Subject: Re: all about the Prividence brace Melanie, The providence brace sounds interesting, I am glad you are still continuing the exercises and nutrition though, because I am convinced our bodies are not just mechanical things that you can just push into the right position and then expect them to stay there without developing healthy strong system of muscles to support the new correct position. Good luck, keep us posted. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: korey Date: Thu, 27 Nov 1997 14:06:38 +0000 Subject: Re: Parents of kids w/ Congenital Scoliosis My son is 27 months old and has infantile idiopathic scoliosis. In October of this year he had an MRI done, as recommeded by his physician. We were quite nervous, as he had to be put under general anethesia, but everything went smoothly. I can understand your hesitation about the anethesia. But because of the detail seen in the MRI study, we can now rest at ease that there is nothing going on with his spine or his brain that we could not see in an x-ray. Although we still don't know what is causing his scoliosis to progress, we were relieved that they did not find anything abnormal. The whole procedure took about 2 1/2 hours. We also managed to arrange to have his casting done for his brace while he was under anethesia, as we figured he would not be thrilled by a plaster cast being taken of his body and then sawed off while he was awake. He woke up quickly after the procedure was done and went home as if he had just taken a long and restful nap. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Rufus Brown Date: Thu, 27 Nov 1997 20:55:01 Subject: New Medical Digest "Rules" I think Daniel Brotschul has set forth some intelligent, refreshingly mature comments regarding the "rules" regarding the new medical digest. I support his open-minded approach regarding "unproven medical procedures" and believe him to be a real asset to either digest. I commend him for his comments and support his opinions! By the way, I am a scientist, employed in the field of research, and know that every "proven" medical procedure in place today started out as a hypothesis/idea.....call it what you desire. As Rodney King said, "Can't we all just get along?" Cathy with a "C" :-) ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Carl Leonard Date: Thu, 27 Nov 1997 18:45:33 -0800 Subject: Big Day in the Slam Book II Sorry, folks. The massive missive I sent a few days ago, Big Day in the Slam Book", got truncated. So here it is again, this time in two parts. I'll try to be less wordy next time. Remember the scene in Amadeus, where the Austrian King told Mozart that his composition "had too many notes. Leave out a few." Wolfie's response was "Which notes would you have me leave out, Sire?" It's a quandary.... When I was in Jr. High School, "Slam Books" were a big thing. A slam book was a notebook with a bunch of numbered questions in the beginning. Everyone who was allowed to participate was also assigned a number. The notebook was passed around from participant to participant (surreptitiously, since the school didn't allow them). Each numbered question had a page (or several pages) dedicated to it. To add your $0.02 worth, you'd find the appropriate question page, write in your number, and your pithy remarks. They were called Slam Books because they tended to be full of catty remarks ("Slams"). We didn't often cure hunger or ensure world peace. There are days when this list reminds me of Slam Books. Yes, this proves that when I was young, the pencil had already been invented. But that's not why I called (Seattle-area in-joke). RE: what to wear under a brace. Our daughter, Linnane wore a tight-fitting cotton Tee (Hanes, Fruit-of-the-Loom, etc.). Tighter is better, to eliminate wrinkles, which become uncomfortable. RE: how the Copes brace looks under clothes. Only barely noticeable, if you know to look, and what to look for. Even in her small school (400 or so high scholars), very few people had a clue. She even challenged people to punch her in the stomach RE: Dr. Vasquez & Copes. There was a time when Vasquez actively promoted the Copes system, and his daughter used it. Copes and Vasquez had a falling-out - there are rumors of countersuits flying around - and Vasquez switched his daughter to the Providence Brace. Being associated with both parties, I've heard both sides, and don't care to get involved. Suffice it to say that Copes' position is that if it appears that the system isn't working, then the problem is the patient's fault. Strip away the hugginess and you find someone who is very defensive. RE: More on Copes & Vasquez. After 16 or so months, we have terminated Linnane's use of the Copes system. Was it successful? The measurements of spinal curves are very imprecise. Allowing for +/- 5^ in the measurements (most providers agreed on that margin of error), she either improved slightly or stayed stable. After 6 months of no brace, we will re-evaluate, and decide whether to fit a new brace, consider surgery, or play ostrich. Why did it not succeed like Copes said it would? Lack of support. Our local chiro was somewhat trained by a Copes-trained chiro (Vasquez, again). We found Copes to be difficult to deal with, and Vasquez bailed out. So the brace never got proper [ "proper" being the key word ]adjustments. I do not fault Copes or his system for these problems. It wasn't working for us to deal with someone 200 miles away, particularly when we didn't find him to be helpful. Linnane still gets weekly (not 3x weekly) chiro adjustments; these bring relief. Still is very active (ballet and modern dance). RE: Electro stim machines. We didn't buy, we rented. From Dr. Ray Vasquez (same one, see above). It was $100 per month, and Blue Shield paid $70 per month (because he was an out-of-state provider). That -and 10 chiro visits - are the only parts of the Copes system that our insurer (Blue Shield of Washington) covered. Carl Change is inevitable, except from vending machines ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Carl Leonard Date: Thu, 27 Nov 1997 19:06:27 -0800 Subject: Big Day in the Slam Book II [PART 1 of 3] Sorry, folks. The massive missive I sent a few days ago, "Big Day in the Slam Book", got truncated. So here it is again, this time in three parts. I'll try to be less wordy next time. I am reminded of the scene in Amadeus, where the Austrian King told Mozart that his composition "had too many notes. Leave out a few." Wolfie's response was "Which notes would you have me leave out, Sire?" It's a quandary.... RE: what to wear under a brace. Our daughter, Linnane wore a tight-fitting cotton Tee (Hanes, Fruit-of-the-Loom, etc.). Tighter is better, to eliminate wrinkles, which become uncomfortable. RE: how the Copes brace looks under clothes. Only barely noticeable, if you know to look, and what to look for. Even in her small school (400 or so high scholars), very few people had a clue. She even challenged people to punch her in the stomach RE: Dr. Vasquez & Copes. There was a time when Vasquez actively promoted the Copes system, and his daughter used it. Copes and Vasquez had a falling-out - there are rumors of countersuits flying around - and Vasquez switched his daughter to the Providence Brace. Being associated with both parties, I've heard both sides, and don't care to get involved. Suffice it to say that Copes' position is that if it appears that the system isn't working, then the problem is the patient's fault. Strip away the hugginess and you find someone who is very defensive. RE: More on Copes & Vasquez. After 16 or so months, we have terminated Linnane's use of the Copes system. Was it successful? The measurements of spinal curves are very imprecise. Allowing for +/- 5^ in the measurements (most doctors agreed on that margin of error), she either improved slightly or stayed stable. After 6 months of no brace, we will re-evaluate, and decide whether to fit a new brace, consider surgery, or play ostrich. Why did it not succeed like Copes said it would? My opinion is LACK OF SUPPORT. Our local chiro was somewhat trained by a Copes-trained chiro (Vasquez, again). We found Copes to be difficult to deal with, and Vasquez bailed out. So the brace never got proper [ "proper" being the key word ] adjustments. I do not fault Copes or his system for these problems. It wasn't working for us to deal with someone 2000 miles away, particularly when we didn't find him to be helpful. Linnane still gets weekly (not 3x weekly) chiro adjustments; these bring relief. And she still is very active (ballet and modern dance). Carl Change is inevitable, except from vending machines ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Carl Leonard Date: Thu, 27 Nov 1997 19:07:59 -0800 Subject: Big Day In the Slam Book III [PART 2 of 3] RE: Electro stim machines. We didn't buy, we rented...from Dr. Ray Vasquez (same one, see above). It was $100 per month, and Blue Shield paid $70 per month (because he was an out-of-state provider - they would pay 100% is he was a local "Participating Provider"). That - and 10 chiro visits per year - are the only parts of the Copes system that our insurer (Blue Shield of Washington) covered. PS: non-funding by insurance is, IMHO - another instance of lack of support from the folks in Louisiana. RE: Richard Lethin's question "What will they call idiopathic scoliosis after they find the gene?" "Cured" or "Minor Annoyance" Carl Mencken's Law: No one ever went broke underestimating the taste of the American public. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Carl Leonard Date: Thu, 27 Nov 1997 19:08:15 -0800 Subject: Big Day in the Slam Book IV [Part 3 of 3] Clarification: I am annoyed that medical professionals have not been as thorough as I would like them to be. This is a problem for me because I'm not satisfied with the cop-out that the term "idiopathic" allows. They won't find a cause if they don't ask the right questions. But I don't begrudge doctors the incomes that they make I don't question their dedication to helping people. I have found all of them to be genuinely interested in doing the best that they knew to do for Linnane. Some are more limited in their abilities than others [understatement] None is truly Holistic - not one of them has addressed the whole patient and the patient's history and environment as a complete, integrated entity. Each is looking at a little piece and drawing a big conclusion, like the story of the blind men and the elephant. It brings to mind the old saw that is listed under my signature. Carl When the only tool you have is a hammer, everything looks like a nail. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Dawn Hromanik Date: Tue, 11 Nov 1997 01:49:56 -0600 Subject: Re: Scoliosis, Chiropractic, and Science > >My stance on chiropractic as it relates to scoliosis is this... >Chiropractic, to my knowledge, has never been shown in any scientific > ... This is what my chiro's feelings were too. Scoliosis could not be corrected, but the secondary effects, like back aches, headaches etc.. could be lessened. I can definately feel in my neck when a vertebrae is "out of whack" It hurts to the touch, and the pain will shoot down my arm if I press on the right spot. I was hesitant to go to a chiro, but ended up there is desparation, no one else with traditional medicine could help me. It would take a very desparate move for me to switch chiro's there are so many out there that think they can fix anything! One day 1/2 of my face was tingly, he didn't even want to touch me but sent me to a neurologist. I was impressed. Dawn ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Dawn Hromanik Date: Tue, 11 Nov 1997 01:49:53 -0600 Subject: Re: Doctors Methods At 03:20 PM 11/26/97 -0500, Joe Smith wrote: > >So when a doctor says that it doesn't change,what should I tell them? >Rebecca I really don't know, my experience, limited as it is, ...is that 99% of these doctors have never had scoliosis. My back hurt yesterday, in fact I had an x-rays yesterday due to pneumonia I had 2 weeks ago. I could tell just by looking at the picture that it was over 25 degrees. Just by runing my fingers down my back I could tell it was more than usual. That night I took a nice long hot bath with baking soda (a tip I read here, 1st time I tried it) I felt so much better, this morning my back doesn't ache and running my fingers down my back I can tell a difference. I kinda think it is the muscles that get "stressed" and spasm...don't know. Dawn ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Dawn Hromanik Date: Tue, 11 Nov 1997 01:50:18 -0600 Subject: Re: Scoliosis, Chiropractic, and Science At 04:19 PM 11/26/97 -0500, Michelle Ewing wrote: > > From a practical point of >view, many of us don't have the time to read every post. I had 44 from > ... I agree, I'm new to this list, but I'm subscribed to 3 lists and mail management takes a long time. One list that I would like to get on is too vague and genertaes over 100 messages a day. I'm an Agriculture major, but within that discipline is agronomy, animal science, food production, and ag education. One "list" would be impossible. Dawn ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Abby (and James) Althoff" Date: Thu, 27 Nov 1997 20:39:41 -0800 Subject: Providence brace I would really like to hear from those who are investigating the Providence brace. Can you tell us more about it? How does it differ from Copes? Do you still have to do all the other things with it? Is it for adults too? Thanks....abby* ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: M44C@aol.com Date: Thu, 27 Nov 1997 23:56:13 -0500 (EST) Subject: Scientific Scoliosis List The following is the message I sent but was somehow lost. I had to retype it. Dear Richard and Linda, I would like for you to respond to the folowing questions... On the new list, will I be permitted by the editorial review board to mention bracing, traction, electrical stimulation, exercise, skin care, and breathing exercises as acceptable treatment for scoliosis? They are mentioned as such on page 1727 of the 18th edition of Taber's Cyclopedic Medical Dictionary, published in 1997 and edited by Clayton L. Thomas, MD, MPH, Director Emeritus of Medical Affairs at Tambrands Inc. May I also make references to osteopathy? It is mentioned on page 1368 of the above mentioned book as a "recognized system of medical and surgical care" in which "manipulation is the primary method used to restore stuctural and functional ballance". It is interesting that these are mentioned in a current medical reference, because it sounds remarkably similar to the treatment I recieved, and it happened to work in my case. May I mention manipulative therapy at all? May I mention articles that come from The Journal of Manipulative Medicine, The Journal of the American Osteopathic Association, and The Journal of the Canadian Chiropractic Association? These are all current peer-reviewed scientific resources with a broad spectrum of contributing medical experts. If The Journal of the American Medical Association ever makes reference to manipulative medicine, may I mention it on the new list, or will I be permanently banned? Will Richard be permitted to champion gene therapy as a potential treatment for scoliosis? It has never been attempeted, and certainly not proven. What can we determine has been proven about scoliosis surgery? Has it been proven that there are usually complications? Has it been proven that subsequent surgeries are often necessary? Has it been proven that postoperative patients generally suffer from a lifetime of pain? I am certainly not about to suggest that scoliosis surgery is not very neseccary in many cases. It has improved the quality of life for many people that would have otherwise been crippled. I would, however, hypothesize that some forms of intervention might offer an alternative with a more favorble outcome. If I do that with a sound scientific rationale behind it, I should not be met with censorship. When Richard discusses genetic engineering, he is hypothesizing about the science behind a unproven method. I should be able to do the same. In addition to the ones mentioned earlier, I have regular access to many respected scientific journals. Among them are The Journal of Musculoskeletal Medicine, The Journal of Neurophysiology, The Journal of Musculoskeletal Pain, The Journal of Back and Musculoskeletal Rehabilitaion, The Journal of Biomechanics, The Journal of Applied Nutrition, and The Journal of Isokinetics and Exercise Science, just to name a few. All of these journals make reference to the forms of therapy I have mentioned in this message. They all fall within the confines of the western model of modern medical science. Linda has been appointed the sole mediator for the new site. If I ever mention a topic that does not fall within the narrow confines of what she has taken upon herself to deem "proven", will I be banned from the list? What if I can cite a scientic study to validate my statements? Will I have to do this every time I make a statement? Will every person who contributes be held to this same level of scrutiny? If the type of input that I am suggesting is excluded, the new list should not be designated as "scientific" or even "medical" in nature as Linda has suggested. Based on what seems to be the proposed criteria, it should be designated as the "surgical and pharmacological (with a touch of genetic speculation) scoliosis list". Such a list should not claim to be scientific, and it should not slight any other more broad-based list. Keep in mind that although I am being critical to make a point, it is not my aim to be personally insulting. Let's all work together to find as many answers as we can about scoliosis. Let's do it in a open, rational, and scientific way that does not cater to anyone's personal agenda. We should do what we can to give the public all of the useful information they can utilize in making meaningful and unbiased decisions about obtaing safe treatment. Daniel Brotschul ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Berbrich" Date: Thu, 27 Nov 1997 21:22:04 -0800 Subject: Re: Providence brace > I would really like to hear from those who are investigating the Providence > brace. Can you tell us more about it? How does it differ from Copes? Do you > still have to do all the other things with it? Is it for adults too? > Thanks....abby* There is even a newer brace out there that was origionally designed for kids that have not yet stopped growing. It is called the Providence Brace, out of Rhode Island Hospital. There have been a few people who are done growing that have tried it. Unfortunally, I don't know their outcome. The people who made the Prov. brace thought the only treatment for adults was surgery, but of course, they were wrong. My dad and I are flying out to Kansas City Dec 4-5 to get a counseltation and hopefully I will get casted and start this one. I will be sure to keep everyone posted. The great things about it are that it is only a brace that the you sleep in, and no expensive ongoing chiropractic treatments are needed, no rigorous exercises and food supplements, it was designed by orthopedists, and they are actually doing ongoing patient studies to prove the brace, and it only costs about $1500. The total costs of the Copes treatment program is $15000 to $20000. They had a really good idea: When you are being casted, they lie/lay you on your back, and push your spine totally straight, and cast you like that. With Copes, you aren't straight when you wear the brace, you are just straighter than you are on your own. I thought that was such a good idea! My dad has met a chiropractor Dr. Vasques, whose 17 year old daughter (supposedly done growing also) was not helped by the Copes brace-let's just say she was a 'bit' of a slacker. He put her in the Provicence brace, and she is reportedly doing very well. You may contact Dr. Vasques at 816-228-2273. If you are interested in persuing this brace, contact Dr. Barry Mcoy at 401-444-5477, eastern time. I'm sure he would send you some of the info he sent me and know of a Dr. in you area to get you started. My curves improved while I competed in gymnastics, but took a bad turn this past year. I went from curves of approximately 25 degrees to curves of 38 degrees. That is when my dad really started looking for something. At first, he was truned down by this one because I've had many people tell me that I have stopped growing. So we got the Copes brace. It is really too early to tell if it has helped, and e knows how much I hate wearing it to school, so we are hopefully going to do both. I want to work something out like Prov. brace at night, then get a break for school, then do Copes when I get home. Good luck, *Melanie Berbrich* ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Berbrich" Date: Thu, 27 Nov 1997 21:32:25 -0800 Subject: to peggy I kinda blew up, huh? I don't think he saw the post, so let's not tell him-tee hee. It just kind of caught me by surprize because I had no idea what he was doing. It turns out that he is really trying to make it easier for me and getting me in the Prov. brace would be great. Did you read: I'm thankful for... He hasn't seen it yet, and I'm sure he will get all emotional on me. He's a great guy! *Melanie Berbrich* ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Berbrich" Date: Thu, 27 Nov 1997 21:35:52 -0800 Subject: Re: Copes Brace & Austin There is even a newer brace out there that was origionally designed for kids that have not yet stopped growing. It is called the Providence Brace, out of Rhode Island Hospital. There have been a few people who are done growing that have tried it. Unfortunally, I don't know their outcome. They thought the only treatment for adults was surgery, but of course, they were wrong. My dad and I are flying out to Kansas City Dec 4-5 to get a counseltation and hopefully I will get casted and start this one. I will be sure to keep everyone posted. The great things about it are that it is only a brace that the you sleep in, and no expensive ongoing chiropractic treatments are needed, no rigorous exercises and food supplements, it was designed by orthopedists, and they are actually doing ongoing patient studies to prove the brace, and it only costs about $1500. The total costs of the Copes treatment program is $15000 to $20000. They had a really good idea: When you are being casted, they lie/lay you on your back, and push your spine totally straight, and cast you like that.. With Copes, you aren't straight when you wear the brace, you are just straighter than you are on your own. I thought that was such a good idea! My dad has met a chiropractor Dr. Vasques, whose 17 year old daughter (supposedly done growing also) was not helped by the Copes brace-let's just say she was a 'bit' of a slacker. He put her in the Provicence brace, and she is reportedly doing very well. You may contact Dr. Vasques at 816-228-2273.. If you are interested in persuing this brace, contact Dr. Barry Mcoy at 401-444-5477, eastern time. I'm sure he would send you some of the info he sent me and know of a Dr. in you area to get you started.. I just want you to know about every alternative! Good luck, *Melanie Berbrich* ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Berbrich" Date: Thu, 27 Nov 1997 21:40:46 -0800 Subject: Re: crankshaft > My daughter went to her doctor for a visit. My daughters curves have > increased slightly. 20/17 to 23/20. Basically the same. However the > doctor mentioned possibility of a beginning crankshaft. What is that. My > ... I carry around a heavy bookbag too, and I can totally feel it compressing my spine. If I don't have on my brace(copes), I have backpains all day! I wish I could leave my books in my classrooms. I'll have to ask my teachers, but That is a great idea! *Melanie Berbrich* ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ End of scoliosis V1 #655 ************************ The scoliosis-digest is a daily encapsulation of messages sent to BOTH the scoliosis and scoliosis-teens mailing lists. You can determine which list a message above was posted to by looking at the message footer. For help on using the scoliosis-digest, (especially unsubscribing) send an electronic mail message to "scoliosis-digest-request@ai.mit.edu" with one line of text: "help". To post your own message to the scoliosis, send an electronic mail message to "scoliosis@ai.mit.edu". To post your message to scoliosis-teens, send it to "scoliosis-teens@ai.mit.edu". Also, see the scoliosis web page at "http://www.ai.mit.edu/scoliosis/scoliosis.html".