From: bounce-scoliosis To: scoliosis-digest@ai.mit.edu Subject: scoliosis V1 #1269 Reply-To: Errors-To: bounce-scoliosis Precedence: bulk scoliosis Friday, 30 July 1999 Volume 01 : Number 1269 Today's subjects for scoliosis, scoliosis-medical, scoliosis-child and scoliosis-teens: First time patients for Dr. B. [BGallen778@aol.com] Re: 2nd opinion [J R ] Re: my story (and questions) ["Sandy Morey" ] Re: what should a fusion feal like? [DOlsen2174@aol.com] Re: Good News [Silberkrmf@aol.com] Re: New Brace [Linda Riley ] Re: Lori's comment about height gain ["George Luker" ] Re: Doctors appointment [Bizkit2985@aol.com] [none] [st_boatright@tarleton.edu] rib hump: what, when where etc. [Sarah Campbell ] [none] [Kate Hauer ] Re: Lori's comment about height gain [Lori ] Re: rib hump: what, when where etc. [Buterrflii@aol.com] Re: rib hump: what, when where etc. [NBiagini@aol.com] Using new SpineCor dynamic brace from Biorthex ["Michael L Gordon" ] Using new SpineCor dynamic brace from Biorthex ["Michael L Gordon" ] Re: Audrey's reply [AirMort@aol.com] Advice/Diagnoses [Linda Racine ] AMA or CHIROPRACTIC CARE [Ed & Krisite Hodas ] Re: AMA or CHIROPRACTIC CARE [Linda Racine ] Re: my story (and questions) ["Georgina Van Horn" ] Re: Good News [Your Name ] Re: AMA or CHIROPRACTIC CARE [CRBwow@aol.com] Re: Using new SpineCor dynamic brace from Biorthex [Your Name ] post fusion decompensation & kyphosis [Alyssa ] Re: Revision Surgeons ["Joseph Boatman" ] Re: Revision Surgeons [Linda Racine ] Re: AMA or CHIROPRACTIC CARE [Linda Racine ] Tracking a New Brace Solution-Still(progress report and request for assistance) [] ---------------------------------------------------------------------- From: BGallen778@aol.com Date: Thu, 29 Jul 1999 01:04:09 EDT Subject: First time patients for Dr. B. Diane, Thanks for the correction. (You are the third person to do it!!!) Best to you, Barbara ______ 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: J R Date: Thu, 29 Jul 1999 07:21:56 -0700 (PDT) Subject: Re: 2nd opinion To Linda (and all): Thanks for your concern. I do feel pretty confortable with the surgeon, and after checking out some web pages & x-rays, I'm pretty certain that his measurements are right. But, as I still have a few weeks to change my mind, I will do some more hw. I have requested more information from his nurse and phone numbers of other adults that have had scoliosis surgery by him. The office should call me today w/that info. For the group: I live near West Palm Beach, Florida. My current Dr.'s are Higgins, Clay Baynham, and Brett Baynham. If anyone has heard of them, or others in the area, let me know. Thanks for your help, Jill - --- Linda Racine wrote: > > Hi Jill (JR)... > > I think that explains it. I'm glad you plan on > getting other opinions. > > In what area of the country are you? If you post > that info, you'll > probably get some input from people in your area. > > Regards, > Linda > > > > ______ > For help on using this list (especially > unsubscribing), send a message > to "scoliosis-medical-request@ai.mit.edu" with one > line of text: "help". > _____________________________________________________________ Do You Yahoo!? Free instant messaging and more at http://messenger.yahoo.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: "Sandy Morey" Date: Thu, 29 Jul 1999 07:29:58 PDT Subject: Re: my story (and questions) Jo, Thanks so much for your endearing letter. As you know, I need all the support possible at this moment. I think possibly the time leading up to the surgery is one of the hardest. However, I am hanging in there and feel it is in God's hands at point (and Dr.LaGrone's). He has really been comforting on the phone. I have talked to him twice with many questions and he has been great. Jo, thanks for all your words of advice over the past few months and your overall support. I appreciate your offer to come to Amarillo, however, I think I will be okay. Ed will be there along with my daughters, so we will be fine. If you do decide to come there for your check-up, please come see me. I would love to see you. It sounds like you are doing great. I am so happy for you. When all of this is over, I still want to get together. Thanks again for your offer. You are special. Love, Sandy >From: Jo MacAleese >Reply-To: scoliosis-medical@ai.mit.edu >To: scoliosis-medical@ai.mit.edu > ... _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.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: DOlsen2174@aol.com Date: Thu, 29 Jul 1999 12:43:03 EDT Subject: Re: what should a fusion feal like? I had a fusion last year (at age 37)...what would you like to know? If you have any questions I'll be glad to answer. As far as what a fusion feels like, I'm not sure what you're getting at, exactly...Right after the surgery I felt like HELL and was in a lot of pain for about 3 weeks...but it gets better. A year later, I can't feel any pain and can't tell the fusion is there. Any more questions, ask away! Also if you have any questions about donating blood for your surgery, check out the AABB's website,or, if you live in the NY area, the NYBC has a site. (New York Blood Center) ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Silberkrmf@aol.com Date: Thu, 29 Jul 1999 13:06:04 EDT Subject: Re: Good News Dear Jackie, How is Sam doing. I told you things just move along after the initial shock. Since I haven't seen you write too often, I hope everything is o.K. Let me know. Thank you for your words. Sincerely, Karen ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Linda Riley Date: Thu, 29 Jul 1999 13:46:21 -0400 Subject: Re: New Brace There is a Dr. Peter Pizzutillo at St. Christopher's Hospital for Children in Philadelphia. Could this be the same person? c j day wrote: > Dear patient and impatient patients!(and their families), > By the time this makes the list I'm sure someone has tracked > these rumors down. My wife saw a short medical news flash(that she just > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "George Luker" Date: Thu, 29 Jul 1999 10:49:49 -0700 Subject: Re: Lori's comment about height gain Hello Linda R, Barbara, Lori, et al I think inserting bone disks is only done on the lower lumbar vertebra to give structural support. In Linda L's cases only L4-5 and L5-S1 had bone disks. The rest of the disc spaces were packed with morselized bone material. During the posterior corrective surgery, the vertebra were spread apart using reverse plier and affixed to the rods with either wires or clamps. Lori, ask you surgeon specifically what height you shouold expect tol gain. Remember, it will be an estimate so don't bank on it. Linda L. gained 1 1/2" with a 15 level fusion from the pelvis. The main determiner was the amount of the curves. Hers were 56 Lumbar and 41 Thoracic. Just for fun, take a piece of flexible hose or wire, form it over your posterior standing xray dwon the center of the spine, measure the distance from top to bottom in a straight line, then straighten the wire and remeasure it. This will give you a rough idea of the height difference and illustrate why height is gained. :-) Did you get the article describing 'long fusion techiques' that Georgina offered? Good article describing the whole process. Warm regards, George and Linda - ----- Original Message ----- From: Linda Racine To: Sent: Wednesday, July 28, 1999 10:00 PM Subject: Re: Lori's comment about height gain > > Hi Barbara... > > ... ______ 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: Bizkit2985@aol.com Date: Thu, 29 Jul 1999 11:07:32 EDT Subject: Re: Doctors appointment Rachael- We had to take x-rays and let the doctor look at you, not much really..I didn't meet many people there... -Tyler 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: st_boatright@tarleton.edu Date: Thu, 29 Jul 1999 13:33:26 -0500 (CDT) Subject: [none] Hello, I'm new to this. I was diagnosed with scoliosis last year at the age of 20. My curve was at 40 degrees. From the things I've read 40 degrees is kind of a gray area as to have surgery or not. My doctor said that we should wait 1 year and see if the curve worsens. If it has worsened she said we would probably have to do surgery. My appointment is for AUG. 13th. I'm really scared of the thought of surgery. My doctor is in Austin, TX. Her name is Dr. Laura Flawn (or it may be spelled Flaun). Has anybody heard anything about her? Or do you have any suggestions for a doctor in or around the Austin area? I would really appreciate it. Thanks, Shara ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Sarah Campbell Date: Thu, 29 Jul 1999 15:45:51 -0400 (EDT) Subject: rib hump: what, when where etc. Thanks everybody for all the civil replies to my decidedly uncivil last post! Is it ok to get chiropractic adjustments when you have a fusion? The more I think about it, the more it seems like something that would break up the fusion. Another question: What's a rib hump? I've read about them here and elsehwere. What do they look/fell like, and what causes them? I'm afraid I might be developing one. My left shoulder has always been a bit forward of the other one, and when I feel the ribs below it, they seem to be poking out a bit. I've occasionally had burning pain under the shoulder blade, whch has become much more frequent since I did a Pilates exercise of lying on tennis balls I saw a lady in church once that had a small hump, about the size of a small nerf football, on just one side of her back. is that a rib hump? Cheers, SArah ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Kate Hauer Date: Thu, 29 Jul 1999 14:59:00 -0500 Subject: [none] Hi Shara, I live in Austin, Texas, also and have been going to Dr. Laura Flawn for check ups every five years, just to see if my fusion is ok. I had a 38 degree curve and had surgery in 1980 in Milwaukee, WI. I was having pain associated with the curve and that is why surgery was chosen. She is an SRS doctor, so I'm sure she has a lot of experience with scolisosis. Do you have any pain? Do you do any kind of exercise, like yoga, for your back? I teach yoga in town and am interested in helping people with scoliosis. kate ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Lori Date: Thu, 29 Jul 1999 13:27:24 -0500 Subject: Re: Lori's comment about height gain At 10:49 AM 7/29/99 -0700, George wrote: >Lori, ask you surgeon specifically what height you shouold expect tol gain. George, I did ask him. It was he who said I wouldn't gain any because he'd be removing the discs (if he's able to do the anterior procedure). My curve is 47 degrees, and my bending xray looks almost straight. It's not like I'm short. I'm already 5' 8 1/2". I just like the idea of change. Lori ______ 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: Buterrflii@aol.com Date: Thu, 29 Jul 1999 17:14:46 EDT Subject: Re: rib hump: what, when where etc. A rib hump (I think) is the spine pushing on your ribs on one side and when you bend over there's a hump sticking up; that's when it shows the most. I have one but it's only noticeable when I bend forward. I'm pretty sure everyone with scoliosis has one, but every case is different. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: NBiagini@aol.com Date: Thu, 29 Jul 1999 17:50:57 EDT Subject: Re: rib hump: what, when where etc. << Is it ok to get chiropractic adjustments when you have a fusion? The more I think about it, the more it seems like something that would break up the fusion.>> Sara: I've had them (long after my surgery) for pain relief. But, I can't say they were very helpful to me. Nor did they help much before surgery. Then again, nor was my pain that horrible. This I know - once that fusion has solidly healed, the chiropractor can't break it up any more than one could break up a "regular" spine. I remember teasing my (baseball loving) brothers that we could all be hit in the back with a baseball bat - and I was more likely to survive it than they would, having a sold bone back now! Natch, this is not a recommended past-time..... <> With my scoliosis (typical here), the spine actually rotated on its axis, besides curving sideways. The rib cage follows the rotation, which left me with a "hunchback" not unlike Quasimoto (the Hunchback of Notre Dame). But, Quasimoto's is MUCH MUCH MUCH worse than mine, but I hope this helps you picture what I call my "rib hump." It is the back side of my right rib cage that followed the spine rotation which causes this hump. You should know that most of my friends and family don't even notice the hump like I do. I do have long hair, and love to wear shoulder pads (this helps to hide it), and I try not to wear anything with a low cut square back (spagehti straps are therefore out). Anything with such a back amy be thrown off my the hump. Hope this helps. ....Nancy in Santa Clara, CA fused today from T4-T12, with about a 42 degree "S" curve ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Michael L Gordon" Date: Thu, 29 Jul 1999 18:30:17 -0400 Subject: Using new SpineCor dynamic brace from Biorthex Our daughter is wearing the new SpineCor dynamic brace, and I wanted to share with the readers of this list the excellent experience to date with this brace. Our daughter is 11 years old, has a 24 degree curve and has been wearing the SpineCor brace since the beginning of June. This may sound like an advertisement for the SpineCor brace, but I assure you that it is not. Here are just the comments of a family who are so thankful that such a breakthrough treatment protocol has been made available. I encourage readers to go to the Biorthex site at www.biorthex.com and read about the SpineCor brace and Biorthex. The company is located in Montreal, Canada and has established U.S. operations. The brace is available through medical organizations; however, it is a new treatment protocol and not every health professional may be aware of its availability. For example, I was the one who informed a local orthopaedic surgeon of its existence. (I found out about the brace via this mailing list - there have been references to SpineCor and Biorthex from time to time.) Compliance has been very easy for our daughter. She wears it 22 hours a day and is not at all restricted in her movements; in fact she plays tennis and bowls even better while wearing the brace. The brace is very comfortable to wear. The web site can better explain than I can that the brace is dynamic in nature; it helps the individual improve her/his posture over time. Sincerely, Michael Gordon michaelg@prodigy.net ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Scolio1@aol.com Date: Thu, 29 Jul 1999 16:29:55 EDT Subject: Jo's story Dear Jo, Being somewhat new to the list I am not familiar with your story, but saw your recent post that you have been through reconstructive surgery, which I am also facing. Would you be willing to repost some info about what you had done and your experience? Thanks, Barbara ______ 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: AirMort@aol.com Date: Thu, 29 Jul 1999 16:38:37 EDT Subject: Re: Revision Surgeons Hi Linda, Thanks for your swift reply. It may have been me who talked @ Dr. Light. I sent you a FAX and mentioned him. Was your surgery done by DR. Bradford? Do you have names of specialists in the East Bay that work on adults? Thx, Audrey ______ 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: BettRich@aol.com Date: Thu, 29 Jul 1999 18:56:20 EDT Subject: Re: [Fwd: my story (and questions)] I am interested in what you can do now that you were unable to do before surgery. Betty ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: LLevine2@aol.com Date: Thu, 29 Jul 1999 19:06:46 EDT Subject: Re: New Brace Dr. Peter Pizzutillo of St. Christopher Hospital for Children, Erie Ave. at Front Street, Philadelphia, Pa 19134-1095, Telephone: 215 427-3423, Fax 215 427-3414. I got this information from the Biorthex Web site. Biorthex is the company that sells the wrap around brace that they call SpineCor. Linda LLevine2@aol.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: "Henry G. Herford, Jr." Date: Thu, 29 Jul 1999 17:28:11 -0500 Subject: Re: Doctors appointment Tyler--That is what happened on my first visit. Are you going to have to have surgery? If you are going to, you are at a great place. E-mail me sometime. Rachael 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: "Michael L Gordon" Date: Thu, 29 Jul 1999 18:32:22 -0400 Subject: Using new SpineCor dynamic brace from Biorthex Our daughter is wearing the new SpineCor dynamic brace, and I wanted to share with the readers of this list the excellent experience to date with this brace. Our daughter is 11 years old, has a 24 degree curve and has been wearing the SpineCor brace since the beginning of June. This may sound like an advertisement for the SpineCor brace, but I assure you that it is not. Here are just the comments of a family who are so thankful that such a breakthrough treatment protocol has been made available. I encourage readers to go to the Biorthex site at www.biorthex.com and read about the SpineCor brace and Biorthex. The company is located in Montreal, Canada and has established U.S. operations. The brace is available through medical organizations; however, it is a new treatment protocol and not every health professional may be aware of its availability. For example, I was the one who informed a local orthopaedic surgeon of its existence. (I found out about the brace via this mailing list - there have been references to SpineCor and Biorthex from time to time.) Compliance has been very easy for our daughter. She wears it 22 hours a day and is not at all restricted in her movements; in fact she plays tennis and bowls even better while wearing the brace. The brace is very comfortable to wear. The web site can better explain than I can that the brace is dynamic in nature; it helps the individual improve her/his posture over time. Sincerely, Michael Gordon michaelg@prodigy.net ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: NBiagini@aol.com Date: Thu, 29 Jul 1999 17:28:07 EDT Subject: Re: Lori's comment about height gain In a message dated 7/28/99 9:03:04 PM Pacific Daylight Time, BGallen778@aol.com writes: << I have read of people getting as much as 3" taller after scoliosis surgery. Was that in posterior-only surgery? Why would removing the discs prevent the height gain if bone discs are inserted in their place? >> I gained height because I did not have discs removed. So, the connection with height gain sure seems to me to be associated with whether or not discs are removed...... ______ 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: Linda Racine Date: Thu, 29 Jul 1999 16:12:32 -0800 Subject: Re: Revision Surgeons Hi Audrey.... John Gray did my surgery. In the East Bay, try Peter Slabaugh or Ron Blackman. Ron Blackman is one of the pioneers in minimally invasive (endoscopic) scoliosis surgery. - --Linda ______ 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: AirMort@aol.com Date: Thu, 29 Jul 1999 16:53:37 EDT Subject: Re: Audrey's reply Hi Barbara, Many thanks for your response. I saw an orthopedist in98 and I believe the curve was 68 degrees. It is in the lower back. I feel 0k if I don't do much, but walking is painful after a block or so. I am 62 years old, and wondering if surgery may do more harm than possible benefits to be gained. Sit-ups seem to help a lot. Dr. Light says he can decrease the curve 50% by removing 4 discs and a rib to be used with the rod for a fusion. He seems to know what to do, but I am wondering if I should try exercises and a brace for walking as a treatment befor comitting to surg. Audrey ______ 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: Linda Racine Date: Thu, 29 Jul 1999 16:21:57 -0800 Subject: Advice/Diagnoses Hi... I'd like to remind list participants about not giving medical advice, or making medical diagnoses, online. Your advice and/or diagnosis may be incorrect, and, if heeded, may do harm. Thanks for your consideration. Regards, Linda ______ 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: Ed & Krisite Hodas Date: Thu, 29 Jul 1999 19:56:49 -0400 Subject: AMA or CHIROPRACTIC CARE Hi everyone, I have written a couple of times but just in case anyone doesn't know me, my name is Kristie and I have a daughter 5 with a 26 degreee C curve. I am feeling very frustrated because I have lots of friends who want to help Rachel get better, they have good intentions and some good ideas, one friend believes his chiropracter to be the best and even had this gentleman call me this evening at home because they do not want Rachel to wear a brace. The Chiropracter states that the brace is not normal and is restrictive, it does not address the true problem just tries to force the spine to be straight. I do agree that the brace does not correct the original reason she has scoliosis (obviously because it is of unknown origin)but I have heard so many success stories about people who have worn a brace and their curve was significantly reduced and also have read the success percentage of a brace is around 80%, he pretty much seems anti-doctors in general so I had to sift through his judgements on the AMA and listen carefully to see if he really had anything helpful to add. He seems to feel that Rachel could very well have a nerve that is being pressed on and that is causing her whole spine to be out of joint and that the brace would not correct the nerve being pressed on but instead force the spine to straighten unnaturally. He has a computer that can find where the temperature in your spine is higher then the rest of the spine, indicating the pressed nerve. When I told him that I was afraid of choosing the wrong method of treatment (traditional bracing or traditional chiropracter care) and finding out a couple of months later that her curve has now increased his response was scoliosis doesn't kill anyone and whats a few degrees? If we see it is progressing steadily then maybe I should try bracing but he is against it. I have an apponitment at the Schriners in Phila. PA next week and can't wait to go. Everyone I have spoken to says they are the best. I brought them up to him and asked if his method was that good why doesn't Schriners use it, they are not for profit? He said they are still Drs and stick to there book methods. I understand he has a chip on his shoulder about orthopaedics, that is evident, but is there any validity in what he is saying? Of course, if there is another way besides putting my daughter in a restrictive brace for the next 10 years of her life I sure want to know about it. I do not know anything about this or the traditional brace method and am not offering an opinion on either instead I am a mother who wants to take the very best course of action for her daughter and would like to hear what some of you have to say about this. Kristie (mom to Rachel 5 years) ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Sarah Campbell Date: Thu, 29 Jul 1999 20:28:02 -0400 Subject: Re: -- No Subject -- > > Do you have any pain? Ha! What kind of question is that? It's hard to tell anymore. My upper back gets tired really easy. Since my wreck my upper back is mighty tender, and my lumbar hurts too - the angle is too acute and that's exactly what it feels like. Do you do any kind of exercise, like yoga, for > your back? I've just started taking Pilates, but I don't know if it's hurting or helping. I can definitly tell that my spine has lenghtened, but there's nothing to do with the extra lenght. I can't hold my head up any higher I'd really like to find some exercises to help - I know they're out there. I took one yoga class once, and I don't recall anything that seemed like it would do any good. Sarah > I teach yoga in town and am interested in helping people with scoliosis. > > kate > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Linda Racine Date: Thu, 29 Jul 1999 17:50:26 -0800 Subject: Re: AMA or CHIROPRACTIC CARE Kristie... You are right to question this. I know a young lady, whose mother was convinced by a chiropractor, that he could stop the progression of her curves. When she finally took this child back to a surgeon at about age 14, her curves were >150 degrees. Her life has been severely impacted by this chiropractor. I would ask the chiropractor to provide proof that his methods can reduce structural scoliosis. If he does provide proof, take it to your orthopaedist for review. I think that chiropractors can help reduce the pain some of us experience from scoliosis. But that's about it. I have never read any published study, or even individual case, where chiropractic treatment reduced, or even stopped, curves. If you do decide on the chiropractic route, PLEASE take your doctor to the orthopaedist at regular intervals, to be sure the curve(s) aren't worsening. And contrary to what this chiropractor told you, although it's not common, scoliosis can kill. It only happens in severe cases, so you certainly want to ensure that your daughter doesn't reach that point. Best of luck. Regards, Linda ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Georgina Van Horn" Date: Thu, 29 Jul 1999 19:04:58 PDT Subject: Re: my story (and questions) Sandy, So happy you have decided and have a date. You will get so many good thoughts and prayers from me and the whole group. You did your homework and Dr. LaGrone has such a good reputation. Just put yourself in his hands. At some point, that's all we can do. I know it will all turn our fine. keep in touch. Regards, GEorgina _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.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: Your Name Date: Sun, 27 Jun 1999 08:27:40 -0700 Subject: Re: Good News Karen, Sam has been holding at 20 degrees thoratic and 18 lumbar for about 18 months. She is checked every 6 months and has been experiencing slow growing period which has probably helped in maintaining no change in her curve. Know that she is turning 8 years old, her ortho suggested that we monitor her closely since we don't know how she will react to an growth spurt. She has been eating allot lately, which has never been her character, so we are keeping a watchful eye and we feel blessed for every check up which she has held. The battle is know becoming her pediatrician who is losing interest in approving these 6 month check ups. He approves it because I insist and he respects my knowledge of her condition. He will not approve her ortho to x-ray her, he does them in his office instead. So far I have not fought him on this since she has maintained, but I do not have allot of confidence in their Lab tech's experience on Scoliosis panels. I guess I am choosing my battles until things begin to change. My Four year old daughter was just diagnosed with scoliosis also, but her curves are still very minor and we are also monitoring that. Wow, sorry this got so long. Thanks for listening, Jackie > ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: CRBwow@aol.com Date: Thu, 29 Jul 1999 22:15:30 EDT Subject: Re: AMA or CHIROPRACTIC CARE Kristie, I felt I should write to you. You seem to be getting an abundance of advice from people, at least some of whom have their own agenda. I am not a lawyer, but I don't even think it is ethical for a chiropracter to call someone at their home and try to persuade them to let him work on them or their family. I would look very much askance at such a tactic. You would be very wise to take what he has to say with about a pound or two of salt. Remember all these doctors that he is bashing have saved many people's lives. I would also ask myself this question: if I take my child to him, and my child gets worse, will he be honest enough to refer me to a doctor and admit that he is not able to help her, or will he rationalize and again try to persuade me not to get medical treatment for her. Is this a chance you want to take?! I don't mean to be critical, but in your waffling you probably opened the door for one very persistent chiropracter to keep bugging you. Again a question: Do you want a doctor with that kind of cavalier attitude about scoliosis to treat your daughter scoliosis?! Yes, scoliosis probably doesn't kill anyone, but you and I have certainly read enough posts to know that it is NOT a matter of a few degrees, AND it certainly CAN compromise a person's life considerably if it is very severe. We are talking upwards of a l00 degrees in some cases. That doesn't sound to me like a few degrees. Re: Shriners: I and a number of other parents on this list have one or more kids at Shriners. They are an incredible organization, and instead of being treated by just doctors, you are treated by professors of doctors. The latest technology is available, and all for no cost. I think his attitude toward Shriners comes from resentment that they take prospective patients away from him because parents are foolish enough to put money ahead of their child. I have read about many kids in treatment, and I don't know of any for whom the financial considerations are more important that what will best help these young people. I am sure there are people with kids at Shriners, who have medical insurance, and don't have to have the free care, but they still use Shriners, because of their top of the line knowledge and technology. Yes, they are still doctors!! Thank God for that!!! Is there validity in what he says? Honestly, I have to say it is possible that there is validity in his statement, but my reaction to what he has said to you makes it difficult for me to look past the anger and see it, if in fact it exists. I think it is criminal that he would call you and put this kind of pressure on you at a time when you are scared and searching for answers, and just starting out with this journey. Of course you would rather not have your child in a restrictive brace for ten years. Who would?! How many of us who have kids in braces (and mine is one of those kids) wouldn't jump at the chance for a solution that would work and not involve braces. I would. But to go after you now when you are vulnerable and scared is reprehensible, and if it were me, I might even get mad enough to call the Medical Society on him. We are many of us inexperienced in this situation. We are all learning from each other as we reach out to help and encourage one another. This list will be a great blessing to you as you take this journey. You are doing right by asking the questions, and I also believe you are doing very right by taking Rachel to the Shriners. You can't possibly do better than Shriners. They are very excellent. My only other suggestion is to create a file of all of Rachel's medical records, x-rays, etc. Keep it up to date. Ask questions. Ask LOTS of questions. If you think of a question when you are not at the doctor's, write it down in a notebook that you get for that very purpose. You could also use this notebook to record your observations and conclusions about your daughter;s scoliosis. Take the notebook with you to the doctors. If you have questions, tell them up front when they come in that you have questions, and you will want answers to them at some point in the visit. Ask every question, and don't let the doctors slip out without giving you an understandable answer to each question. If you are not certain you understand the answer, repeat it back to the doctor using your own words and your own phrases, to see if you have it right. Believe me, you will find that you think of questions five minutes after you leave the doctor, and you will be glad to have that notebook to write them down. Now........... you are a great Mom!! You are doing so many, many things right!! Your beautiful little girl is going to be OK!! And you will be OK. Give her a hug, and give yourself a hug. I am willing to be a sounding board, or a shoulder to lean on or someone to ask questions of. If I don't know the answer, I will tell you, and I will try my best to only give you accurate information. Now follow your head and don't let anyone lead you astray. You are your daughter's soldier, and you must fight for her just like you are doing. Blessings, and I care, Cecile ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Your Name Date: Sun, 27 Jun 1999 08:38:14 -0700 Subject: Re: Using new SpineCor dynamic brace from Biorthex Michael, I am interested to hear how your daughter does (her curve) using the "spinecor" brace. I asked my Ortho about it and he was skeptical. The cost factor was one issue he mentioned and the lack of data also. He did understand why it may be appealing to teens due to the flexibility and discrete design. He also mentioned how eager families and their ortho's are so to believe in a guaranteed "fix-it". Though I have allot of confidence in his opinions, I do like to do my own research. Thanks for your information and good luck to your daughter. Jackie ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: CRBwow@aol.com Date: Thu, 29 Jul 1999 22:20:47 EDT Subject: Re: AMA or CHIROPRACTIC CARE Hi Linda, I am not trying to be critical, and I hope you take this in the fun spirit it was intended, but................. why would Kristie want to take her doctor to the orthopedist at regular intervals?! Blessings, Cecile ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Georgina Van Horn" Date: Thu, 29 Jul 1999 19:38:47 PDT Subject: Re: Lori's comment about height gain I gained back 2" after A/P surgery. It wasn't a priority, of course, but a nice bonus!! Georgina _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.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: Alyssa Date: Thu, 29 Jul 1999 21:59:02 -0500 Subject: Re: Lori's comment about height gain It seems to me that multiple factors would determine height gain; i.e. curve correction and the net effect of disk removal and replacement with bone disks. I gained 5 inches from traction and surgery in the '70s, but my curves were 83 degrees and 63 degrees - a lot of height to be gained by straightening curves of that magnitude. Unfortunately, I'm still very short - hadn't finished my growth when I was fused. I saw the height gain as one of the perks as well as suddenly having a waist. It was amazing to see the results of the surgery for the first time after 9 months in a body cast. Back in those days we were clueless until the cocoon finally came off. Alyssa ______ 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: Alyssa Date: Thu, 29 Jul 1999 22:04:37 -0500 Subject: post fusion decompensation & kyphosis Hi all, I'm interested in hearing from anyone who has had revision surgery to correct decompensation in the coronal plane (i.e. out of plumb laterally in the vernacular of an engineer). Also, has anyone had surgery to correct junctional kyphosis above a fusion? This may be in my future but after 3 scoliosis surgeries, I'm gun shy (or should we say scalpel shy). If anyone has had similar surgery, I'd appreciate information about your experience. Thanks. Alyssa ______ 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: "Joseph Boatman" Date: Thu, 29 Jul 1999 22:22:41 -0500 Subject: Re: Revision Surgeons Where is Ron Blackman located and how do I reach him? I'm in Texas, 52 and facing revision surgery once I identify a surgeon who is experienced and has a high success rate....I appreciate any info you can give me. Thanks, Jennie - -----Original Message----- From: Linda Racine To: scoliosis-medical@ai.mit.edu Date: Thursday, July 29, 1999 6:23 PM Subject: Re: Revision Surgeons > >Hi Audrey.... > > ... ______ 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: Linda Racine Date: Thu, 29 Jul 1999 21:18:11 -0800 Subject: Re: Revision Surgeons Joseph.Boatman@worldnet.att.net... Ron Blackman practices at Oakland Children's Hospital (although he also sees adults). He has a web site at http://www.scoliosisrx.com/. He has not, however, done any revision surgery via endoscope. His minimally invasive technique, at the moment, is only used on the mid thoracic (can't remember the exact number) thru high lumbar (to L2) vertebrae. - --Linda ______ 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: Linda Racine Date: Thu, 29 Jul 1999 21:11:43 -0800 Subject: Re: AMA or CHIROPRACTIC CARE Cecile... I said that because the chiropractor that was seeing the young lady to whom I referred, had been using the same x-rays, year after year, to convince these people that her curve wasn't increasing. Amazing, huh? They never could answer my question of what he was attributing her ever-increasing rib hump to. I don't think most chiropractors are like that, but I'd want to keep my child's scoliosis specialist in the loop, just in case. - --Linda ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: c j day Date: Thu, 29 Jul 1999 00:12:11 +0530 Subject: Tracking a New Brace Solution-Still(progress report and request for assistance) Anyone in Philadelphia?! Still looking for alternate confirmation and additional details on this new bracing system reported on the news as "corrective". The UT/Southwest Medical Research Library in Dallas found a reference to Dr. Peter Pizzutillo at St. Christopher's Hospital for Children, in Philadelphia: "Cervical Spine Disease in Children", Orthopedic Clinics of North America(journal), Vol. 30,No. 3, pp.457-466, July,1999. This was reported to be the latest of several articles which I will retrieve asap. jeff/ wa5ekh@juno.com AND... From: Buterrflii@aol.com wrote: Date: Tue, 27 Jul 1999 18:44:34 EDT Subject: Re: machine Thank you so much for sending that information out. I live in the L.A. area and have already scheduled an appointment for tomorrow to see a Doctor that has that machine. I will post a letter when I get back to tell you all about my consultation with him. Thanks again, Vanessa ...... What happened? What machine? Vanessa?? Jeff/ wa5ekh@juno.com ___________________________________________________________________ Get the Internet just the way you want it. Free software, free e-mail, and free Internet access for a month! 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