From: bounce-scoliosis To: scoliosis-digest@ai.mit.edu Subject: scoliosis V1 #653 Reply-To: Errors-To: bounce-scoliosis Precedence: bulk scoliosis Wednesday, 26 November 1997 Volume 01 : Number 653 Today's subjects for scoliosis and scoliosis-teens: Re: coxsackie virus [susan holt ] Re: Doctor's methods [susan holt ] Fwd: Re: Copes Brace & Austin [Jeff Fremder ] New List [Momble@aol.com] Re: Natalie [susan holt ] Re: Julie, Peggy [pjjj4@cvn.net (pjjj4)] Re: CLOTHES UNDER BRACE [Paul Callahan ] [Fwd: BOUNCE scoliosis-medical@ai.mit.edu: Non-member submission from [FLC047@aol.com]] [] Researchers [Richard Lethin ] Re: Natalie [Peggy ] Re: New Scientific Scoliosis List [brotschul_d@DD.PALMER.EDU] Re: New Scientific Scoliosis List [brotschul_d@DD.PALMER.EDU] RE: Hello There! [Thomas & Kelley Moore ] Re: New Scientific Scoliosis List [Peggy ] Coxsackie Virus [Carl Leonard ] New List [Thomas & Kelley Moore ] RE: Doctors Methods [Thomas & Kelley Moore ] Re: Samantha, age 13 [Becky Thomas ] Fwd: Facet injections vs. epidurals [FLC047@aol.com] My daughter's surgery ["St. Gelais, Jeffery" ] This & That [EarthLady3@aol.com] Re: Funny e-mail [MsMtrMaid@aol.com] Re: Doctors Methods ["Joe Smith" ] Re: New List ["Joe Smith" ] Re: Copes Scoliosis Brace ["Patty Aguila" ] Re: Julie, Peggy ["Joe Smith" ] Re: Intro ["Patty Aguila" ] Re: the tone ["Patty Aguila" ] Re: Copes Scoliosis Brace ["Joe Smith" ] Re: Doctor's methods [Dawn Hromanik ] Re: Fwd: Dawn Hromanik-my story [Dawn Hromanik ] RE: Hello There! [Margaret Arth ] Re: Funny e-mail [Feb2001@aol.com] All about Copes! ["Berbrich" ] Re: Natalie ["Berbrich" ] read this (esp. my dad) ["Berbrich" ] brotschul... ["Berbrich" ] Re: This & That ["Berbrich" ] Re: read this (esp. my dad) [Peggy ] ---------------------------------------------------------------------- From: susan holt Date: Tue, 25 Nov 1997 07:22:03 -0800 Subject: Re: coxsackie virus My daughters friend had a coxackie, I believe. She developed a bent coccix (sp). My daughter has scoliosis and had a few bouts of high temperatures but wasn't diagnosed with coxackie. What are the symptoms? Susan Carl Leonard wrote: > > A while back, someone started a discussion about a possible connection between Coxsackie Virus and idiopathic scoliosis. That's interesting to us, because our daughter had Coxsackie, and now has scoliosis. I'd like to re-open this discussion and see where it goes. > > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: susan holt Date: Tue, 25 Nov 1997 07:27:09 -0800 Subject: Re: Doctor's methods Go, Carl, go! I'm with you all the way. It's outrageous that this disease can not be cured in less gross ways then surgery. Susan Carl Leonard wrote: > > Since our daughter's scoliosis was first detected (by a layperson, not by an officially-certified doctor), she has seen several degreed, licensed, whatevered medical people - including > * 2 (count 'em 2) SRS card-carrying orthopedists (MDs with offices in high-rise buildings) > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Jeff Fremder Date: Tue, 25 Nov 1997 04:42:30 -0800 (PST) Subject: Fwd: Re: Copes Brace & Austin - ---Peggy wrote: > > Jeff Fremder wrote: > > > ... and a > > 62 degree thorasic curve on a six year old... > > > I apologize if someone has already asked you this, but has Austin had an > MRI to rule out spinal cord problems? Does he have hemi-vertebra? > > My daughter Natalie is 6 and has been in the Copes program for a year. > ... with a > 40 degree curve. > > Often when scoliosis develops as young as with your son there is either > cord problems or mal formed vertebra. If surgery for scoliosis is > performed on a child with cord problems before the cord problems are > resolved the results can be devestating. > ... been > asked the question before. I have been off the list a while with > Natalies surgery and may have missed this info. > > ... Thank you for your advice Peggy. Austin had surgery to release a tethered spinal cord at age three. He has had several MRI's but non e for the last three or four years. (He's almost seven) He also had surgery to repair a congenital heart defect at age 2. I feel both of these conditions and/or surgeries has played a part in the development of his scoliosis... Questions/Comments are welcome... __________________________________________________________________ Sent by Yahoo! Mail. Get your free e-mail at http://mail.yahoo.com ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Momble@aol.com Date: Tue, 25 Nov 1997 08:25:11 -0500 (EST) Subject: New List Evidently aol has screwed up again. I am missing a post about/from Linda Racine and a new list. If someone could send me a copy I would be ever so greatfull. Happy Thanksgiving to all. Momble ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: susan holt Date: Tue, 25 Nov 1997 09:26:03 -0800 Subject: Re: Natalie My daughter had a rash all over her back after surgery that drove her crazy. It was an allergy to the tape. The only thing that cooled it right down was Lavender oil. The cortisone cream only inflamed it and made it hotter. A friend recommended the oil and it worked. Susan > ______ > For help on using this list (especially unsubscribing), send a message > to "scoliosis-request@ai.mit.edu" with one line of text: "help". ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: pjjj4@cvn.net (pjjj4) Date: Tue, 25 Nov 1997 09:39:36 -0500 Subject: Re: Julie, Peggy - -----Original Message----- From: Carmell Burns To: scoliosis@ai.mit.edu Date: Monday, November 24, 1997 10:45 PM Subject: Julie, Peggy > >I sent a message yesterday but did not see it on the list. I hope I am >not repeating myself. > ... Carmell- No-I don't have an auto sig.-I just make a lot of typing errors! :) As to why I can't unsubscribe-its a mystery. I'm not new to this majordomo stuff and have had no previous problems getting on or off things. Thanks for the suggestion. I'm only trying to switch to the digest-not get off the list. Julie S. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Paul Callahan Date: Tue, 25 Nov 1997 08:50:33 -0800 Subject: Re: CLOTHES UNDER BRACE squishy@KingCon.com wrote: > > DOES ANYONE HAVE ANY INSIGHT AS TO WHETHER WEARING > YOUR PANTS ON THE OUTSIDE VS. UNDERNEATH YOUR BRACE > ... under the Boston brace. I would have two concerns. 1. The brace schould fit as tightly as possible. If you wear clothing under it, it will not fit as well and you won't get as good a correction. 2. My eight year old also wears a Boston brace and even her underwear leaves an awfully deep, red, sore impression on her skin after a couple of hours. We are going to have her wear underpants over her brace. Awkward perhaps, but less painful. 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: Richard Lethin Date: Tue, 25 Nov 1997 10:19:25 -0500 Subject: [Fwd: BOUNCE scoliosis-medical@ai.mit.edu: Non-member submission from [FLC047@aol.com]] This is a multi-part message in MIME format. - --------------D8D8EBF97B38B9BD0210AE8F Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit - --------------D8D8EBF97B38B9BD0210AE8F Content-Type: message/rfc822 Content-Transfer-Encoding: 7bit Content-Disposition: inline Return-Path: Received: from mail3.new-york.net (root@mail3.new-york.net [165.254.2.58]) by deer-park.etcons.com (8.8.5/8.8.5) with ESMTP id EAA02584 for ; Tue, 25 Nov 1997 04:22:40 -0500 (EST) Received: from life.ai.mit.edu (life.ai.mit.edu [128.52.32.80]) by mail3.new-york.net (8.8.8/8.8.8/NYNET-2.2-NORELAY) with ESMTP id EAA06859 for ; Tue, 25 Nov 1997 04:06:18 -0500 (EST) Received: (from daemon@localhost) by life.ai.mit.edu (8.8.5/AI1.15/ai.master.life:1.18) id EAA20802; Tue, 25 Nov 1997 04:04:29 -0500 (EST) Date: Tue, 25 Nov 1997 04:04:29 -0500 (EST) Message-Id: <199711250904.EAA20802@life.ai.mit.edu> To: owner-scoliosis@ai.mit.edu From: bounce-scoliosis@ai.mit.edu Subject: BOUNCE scoliosis-medical@ai.mit.edu: Non-member submission from [FLC047@aol.com] >From owner-scoliosis@life.ai.mit.edu Tue Nov 25 04:04:26 1997 Received: from mrin54.mail.aol.com (mrin54.mx.aol.com [198.81.19.164]) by life.ai.mit.edu (8.8.5/AI1.15/ai.master.life:1.18) with ESMTP id EAA20794 for ; Tue, 25 Nov 1997 04:04:25 -0500 (EST) From: FLC047@aol.com Received: (from root@localhost) by mrin54.mail.aol.com (8.8.5/8.7.3/AOL-2.0.0) id EAA23381 for scoliosis-medical@ai.mit.edu; Tue, 25 Nov 1997 04:03:54 -0500 (EST) Date: Tue, 25 Nov 1997 04:03:54 -0500 (EST) Message-ID: <971125040353_77944718@mrin54.mail.aol.com> To: scoliosis-medical@ai.mit.edu Subject: Fwd: Facet injections vs. epidurals - --------------------- Forwarded message: Subj: Facet injections vs. epidurals Date: 97-11-22 18:59:59 EST From: FLC047 To: scoliosis@ai.mit.edu Could someone please tell me the difference between a facet injection and an epidural/caudal injection? And how many of these injections can a person have without negative effects? Also, has anyone here had a discogram, and has anyone had one done by Dr. Derby, from Daly City, California? Thanks, in advance, for your help. Nora - FLC047@aol.com - --------------D8D8EBF97B38B9BD0210AE8F-- ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Richard Lethin Date: Tue, 25 Nov 1997 10:28:11 -0500 Subject: Researchers Hi Carl, "Idiopathic scoliosis" has a genetic cause (though there may be others). Scientists haven't located the specific genes yet but there are some researchers working on it. They're very interested in getting blood samples from patients and their family when there is evidence that scoliosis runs in the family. Call 1-800-NSF-MYBACK for more information and to volunteer. Please report back to the list what you find. What will they call idiopathic scoliosis after they find the gene? Richard ______ 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: Tue, 25 Nov 1997 10:55:27 -0800 Subject: Re: Natalie susan holt wrote: > The only thing that cooled it > right down was Lavender oil. Thanks Susan, Her rash has almost completely faded now, but I'll keep that in mind for possible remedy in the future. Peggy ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: brotschul_d@DD.PALMER.EDU Date: Tue, 25 Nov 1997 09:56:31 -0500 (CDT) Subject: Re: New Scientific Scoliosis List Hi everyone, Last night, I posted a message meant for Linda and Richard to respond to. It was regarding the medically documented validity of bracing, exercise, electrical stimulation, and manipulative therapy as treatment for scoliosis. Did anyone receive it? I'm not sure if I sent it properly because I did not receive it back. If not, can somebody let me know so I can re-post it? 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: brotschul_d@DD.PALMER.EDU Date: Tue, 25 Nov 1997 10:24:39 -0500 (CDT) Subject: Re: New Scientific Scoliosis List Linda, Since you will be serving as the moderator, what will be the specific editorial criteria for the new list? 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: Thomas & Kelley Moore Date: Tue, 25 Nov 1997 08:39:05 -0800 Subject: RE: Hello There! Dear Megan, I have that hip, low back and leg thing, too. I had my spine fused 12 years ago and I've been dealing with this pain for about 7 years now. What surgery is it that your doctors are proposing if you've already been successfully fused? Do you have Flat-back Syndrome? That would explain your apparent increase in kyphosis. Are you bent forward a lot? Did you have bone taken from your iliac crest (hip) for your fusion? I often wonder if that doesn't have something to do with the hip pain. I think the pain shooting down your leg might have something to do with your ruptured discs. I have Degenerative Disc Disease and I think that's what causes mine. Well, let us know what you find out. I think there are a few of us on this list with the same problem. Best of luck! Kelley ______ 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: Tue, 25 Nov 1997 13:01:30 -0800 Subject: Re: New Scientific Scoliosis List Daniel, I didn't get it. Peggy ______ 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: Tue, 25 Nov 1997 09:56:03 -0800 Subject: Coxsackie Virus Searching the Web using Alta-Vista http://www.altavista.digital.com/ on +"coxsackie virus", I found the following information on Coxsackie Virus. There were a total of 450 "hits" . Symptoms .Fever .Sore throat .Blisters or ulcers in the throat and mouth .Headache .A rash with blisters on hands, feet and diaper area .Loss of appetite Symptoms http://thestar.com.my/archives/infolib/coxfact.html (US Mirror for Malaysian Health Ministry) The virus that attacks muscle most aggressively is probably coxsackie virus. Ed Friedlander, M.D., Pathologist erf@alum.uhs.edu http://worldmall.com/erf/lectures/infect.htm (MD:Northwestern Med School & Chairman-Pathology Department: University of Health Sciences) Is there some point to this? Possibly. There is a tiny bit of anecdotal evidence, hinted at right here on this esteemed list, that there might be a connection between Coxsackie infections and scoliosis. If anyone out there can add to the discussion, we may be on to something. If not, it'll die here, and soon. Is there a connection between muscle degeneration and scoliosis? Dampyno. But if the muscles on one side of the spine are weakened, could the stronger muscles on the other side pull the spine into a curve? Carl Frisbeetarianism n.: The belief that when you die, your soul goes up on the roof and gets stuck. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Thomas & Kelley Moore Date: Tue, 25 Nov 1997 09:26:38 -0800 Subject: New List Rich, Well, I've been biting my fingers for the last few days while reading about this new list. I must say, I'm not surprised that Linda wanted to start something like this. It is a safe environment for someone who does not want to deal with opposing opinions. It's frustrating to me being on the "digest" version, because I can see all of the posts made on all of the lists, but they cannot see my comments unless they are subscribed to the regular list. I am happy to read that most people think it's not necessary to have this "medical" list. I think that not only is it not necessary, but it could also be very misleading to would be subscribers that do not understand that the participants on the list are not medical people giving the advice. I think you should seriously consider a "tagline" for this "medical" list stating that the people posting there are not medical professionals and are only posting their opinions and personal interpretations of the alleged "proven" techniques, treatments and quoted studies regarding Scoliosis. Is each statement made on the "medical" list going to have to be verified by naming the printed source of the "proven" information? If not, how are you going to go about determining whether or not it is "proven"? Sounds like a potential quagmire, to me. I'm staying tuned in...this should make for some interesting reading! Kelley P.S. Linda...can you see me? ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Thomas & Kelley Moore Date: Tue, 25 Nov 1997 10:02:50 -0800 Subject: RE: Doctors Methods Dear Carl, I feel the same way you do about doctors compiling the medical history of Scoliosis patients. Someone mentioned here a while back that such a form exists with SRS doctors. I just saw my SRS doctor and he did not offer me any such form to fill out, otherwise I would have gladly done so. I just think there is no real collective passion out there in the medical community to figure out "Idiopathic" Scoliosis. There has been some statements made about Orthopaedic Surgeons wanting to do surgery on their patients because "that's how they make their money". NEWSFLASH: Bracing is where the big bucks are! Think about it, the patient has more follow-up visits over a span of a few years while in a brace than if they opt for surgery. And, chances are, they can still nab them for surgery even after the bracing. If they found a cause for Idiopathic Scoliosis then bracing would not be necessary anymore. That's a whole lot of bucks down the drain for Orthopedists and Orthotists. And since the inception of the Copes Foundation, you can add Chiropractors to that list. I say the whole darn Hippocratic Oath needs to be re-written. When's the last time you read it? There needs to be a clause about insurance. I think most doctors regard it as a sort of ceremonial tradition rather than taking to heart the actual contents of the oath. There are probably a select few who are true caring medical professionals, but even they are subject to corruption by greed of money. I must say that the only doctors I have ever seen that didn't care about my insurance status and were really concerned with MY well being were the military doctors that I've seen over the years. They were not guided by the almighty dollar, because they got paid the same amount either way. Didn't mean to get off on a tangent there, sorry. Carl, you hit the nail on the head, guy, we need MORE RESEARCH! Now, how are we going to do that and keep these doctors living in the conditions to which they have become accustomed? Kelley ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Becky Thomas Date: Tue, 25 Nov 1997 10:32:55 -0600 Subject: Re: Samantha, age 13 Amanda Morotti wrote: > > Within the past month my daughter was diognosed with Scoliosis. > > ... Dear Amanda, Take a deep breath!!!You, your daughter and family will survive scoliosis. It's a wrinkle in life but there is so much worse! My daughter Lauren was diagnosed at age 12. She had a 33/28 curve. She went from wearing a TLSO to wearing a milwaukee brace for 24 hours per day. She is 15 now and only wears her brace at night. Her curve is at 38/25 and seems to be staying there. We originally went to UCSF for treatment but were not happy with the prognosis(wanted rods inserted) We found Dr. Tolo at LA Children's and are so pleased! He is wonderful, definately worth the trip. We went to Meir Schieder at the Center for Self-Healing in SF to learn exercises to help her back and ease the occaisional pain. She had a massage weekly by a woman who trained with Meir. This might sound a little out there but it worked. Lauren created this treatment program and so was committed to it. Her friends also became part of this journey. They helped put her brace on and off at school, picked things up for her, tied shoes etc. At such a critical age, it's important to have peer support. They all signed the TLSO when it was retired. Lord knows it wasn't easy but it's a challenge that can be met and conquered. People aren't perfect and there are many learning opportunities that seemed to come with scoliosis. Best of luck and feel free to email Lauren ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: FLC047@aol.com Date: Tue, 25 Nov 1997 14:26:39 -0500 (EST) Subject: Fwd: Facet injections vs. epidurals - --------------------- Forwarded message: Subj: Facet injections vs. epidurals Date: 97-11-22 18:59:59 EST From: FLC047 To: scoliosis@ai.mit.edu Could someone please tell me the difference between a facet injection and an epidural/caudal injection? And how many of these injections can a person have without negative effects? Also, has anyone here had a discogram, and has anyone had one done by Dr. Derby, from Daly City, California? Thanks, in advance, for your help. Nora - FLC047@aol.com ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "St. Gelais, Jeffery" Date: Tue, 25 Nov 1997 12:05:26 -0800 Subject: My daughter's surgery Tiffany, age 10, is doing great! They sectioned her filum terminale a week ago. It definitely was tethered. The neuro said that it was much thicker than normal, so it was being restricted within the spine. When it was severed it sprung up, which verifies the tethering. She hasn't had any neurological problems as a result of the surgery. It was a difficult time waiting through the surgery, but I could sense the many people praying for us. We had a peace and confidence that only God could provide. I can't thank you enough for those that prayed. We have yet to find out whether my daughter's surgery will help her scoliosis. She has a wedged vertebra as well. Jeff St.Gelais 3991 Bow Road Victoria, BC, Canada V8N 3B2 Phone: (250) 477-7793 Email: Jeffery.StGelais@gems2.gov.bc.ca ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: susan holt Date: Tue, 25 Nov 1997 15:20:47 -0800 Subject: Re: New Scientific Scoliosis List Daniel, I didn't get it Susan > > Hi everyone, > > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: EarthLady3@aol.com Date: Tue, 25 Nov 1997 16:37:27 -0500 (EST) Subject: This & That RICH: Smilin' anarchist here. ;) Will the medical-only list also be included on the digest version? I was thinking that it may get a little long that way, especially with some of the folks posting the same thing to both lists. MELANIE: Good to see you back! JIM (Melanie's Father): Do you know the details behind why Dr. Vasques 17-year old daughter did not have success with the Copes brace? Was it a matter of her not wearing it the required amount of time? Also, if you (or anyone else) have any reports on adults who did not have success, I'd be interested. Thank you. (by the way, you have a *great* daughter - but you already knew that) DR. DEAN: <> Oops, pardon me for a moment while I go cover my ignorance. I always get those two confused - so melatonin is what some people take to sleep better at night right? PATTY: <> Unless I can get as many opinions that the Copes brace *doesn't* work (from actual adults who have tried) as I have from those who have/are using it with success - I'm pretty sure I'll give Copes a try. There's just too much to lose (for me personally) going the surgery route right now. Have you gotten your brace back yet with the air bladders inserted? WEARING CLOTHES INSIDE BRACE: Wouldn't it interfere with the effectiveness of the brace if a thick piece of material was placed underneath - especially if it wasn't evenly distributed? (i.e. the pants and not the shirt) Just a thought. PEGGY: *Terrific* news about Natalie - keeping good wishes going for her during her recovery! And btw, *loved* the internet-lightbulb-funny! PIP & Funny Email: It was me who sent the "Ad Campaigns Gone Wrong" post - and I sent it again to your personal email. Let me know if it doesn't arrive. LEX: << Did you get my funny virus thing?>> No, I didn't Lex - did you send it to me personally? (EarthLady3@aol.com) Don't forget the "3" at the end of EarthLady - lots of folks do. And you know what? - us 'old fogeys' can learn a lot from you 'younguns' about tolerance and acceptance of others. *Happy Thansgiving* Everyone! EarthLady3@aol.com (but I kinda feel sorry for the turkeys. . .) ______ 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: Tue, 25 Nov 1997 18:34:24 -0500 (EST) Subject: Re: Funny e-mail Oh if anyone can find it I'd really love it tooo! I never got it! :-) Danielle MsMtrMaid@aol.com 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: "Joe Smith" Date: Tue, 25 Nov 1997 18:15:08 -0500 Subject: Re: Doctors Methods I am new to the list, so I need to put in my input with this letter.I don't care what everyone talks about, proven or unproven,just as long as it is about scoliosis.That is why I joined the list.I have had scoliosis since I was about 12 years old and nothing was done about it then.Since then,I have seen orthopedists, a chiropractor,physical therapists,and an osteopath.Everyone of them have a different view about what should or shouldn't be done.Also, I have never had 2 providers give me the same degree of curvature. The only way to decide what my next type of treatment will be is to now talk to people that battle the everyday pain and restrictions on life that scoliosis causes.They are the ones that truly understand what is going on and then is it for me to take an objective and subjective look at my options.Now, here's the kicker...I am in the Air Force.When the initial xrays were taken in 1994 (21 years old), the orthopedist said the curve was at 18 degrees.The maz curve for the military is 20, so they let me in.Well,now my back is killing me and I have seen several different Air Force providers in the past year.The curve degrees measured from 10 degrees (Jan 97,23 years old) to 34 degrees (Oct 97,24 years old).Who do I believe?I just keep getting sent to Physical Therapy and getting steroid shots.I haven't had good experiences so far with my case and military doctors.None of them want to say that there is a problem and that they don't know what to do.So I have to suffer in the mean time.Well, I will choose my next treatment using the information gathered from people on this list and other research on the net in the library.I am contemplating Copes.Anything will help more than doing nothing at all.I enjoy reading this list very much and hate to see the stupid bickering about nothing.I just want to learn new information. Thanks for reading my babble!!! Rebecca A. Smith - -----Original Message----- From: Thomas & Kelley Moore To: 'Scoliosis@ai.mit.edu' Date: Tuesday, November 25, 1997 2:49 PM Subject: RE: Doctors Methods > >Dear Carl, > > ... Scoliosis patients. Someone mentioned here a while back that such a form exists with SRS doctors. I just saw my SRS doctor and he did not offer me any such form to fill out, otherwise I would have gladly done so. >I just think there is no real collective passion out there in the medical community to figure out "Idiopathic" Scoliosis. >There has been some statements made about Orthopaedic Surgeons wanting to do surgery on their patients because "that's how they make their money". NEWSFLASH: Bracing is where the big bucks are! Think about it, the patient has more follow-up visits over a span of a few years while in a brace than if they opt for surgery. And, chances are, they can still nab them for surgery even after the bracing. If they found a cause for Idiopathic Scoliosis then bracing would not be necessary anymore. That's a whole lot of bucks down the drain for Orthopedists and Orthotists. And since the inception of the Copes Foundation, you can add Chiropractors to that list. >I say the whole darn Hippocratic Oath needs to be re-written. When's the last time you read it? There needs to be a clause about insurance. I think most doctors regard it as a sort of ceremonial tradition rather than taking to heart the actual contents of the oath. >There are probably a select few who are true caring medical professionals, but even they are subject to corruption by greed of money. I must say that the only doctors I have ever seen that didn't care about my insurance status and were really concerned with MY well being were the military doctors that I've seen over the years. They were not guided by the almighty dollar, because they got paid the same amount either way. >Didn't mean to get off on a tangent there, sorry. Carl, you hit the nail on the head, guy, we need MORE RESEARCH! Now, how are we going to do that and keep these doctors living in the conditions to which they have become accustomed? > >Kelley > > ... ______ 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: Tue, 25 Nov 1997 18:18:24 -0500 Subject: Re: New List Finally!A person with a head on their shoulders!!! - -----Original Message----- From: Thomas & Kelley Moore To: 'Scoliosis@ai.mit.edu' Date: Tuesday, November 25, 1997 1:44 PM Subject: New List > >Rich, >Well, I've been biting my fingers for the last few days while reading about this new list. I must say, I'm not surprised that Linda wanted to start something like this. It is a safe environment for someone who does not want to deal with opposing opinions. >It's frustrating to me being on the "digest" version, because I can see all of the posts made on all of the lists, but they cannot see my comments unless they are subscribed to the regular list. >I am happy to read that most people think it's not necessary to have this "medical" list. I think that not only is it not necessary, but it could also be very misleading to would be subscribers that do not understand that the participants on the list are not medical people giving the advice. >I think you should seriously consider a "tagline" for this "medical" list stating that the people posting there are not medical professionals and are only posting their opinions and personal interpretations of the alleged "proven" techniques, treatments and quoted studies regarding Scoliosis. >Is each statement made on the "medical" list going to have to be verified by naming the printed source of the "proven" information? If not, how are you going to go about determining whether or not it is "proven"? Sounds like a potential quagmire, to me. >I'm staying tuned in...this should make for some interesting reading! > >Kelley > ... ______ 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: Tue, 25 Nov 1997 18:48:09 -0500 Subject: Re: Copes Scoliosis Brace Rebecca: I am on the Copes program. There is a whole process to the Copes system. Why don't you call them at 1-800-726-8869 and get them to send you some literature and a video about it. Certainly if you have any questions you can write to the list, we are all here to help and support each other but I found the video helpful in that I saw to some extent what would be involved. I was impressed by the fact that the brace looked nothing like the Milwaukee brace that I wore when I was younger. A lot of my friends say it doesn't even show. Anyway, any questions, please feel free to ask. Patty Gore - ---------- > From: Joe Smith > To: scoliosis@ai.mit.edu > Subject: Copes Scoliosis Brace > ... know > more info about it. > Rebecca > > ... ______ 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: Tue, 25 Nov 1997 19:06:51 -0500 Subject: Re: Julie, Peggy What kind of success have you had with Copes??I am the same in making my choice.I wouldn't use one piece of information to make such an important choice.I am just looking for different information that is from prople who have or haven't had success with certain treatments. Rebecca A. Smith - -----Original Message----- From: Peggy To: scoliosis@ai.mit.edu Date: Tuesday, November 25, 1997 12:24 AM Subject: Re: Julie, Peggy > >Please accept our wishes for a >> continued recovery for Natalie. > ... ______ 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: Tue, 25 Nov 1997 19:04:29 -0500 Subject: Re: Intro Albrecht: I suppose we all have some pretty nasty experiences with scoliosis. I wore a brace during a very difficult time in my life I was 13. I wore it for 3 years and many people stared at me. At that time I couldn't wear the clothes I wanted and my father reminded me of something when I complained about the brace I wear now -- he said "remember how you used to eat with the Milwaukee brace? You have to bring the spoon all the way up because your neck wouldn't bend." Don't feel discouraged by other people and scoliosis. Everyone is curious about something different. Tell them about it and them move ahead with the conversation -- let them know more about you as a person. Don't allow others to make you feel negative about yourself. Patty - ---------- > From: Albrecht Marignoni > To: scoliosis@ai.mit.edu > Subject: Intro > ... ______ 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: Tue, 25 Nov 1997 19:21:13 -0500 Subject: Re: the tone I agree the "tone" did have some animosity. I personally don't like conventional treatments for anything, THAT IS MY CHOICE. Believe me, I RESPECT those that do. Everybody has a "body" to take care of. We all have a brain that decides what's best for that body. We don't all think alike, Thank God!! Patty - ---------- > From: Abby (and James) Althoff > To: scoliosis@ai.mit.edu > Subject: the tone > ... of > you guys must be pretty anal..... Now there has to be a separate list for > only medical things that are proven? I think the whole idea of a post like > this is to share ideas, concerns, and hope. Why does there have to be such > antagonism? If you hear about something and want to try it.....then you > can. If it doesn't seem like something that will work for you....then pass > it by. It's enough that we are all battling this disease .....we shouldn't > have to battle each other. I, for one, enjoy reading about how other people > have coped with and handled their situations. It makes me feel less alone. > My heart goes out to every post I read ....especially those involving very > young children. I haven't been on this list very long and rarely > write....but the tone of the post that said " you will be immediately > banned from participating in the new list in any way" really didn't sit > ... clearly > there is a whole lot of animosity out there....... and I'm sure I'll hear > some of it directed at me now!......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: "Joe Smith" Date: Tue, 25 Nov 1997 19:51:05 -0500 Subject: Re: Copes Scoliosis Brace Patty,Thank you very much.I will call them tomorrow.Everything seems so abstract right now and I think the video may be the right thing to see now. Rebecca A. Smith - -----Original Message----- From: Patty Aguila To: scoliosis@ai.mit.edu Date: Tuesday, November 25, 1997 7:25 PM Subject: Re: Copes Scoliosis Brace > >Rebecca: > > ... ______ 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: Mon, 10 Nov 1997 07:36:29 -0600 Subject: Re: Doctor's methods At 10:55 AM 11/24/97 -0800, Carl Leonard wrote: > But no one put the whole patient history together and looked for a pattern. > When I first went into the Childrens hospital for my first checkup they asked my Mom TONS of questions!!! This was of course eons ago,...17 years ago=:) Since I was adopted at 6 months of age my Mom didn't didn't know alot of the answers. ie:1st held my head up, sat up, rolled over etc.. they also asked alot of family health history that we didn't know. You'd think that after they were told once we didn't know any of that they would just put unknown in all the "slots", nope, they just kept asking. >So here's the question: does anyone know of a researcher who is interested in gathering data about idiopathic scoliosis patients? If the information is all in one place, there may be a way to find causes (and cures). > If you hear of a database somewhere let me 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: Mon, 10 Nov 1997 07:36:33 -0600 Subject: Re: Fwd: Dawn Hromanik-my story At 11:16 PM 11/21/97 -0500, CGSNC@aol.com wrote: > > >--------------------- > ... I wonder if it has something to do with our hips separating and getting softer during childbirth. Then again whenever I mention it to my peditrician (seems like that is my regular doctor to, it's who I see the most=:)) he always mentions, "Look at who you are carrying on your hip..." > Which I only loss because of stress. Know that feeling... > Now it will only do it if I get impatient and start moving furniture without help. You do that too huh=:) I have the harrington rod with >fusion. Yes, you can tell that I have scoliosis because you can see the hump >and shoulders not alligned. Anyway, even with the rod I tilt to the said and >walk bent over to relieve the pain. How severe was your curve? I only had the brace. What have your doctors said about your "tilt"? Do they take it seriously? I've only been in twice when it is actually "out" and all they do is prescribe muscle relaxants that make me fall asleep. Right, a mother of 3 and I'm going to sleep during the day=:0 >Like you, only two days bedrest does any good. If I feel like it is "going out" I will sometimes try ice packs. Sometimes it works other times not. >Thanks for writing because I actually thought it was only me. Sorry it took me so long, I'm still new to the internet and I have a tendency to be long winded with my responses=:) I like to take my time when I "talk" to someone. Look forward to talking to ya later. Have a great Thanksgiving. 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: Margaret Arth Date: Tue, 25 Nov 1997 20:54:46 -0500 (EST) Subject: RE: Hello There! Kelley, You're right. I do have a flattened thoracic spine and I usually am bending forward when I sit. I also have the degenerating discs, that's probably why it ruptured. Even though the 1st surgery was partially successful, the surgeon knows that my nerves are being severely compressed and that the kyphosis is progressing. The rod is also broken in two places (that area is really painful, even to the touch). So he wants to take out the broken hardware and put in sturdier instrumentation. Next time I see him I'll ask what kind. He will make sure there is no pseudoarthrosis of the old fusion (they did the bone graft out of a rib not the hip). He will take out the ruptured discs and fuse it to the original fusion. I believe he will also try to shift my spine to the center of my pelvis as well as straighten it. I will be asking a lot of questions the next time I see him. Although I would never wish this kind of pain on anyone (of course), it's kind of nice knowing that I'm not the only one experiencing it. I hope that doesn't sound sadistic, but I'm sure you know what I mean. - --Megan ma247@columbia.edu "Life is just one non-sequitor after a fishtank." ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Feb2001@aol.com Date: Tue, 25 Nov 1997 21:15:32 -0500 (EST) Subject: Re: Funny e-mail when you get that list of campaings in different languages...can you forward it to me also. i must have read over it and deleted it. thanks danielle ______ 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: Tue, 25 Nov 1997 19:34:23 -0800 Subject: All about Copes! To Christina and anyone who may want to know about Copes: Hope you have plenty of time to read this! Dr. Copes has developed a plan to attack scoliosis from all aspects. His website is: www.scoliosis.com He treats everything wrong with you. Here is what I have to do every day and why: EVERY DAY 1. Dietary supplements-about 3 times a day w/ each meal. You get tested to see which nutrients you are lacking, and this will get the patient strong and healthy. 2. Wearing the Copes brace for 18 hours a day. The Copes brace is custom made to fit each patients body. It is plastic with foam paddind in the inside. It has three clips in the back, and it fits from the upper hips to the shoulders with a hole in the chest area. The first day you get it, you wear it for 1 hour, then the second day, 2 hours... Eventually you are up to 18. You are supposed to wear it when you sleep, because when your muscles are relaxed, your spine is more flexible and willing to be pushed by the air pockets you get about 4 weeks into wearing the brace. The air pannels push in the correct spots , and are reinflated every 6 weeks. 3. Daily exersixes are done to strengthen muscles, and get you more comfortable with the brace. You switch every other day with exersize video tape one and two. This only takes about 20 minuites. 4. Water therapy is my favroite part! This can be done every or every other day. You fill up the tub with warm-hot water, and 1 tbs of backing soda and soak for 10-20 minuites. This takes the lactic acid out of your muscles whish relieves sore muscles (for anyone really) and allows them to heal better after exersizing. 5. Cliff board. This is a plastic hump that you lie-lay on each curve of your back(I have 2) that pushes your spine back to straight. Each spot is for about 15 minuites, and is best done when you first wake up in the morning. EVERY OTHER DAY 6. Electric muscle stimulation can be done with your ciropractor's $1,200.00 unit, or you can purchase your oun unit for anout $600.00. We chose to buy our own, because we live about 40 minuites from my ciro. You get an EMG (I forget what this stands for, but they test your back muscles to see which ones need to be stronger to help pull the curve back the correct way). EMS is fun-it electrically zaps your muscles-it is a funny tingling feeling, but I got used to it rather quickly, and I do it when I watch tv. 7. Ok, this one is pretty hard to explain-there is a lot of things going on when you do this. My ciro calls it cardiovascular-ostibluar-something-or-other, but I call it the stair-stepper. With your brace on, you have your head being pulled up by a pulley with a bad of 8lb of water on the other side. You also have this 5lb weight hanging around your neck like a necklace. You get on the stepper-climber, and walk while you swing your arms naturally and focus on vertical lines that I had to draw on a poster board. OK! Having your head pulled up by the water bag is streaching out your spine, and relieving pressure on your neck. The 5lb weight necklace is to put that natural curve back in the neck that most scoliosis patients have lost. You look at vertical lines because you are subconciously training your brain to think straight. Having scoliosis, your brain doesn't see a problem, so only training your spine to be straight is one thing, but your brain has to know what to do. 2-3 TIMES PER WEEK 8. Ciropractic adjustments!! Hopefully, there is a trained ciro in your area (for us, we had to move from MI so we decided if we had to move, we were going to like it, so here we are in southern Cali!). He/she is trained by Copes to push in the correct spots and he cracks your back, and you leave feeling as smooth as a race horse. Oh, before you get adjusted, you lay (or is it lie?) on your stomash with your brace on, and they hook you up to (drums please)...the streacher. We make jokes that it looks more like a torture machine, but it is made to streach the spine out-it isn't so bad. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Here is some more info: -If there is any sopt on the brace that is causing you discomfort, the Copes people will adjust it for you. They really want this to work, and won't let anything go unattended to. -You really can't see the brace under the clothes, but people aften notice how stiff I look. -I will probably grow about 1-2 inches taller by the time I'm finished with the Copes treatment program. -The Copes plan will last about 2-3 years for me, then I will go into a retainer brace which I will wear at night. Ummmmm... There is a ton more, but that's all I can think of. It does take up a lot of time, but it is the best alternative to surgery. I can do the program, and I have a ton of other things going on in my life right now like: Gymnastics coaching, I'm a senior in high school, I'm the Photo-editor for the school paper, I'm involved with Associated School Body (ASB), I'm taking classes at night to get into the Entertainment Industry, I have time to write in this website, I go out with friends, and I do get about 7 hours of sleep at night! I hope I've been helpful, and would reccomend talking to Dr. Copes himself. The number is (504) 292-4333. His main office is in Baotn Rouge, Louisana. Please keep us posted on your decisions! Best of 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: Tue, 25 Nov 1997 19:38:52 -0800 Subject: Re: Natalie > Dear Peggy - > > I am so pleased to hear that Natalie is doing great. It must be a huge > ... update > on how she is doing. Good luck for her recovery.. > > Pip Sorry to butt in, but Natalie is still pretty far from being "okay now" She still has the Copes treatment to undergo! But Peggy-I'm glad the surgery went well! *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: Tue, 25 Nov 1997 19:49:39 -0800 Subject: read this (esp. my dad) > Nancy, > > My daughter has been in the Copes brace for a couple of months. I don't > ... hords > of nutrients and twice a week chiro visits are hard to comply with. As a > result, I am going to attempt to get her fitted for a new brace that sounds > very promising, especially for younger children that are still growing. > The following is a form letter that I send out occasionally for information > purposes. I hope you find it helpful. Good luck, > > Jim..... Dad. What the heck are you talking about? I'll admit to being frusterated, and it is overwelming, but why would we stop so soon? I hardly think we have the money to do this...why didn't you tell me about this? Talk to me, or do I have to find out things like this from the list? You aren't even home enough to know if I wear it or not, and I usually do the right amount by the way. I've been feeling down from not getting messages, and have a bit of a cold. But no excuses-right. Whatever-you try thi thing! *Mel* ______ 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: Tue, 25 Nov 1997 20:18:04 -0800 Subject: brotschul... > Hi everyone, > > Last night, I posted a message meant for Linda and Richard to respond to. > It was regarding the medically documented validity of bracing, exercise, > electrical stimulation, and manipulative therapy as treatment for > scoliosis. Did anyone receive it? I'm not sure if I sent it properly > ... I'll chect for you, but what was the title? That makes it easier to look up. *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: Tue, 25 Nov 1997 20:33:59 -0800 Subject: Re: This & That I love you earthlady! I have someone you can e-mail that is older and I tried to find what she wrote to me, but I couldn't find it, but here is her e-mail: ms972@bard.edu *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: Tue, 25 Nov 1997 23:42:28 -0800 Subject: Re: read this (esp. my dad) Berbrich wrote: > > > Nancy, > > > ... Mel You are so sweet, and it is good to see other families don't communicate that well either. I have a 14 year old as well as Natalie and this post made my day. We are all the same, don't be too hard on Dad. ______ 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 #653 ************************ 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".