From: bounce-scoliosis To: scoliosis-digest@ai.mit.edu Subject: scoliosis V1 #1197 Reply-To: Errors-To: bounce-scoliosis Precedence: bulk scoliosis Tuesday, 18 May 1999 Volume 01 : Number 1197 Today's subjects for scoliosis, scoliosis-medical, scoliosis-child and scoliosis-teens: Re: Failed Fusion [DLac380102@aol.com] Re: Failed Fusion [NBiagini@aol.com] [Fwd: Scoliosis FAQ #19] [Richard Lethin ] Undershirts [Susan Whitmore ] Re: Undershirts [NBiagini@aol.com] Re: failed fusion - now what? [NBiagini@aol.com] Re: failed fusion - now what? ["Patricia A. Cherry" ] Re: failed fusion - now what? [Alyssa ] RE: Whether to have surgery now ["Jaskulek, Steve" ] Jenny's Boston brace ["Cecile Ruth Betzer" ] Hayley's Surgery [MISHA233@aol.com] Education - Overview of Scoliosis ["Larry Zachmann" ] Re: Hayley's Surgery [CLPreszler@aol.com] Re: Whether to have surgery now [R.N.A.@worldnet.att.net] Re: Jenny's Boston brace [NBiagini@aol.com] Allison / Hayley [Mary Kirkpatrick ] Re: Whether to have surgery now [NBiagini@aol.com] Re: Brace [Cassy8888@aol.com] Re: brace tomorrow [Kaylin Morrissey ] Neurological Surgeon vs. Orthopedic Surgeon [Crico1227@aol.com] Referred to a Neurological Surgeon! [Crico1227@aol.com] Question for Nancy [WnkWells@aol.com] Syrinx.... ["sandy jacobs" ] Re: Brace ["Jenni Lytle" ] endoscopic scoliosis surgery ["The Goss Family" ] Re: Whether to have surgery now [R.N.A.@worldnet.att.net] Re: Hayley's Surgery [Silberkrmf@aol.com] Re: Lindas surgery Pre-op [Crico1227@aol.com] Re: failed fusion - now what? [Joseph Boatman ] Re: endoscopic scoliosis surgery [Linda Racine :{{ [MSMRHINES@aol.com] ---------------------------------------------------------------------- From: DLac380102@aol.com Date: Mon, 17 May 1999 06:05:11 EDT Subject: Re: Failed Fusion Linda, In regards to your response: << I'm not sure if there is a technical difference between arthroscopy and endoscopy. Both are used to describe surgery via scope. Dr. Ronald Blackman, who is one of the pioneers in using endoscopy for scoliosis surgery, tells me that he thinks he'll be doing some lumbar scope surgery within a year. >> I'm was wondering where Dr. Ronald Blackman is located. I'm very interested in endoscopy procedures for the lumbar region...and I realize it hasn't been fully developed yet, but my lumbar curve is my biggest and I'm told my other 2 curves are "compensatory" curves. So, I figure, if they treat the lumbar one, maybe the other two will straighten out since they are caused by the lumbar curve. I'll wait if I have to for this procedure to be developed; I was just curious as to what city this doctor is located. Thanks for the info! - -- Donna Jean ______ 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: Mon, 17 May 1999 10:22:49 EDT Subject: Re: Failed Fusion In a message dated 5/17/99 3:46:14 AM Pacific Daylight Time, DLac380102@aol.com writes: << where Dr. Ronald Blackman is located >> Donna Jean: He is in Oakland, CA, and I believe at the Kaiser Hospital there. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Richard Lethin Date: Mon, 17 May 1999 12:50:08 -0400 Subject: [Fwd: Scoliosis FAQ #19] This is a multi-part message in MIME format. - --------------A2DF225D02AA1778D667B534 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit - -- Reservoir Labs, Inc. 628 Broadway, Suite 502 New York, NY 10012 212-780-0527 212-780-0542 fax - --------------A2DF225D02AA1778D667B534 Content-Type: message/rfc822 Content-Transfer-Encoding: 7bit Content-Disposition: inline Return-Path: Received: from life.ai.mit.edu (life.ai.mit.edu [128.52.32.80]) by deer-park.reservoir.com (8.9.0/8.9.0) with ESMTP id OAA08728 for ; Tue, 11 May 1999 14:00:10 -0400 (EDT) Received: from elvis.fltdyn.com ([209.51.94.1]) by life.ai.mit.edu (8.9.1/8.9.3/AI2.10/ai.master.life:2.4) with ESMTP id NAA12044 for ; Tue, 11 May 1999 13:49:10 -0400 (EDT) Received: from fltdyn.com (davidl.fltdyn.com [10.0.1.77]) by elvis.fltdyn.com (8.9.1a/8.9.1) with ESMTP id KAA22217 for ; Tue, 11 May 1999 10:48:34 -0700 (PDT) Message-ID: <37386D3C.88D9B962@fltdyn.com> Date: Tue, 11 May 1999 10:47:41 -0700 From: David Lee X-Mailer: Mozilla 4.5 [en] (Win95; I) X-Accept-Language: en MIME-Version: 1.0 To: lethin@ai.mit.edu Subject: Scoliosis FAQ #19 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit X-Mozilla-Status2: 00000000 Rich, Here is my family's personal experience with HMO's (recent article in the Phoenix New Times). For over a year we have been fighting with PacifiCare of Arizona to obtain our preferred treatment for my daughter's 65 deg curve. The article is at: http://phoenixnewtimes.com/1998/current/feature2-1.html The article is titled 'Twisted System' by Chris Farnsworth. David Lee davidl@fltdyn.com (503)692-0803 - --------------A2DF225D02AA1778D667B534-- ______ 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 Whitmore Date: Mon, 17 May 1999 09:46:14 -0700 Subject: Undershirts To hmc who was wondering about undershirts -- my daughter wears a Boston brace and the only thing she will wear under it is the cotton tubing -- called Cottonette and comes in different widths. It has no seams, and comes in a 40-foot roll -- you cut it off as long as you want, and it is machine washable. We had her orthotist order a roll of it for her, and our insurance paid for it. You can also order it from the Boston brace website. ______ 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: Mon, 17 May 1999 13:07:51 EDT Subject: Re: Undershirts In a message dated 5/17/1999 10:03:15 AM Pacific Daylight Time, susanw@orshakes.org writes: << You can also order it from the Boston brace website. >> Do you have the web address for that site? ______ 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: Sun, 16 May 1999 23:42:50 EDT Subject: Re: failed fusion - now what? Jennie: Actually, most of the women I've met over the years (that had scoliosis surgery) had successful surgeries - meaning they never had to go back in. My surgery was also "successfull" in that it was not for a failed fusion, but for a "too much collagen" issue that sent me back a second time (1998). Plus, the second time was to add the rod that I never got the first time (1977). Make sense? If it helps, I have never regretted having the surgery(s). It took time & research to come to the decision to have the surgery and to choose the Doctor both times, but I am certain I would have been worse off if I had not had it done. Good luck in reaching your decision. ..........Nancy ______ 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: "Patricia A. Cherry" Date: Mon, 17 May 1999 02:55:58 -0400 Subject: Re: failed fusion - now what? Chris, You said you would have to pay your own health insurance after 6 months. This is a current problem I am dealing with. Why isn't it discrimmination or legally against the American Disability Act - that if you are on a disability leave, you are still an employee why your employer can stop their contribution to your health insurance? Thanks, Patty ______ 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: Mon, 17 May 1999 01:11:46 -0500 Subject: Re: failed fusion - now what? Jen, I had pseudoarthrosis repair done in 1975 for 2 areas one of which was L4-L5. It was no day at the beach but was not nearly as bad as the first go round T5-L5. The recovery period was shorter. I required no blood the second time. This was back in the days of body casts, and they did keep me in bed a few more days that time before letting me get up with the cast. I wore the cast for 6 months compared to 9 months the first time. I would suggest that you get at least one more opinion so that you can be as confident as possible that the pseudoarthrosis is the source of your pain. It is a tremendous disappointment to go through an operation fully expecting pain relief and not get it because the pain is at least in part due to another undiagnosed problem. Good luck. 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: "Jaskulek, Steve" Date: Mon, 17 May 1999 09:24:53 -0400 Subject: RE: Whether to have surgery now Sandy, I am not sure of what type of instrumentation Dr. Kostuik is going to use for my fusion. I asked about this in each of my three doctor interviews, and did not get much of an answer from any of them. I decided not to pursue this, because frankly I do not have any good way to evaluate the answer! The plan right now is that I will not wear a brace following surgery, although I suspect that can change depending on the outcome. I was told to expect to be in the hospital for about 5 days, and then away from work for 6-8 weeks; I have been warned, however, that the 6-8 week number is highly variable and suspect. Dr. Kostuik feels strongly that patients with this type of surgery do no exercise except walking for the first 3 months; they have seen a number of patients who over-extended themselves following surgery, which led to slower recovery. After this period, I will be instructed on how to include other types of excercise into my recovery program. I do not have any way to evaluate this approach for myself, but I do plan to research a bit. I was told that Dr. Kostuik would be doing the surgery himself, assisted by other surgeons learning this specialty. I hope answers help. Steve Columbia, MD > ---------- > From: Sandy Morey > Reply To: scoliosis-medical@ai.mit.edu > ... ______ 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: Bogima@aol.com Date: Mon, 17 May 1999 10:37:19 EDT Subject: Re: failed fusion - now what? Hi Jen, I'm 57, had my first scoli surgery 22 years ago and my revision surgery 18 months ago. I didn't need the second surgery because of a failed fusion, though. I needed it because my first fusion from T-3 to L-4 with insertion of a Harrington rod put pressure on the discs below and caused degenerative disc disease. By the time I had the second surgery, I felt as though my back would disintegrate and collapse at any moment and I was in extreme pain. In the second surgery, the Harrington rod was removed and the area from about L-3, to S-1 was fused, cages were placed in the anterior portion (though the surgery was posterior only) and Isola rods inserted from T-10 on down. I had the surgery because the pain impacted my quality of life and I needed to do something about that rather than give up, even if the surgery didn't work. I was willing to take the chance. I'm very glad I had the revision surgery, though recovery is painful and long. It's worth it. I still have some pain, but I'm not fully recovered yet and the pain lessens with time. It's not nearly as bad as it was before the surgery. I personally do not believe in waiting for the next and supposedly definitive treatment. It may take years and years to figure out that it's not that great after all. In the meantime, while waiting, I would have lost a lot of time. Also, I believe that if the back is deteriorating, time will only make the deterioration worse and therefore, possibly make eventual surgery and recovery that much more difficult. I think age is also a big factor. Surgery and recovery take a bigger toll as we age. The key thing is to find a surgeon who you trust. Visit at least three scoliosis specialists who have solid experience with revision surgery. A list of scoli surgeons can be found on www.srs.org. My surgeon was Dr. Boachie, at Hospital for Special Surgery in NYC. Good luck, and keep in touch. Bonnie ______ 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: Mon, 17 May 1999 14:36:35 -0500 Subject: re: book references I strongly recommend the Scoliosis Handbook by Neuwirth and Your Aching Back by Augustus White. My version of Your Aching Back is an old edition. Unfortunately, it does not contain a lot of information about scoliosis, but it does have a lot of practical advice and basic spine anatomy information written in terms geared toward non-medical people. I also have the Chronic Pain Control Handbook - got it on the bargain table at Border's or Barnes & Noble many months ago. I've leafed through it, and it appears to have some useful information. But I haven't had time to really peruse it yet. Alyssa ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Cecile Ruth Betzer" Date: Mon, 17 May 1999 11:00:38 +0000 Subject: Jenny's Boston brace It's been almost three weeks now. The first week was pretty pathetic, but the second week she really worked on wearing her brace. By Fri. it will be three weeks, and yesterday she wore it sixteen and a half hours, the day before fourteen. When we saw the doctor on Friday, I told him I felt her level of compliance had improved so much that they didn't need to continue their plans for a nighttime brace. She was there when I said I felt she could be in full compliance (22 hours a day) by the end of this week. So she really is working on it. But I feel for her too. She says her ribs hurt to even touch them now. I am so proud of her. Thanks for all the encouragement! Cecile Daughter Jennifer, fifteen, 30 degrees thoracic, 40 degrees lumbar, Boston brace ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: MISHA233@aol.com Date: Mon, 17 May 1999 09:07:11 EDT Subject: Hayley's Surgery Hello Everyone!! Hayley had her surgery on Friday, May 14th and it couldn't have gone any better. They thought she had a tethered cord, but once they in there they discovered she didn't which was wonderful. They put a growing rod in and got a significant amount of correction. It's unbelievable the difference in the way her back looks. She's still in the hospital and will be until probably Wed or Thurs. Just wanted to update everyone and I'll write more once she gets home. Allison (Mother of Hayley, 2, congenital scoliosis) ______ 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: "Larry Zachmann" Date: Mon, 17 May 1999 16:23:15 -0400 Subject: Education - Overview of Scoliosis Hi everyone, I just recieved a message in the mail from the Hospital for Special Surgery in New York City. They will be holding an education program Saturday June 5, 1999 on "Overview of Scoliosis: From Diagnosis to Treatment. Dr.'s Boachie and Dr. Neuwirth will be speaking along with others. Additional information can be found on their web site: http://www.hss.edu/education/overview_of_scoliosis.htm or calling Judith Leucher at 212-606-1057 Larry ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: CLPreszler@aol.com Date: Mon, 17 May 1999 16:07:22 EDT Subject: Re: Hayley's Surgery Allison, Thanks for Hayleys update. I am glad that things went very well!!! Best of luck in the coming days and weeks. Christal (Julia's mom, 16 months) In a message dated 5/17/99 4:04:02 PM Eastern Daylight Time, MISHA233@aol.com writes: << Hello Everyone!! Hayley had her surgery on Friday, May 14th and it couldn't have gone any better. They thought she had a tethered cord, but once they in there they discovered she didn't which was wonderful. They put a growing rod in and got a significant amount of correction. It's unbelievable the difference in the way her back looks. She's still in the hospital and will be until probably Wed or Thurs. Just wanted to update everyone and I'll write more once she gets home. Allison (Mother of Hayley, 2, congenital scoliosis) >> ______ 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: R.N.A.@worldnet.att.net Date: Mon, 17 May 1999 15:58:48 +0100 Subject: Re: Whether to have surgery now Steve, I can't speak for others but my doctor also did not have me do any exercises or PT, other than walking, for the first three months. Personally I really don't think I needed it. I spent one year prior to surgery in PT for strengthening and did really well in rehab after the surgery. I went to rehab because would be no one at home with me at the time. In a matter of days I was walking at a normal pace if not faster, climbing stairs, etc. They did a great job. I did go to PT around Nov for some minor problems and will start massage therapy since one small area still feels really tight. Every case is different--as are the doctors. I did miss the original post so I don't know if you're talking about revision or not. ______ 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: NBiagini@aol.com Date: Mon, 17 May 1999 17:47:52 EDT Subject: Re: Jenny's Boston brace In a message dated 5/17/99 1:16:11 PM Pacific Daylight Time, gosplady@guppy.pond.net writes: << could be in full compliance (22 hours a day) by the end of this week. So she really is working on it. >> Tears of relief are so much nicer than tears of frustration, heh? Congratulations to you both!! ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Mary Kirkpatrick Date: Mon, 17 May 1999 14:04:39 -0700 (PDT) Subject: Allison / Hayley Dear Allison What a relieve! I am very happy for you all. Good luck and enjoy being home. Write when you can. Thinking of you and hugs for Hayley Mary and Ben === Mary Kirkpatrick _____________________________________________________________ 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-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: NBiagini@aol.com Date: Mon, 17 May 1999 17:52:00 EDT Subject: Re: Whether to have surgery now In a message dated 5/17/99 1:45:50 PM Pacific Daylight Time, R.N.A.@worldnet.att.net writes: << I can't speak for others but my doctor also did not have me do any exercises or PT, other than walking, for the first three months >> Ditto - and I am now 7 months post-second-op and my Doctor still prefers that I only walk, although he is encouraging me to swim as well. Concept: Why micro-move that spine while it is trying to heal (I am 46 yrs old, fused T4-T12, titanium rod & 4 hooks). He cautioned me also against PT, since even the best PTist could not monitor me every second to ensure I was ABSOLUTELY doing it correctly....so just play it safe & sure. Thus, I walk (a LOT) and swim a bit.....Nancy ______ 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: Cassy8888@aol.com Date: Mon, 17 May 1999 18:09:46 EDT Subject: Re: Brace Jenni, is your spine better? Cassy8888@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: Kaylin Morrissey Date: Mon, 17 May 1999 18:53:31 -0400 Subject: Re: brace tomorrow CONGRADS.!!!!!!!!!! I bet it will feel real good to get that sweaty thing off of you. no worrys always kk TicoBrad@cs.com wrote: > I get my cast off tomorrow and start wearing my scoliosis brace. I will be > happy to get out of the cast. > > ... 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: Crico1227@aol.com Date: Mon, 17 May 1999 19:14:25 EDT Subject: Neurological Surgeon vs. Orthopedic Surgeon Is one better than the other for spinal fusion surgery? ______ 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: Crico1227@aol.com Date: Mon, 17 May 1999 19:18:22 EDT Subject: Referred to a Neurological Surgeon! Ok, now I have to find out about this speciality. And the Dr. Martin Cooper in Los Angeles (Cedars-Sinai Medical Center) to whom I have been referred by my HealthNet PCP. Any ideas? ______ 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: WnkWells@aol.com Date: Mon, 17 May 1999 20:27:47 EDT Subject: Question for Nancy Hi Nancy, I noticed in your message about exercise you said you are fused only T 4-12. Is that because you had a c curve only in the thorasic region, or did you have a s curve? It seems that most people on this mailing list are fused in the lumbar region as well. Thanks for your answer! ______ 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 jacobs" Date: Mon, 17 May 1999 17:48:43 -0700 Subject: Syrinx.... Hello, Thanks Cecile for the information on shriners!!! I will definately bring books, puzzle books and hmmm...maybe even the gameboy. It is so good to know others have been there, I guess that is why I read all the messages on the list each day. Okay, a syrinx is a fluid filled cavity in the spinal cord. I wasn't told a lot about it except that it was about the size of a quarter, which means they cannot do anything yet...but they are monitoring it. Supposedly alot of people with scoliosis have them, in Jon's case at first the doc's thought it may have caused the scoliosis, but the jury is still out because it is soooo small. It could have developed as a side effect of scoliosis. I hope I explained this correctly, if I haven't please feel free to explain better.... David I wish more people knew of the problems we all face with hmo's on a daily basis. We have been waiting for 2 months for a referal for the neurologist...argghh!!! Oh,Jon wears a boston brace also!!! 22 hours a day at this time, even though we are waiting for a referral for a new one!!! So I guess from my note you can see how excited we are to be going to shriners....woohoo no more referrals!!! Well lets hope not anyway.... Hang in there everyone, and thanks again Cecile!!! take care and be well Sandy Get free e-mail with a women.com membership at http://women.com! ______ 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: "Jenni Lytle" Date: Mon, 17 May 1999 17:31:19 PDT Subject: Re: Brace Yes I had surgery on june 8th 1998 Jenni _______________________________________________________________ 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-teens-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "The Goss Family" Date: Mon, 17 May 1999 20:51:45 -0400 Subject: endoscopic scoliosis surgery This is a multi-part message in MIME format. - ------=_NextPart_000_0012_01BEA0A7.1353E380 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable Dear Linda, I was VERY interested to see your comment about a Dr. who is working on = lumbar scope surgery. I have lumbar degenerative scoliosis - no prior = surgery, and so I am excited about the prospect of new surgical = alternatives. I have read about some of the new endoscopic disc = procedures - is this similar. Any other information or links on this = topic would be greatly appreciated. Thanks. Barbara in MD - ------=_NextPart_000_0012_01BEA0A7.1353E380 Content-Type: text/html; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable
Dear = Linda,
I was VERY = interested to see=20 your comment about a Dr. who is working on lumbar scope surgery.  I = have=20 lumbar degenerative scoliosis - no prior surgery, and so I am excited = about the=20 prospect of new surgical alternatives.  I have read about some of = the new=20 endoscopic disc procedures - is this similar.  Any other = information or=20 links on this topic would be greatly appreciated. Thanks.
Barbara in=20 MD
- ------=_NextPart_000_0012_01BEA0A7.1353E380-- ______ 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: R.N.A.@worldnet.att.net Date: Mon, 17 May 1999 21:18:57 +0100 Subject: Re: Whether to have surgery now Nancy, I thought my doctor was the only one who was so cautious. Quite frankly I was surprised that he allowed me to go back to work at three months, even though I felt that I could do it. Of course there were restrictions. He also mentioned swimming at the last visit, but I don't swim. Never wanted to learn because I really didn't want to get into a bathing suit--now it's a different story. And for those that don't know-I'm fused from T2 to and including L3, 3 stainless steel Moss-Miami rods, 14 hooks, 45 yrs. old, June 1 will be the 1 yr anniversary date. Lynne ______ 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: Silberkrmf@aol.com Date: Mon, 17 May 1999 23:53:28 EDT Subject: Re: Hayley's Surgery Dear Pam, Ruth, Lauren, Cecile and anyone else who would like to write and respond, I used to write frequently to a few people I met in this group, however I have not written in several months and my daughters history is progressing nicely. The people responding seemed to have young toddlers and that was not my case. My daughter is going to be eight in august and she was diagnosed with a s curve 27/28 degrees Nov. 1997. She has been wearing a Boston Brace since Dec. 1997. If she had the choice of wearing the brace and not wearing it she would definately choose not having scoliosis and a brace but, that is not the case. When we found out I explained to her the benefit of wearing the brace and what would happen if she didn't wear the brace. She is very stubborn and strong willed. I also showed her pictures. Marisa made the right decision to help her back and hopefuly avoid surgery. She was told to wear the brace 23 hours and we were very good about choosing a good hour for freedom. Our first summer in the brace was not as bad as I expected. It was just last summer 98' which was not that hot. I hope we have another good summer. Marisa was given a little more freedom of wearing it 20 hours a day at our disgression. By the end of the summer Marisa's curve had improved to 12 degrees. We changed t-shirts whenever Marisa felt it was wet and used a lot of powder. Marisa sleeps on a regular mattress but on top of the mattress is a foam pad, we call it the egg crate since that is what it looks like. It is the size of the mattress and Marisa says it makes sleeping much more comfortable. Now that she has been in the brace for a year and a half her curves are down to 8 degrees. At our next visit in july her doctor wants her to take off the brace for 24 hors and the x-ray out of the brace. This is scary for me since I know the curve can seem like it is improving in the brace but the real numbers are when they are out of the brace. Does anyone know what they are really looking for with a child still so young.? What can I expect to happen to the curve out of the brace for 24 hours? What questions should I ask? Sorry this got so long. I hope I answered some of your questions and I hope someone can answer mine. It is nice getting to know new people. Sincerly, Karen, mother of Marisa ______ 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: Crico1227@aol.com Date: Mon, 17 May 1999 21:20:18 EDT Subject: Re: Lindas surgery Pre-op Hi, George, Got it all, thanks and forwarded to my hubby Charles. Trying to keep him at the same level of informed that I am. The latest question now after my HMO referred me to yet another doc (read a neuro guy), is, what about Neurosurgeons? Are they better, the same, not as good as, Orthopedists? I posted that question and will be copying this message to the post as well. I have found out a little on my new referral doc. He is Dr. Martin Cooper, Cedars-Sinai Medical Center. The only info so far from my last couple of web search hours is that he operated on Liz Taylor in 1997 to remove her benign brain tumor and George Burns in 1994 when he fell and hit his head on the bathroom floor. Dr. Cooper also made news when he operated on a local tennis player for hyperhidrosis, excessive sweating. That was in Feb of this year. They stated that he was Clinical Chief of Neurosurgery. The article went on to say that he performed endoscopic sympathectomy, a procedure that uses the world's smallest endoscope, a fiber optic camera just three millimeters wide, to locate sympathetic nerves that run behind the lungs and through the chest. During the procedure, the T2 segments of the nerve chain which control sweating of the hands and feet are severed topermanently stop excess perspiration. Sounds to me like a lot of nerve stuff, not bone stuff. Take care, Carol ______ 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: Mon, 17 May 1999 21:48:02 -0500 Subject: Re: failed fusion - now what? Hi Bonnie I'm so glad to hear from someone who has had revision surgery. I agree w/you - I made the decision re: the first fusion based on the amt of pain, quality of life, and not wanting deterioration. Recovery was tough at 46. The first dr. has said no pt even later after 4 mos. This dr. is saying no pt before because of possible further damage and the other I have a scheduled appt w/sees PT as part of preparing for surgery. My back really hurts despite the meds - a different kind of pain because the last good vertebrae L6 is deteriorating. The revision should stop the degeneration. So I know I will have the surgery - I will do what I have to do depending on what the second opinion says. I now have a lead of a dr. in Amarillo Tx who has extensive experience w/revisions so that will be my third. I wish I could go anywhere in the US, but I doubt Humana HMO will pay for it. Thanks for the suggestions and info - I am scared of having surgery again - the first time was traumatic - I just had not had that kind of pain or felt so helpless ever. I've stopped feeling sorry for myself for now. Have a CAT scan scheduled for Thurs - w/dye because of the rods - have you had this and did it hurt? I hope we can keep in touch - I'd like that...Jennie Bogima@aol.com wrote: > > Hi Jen, > > ... ______ 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: Barbara Date: Mon, 17 May 1999 21:20:45 +0000 Subject: Surgery for 50 Year Old Hi Carol, Here's a bit of my story... I'm 50 years old woman. My idiopathic scoliosis presented at puberty ("S" curve - not sure of the degree amount but major bad!) - age 12. A year later I underwent a spinal fusion T5-12 and spent 14 months in a total body cast. For 32 years I had an excellent quality of life (e.g. pain free, skiing, sailing). Then the downward progression started. Fourteen months ago I had surgery (not revision 'cos original fusion is healthy and stayed in place) to fuse above (T5-3) and all the way down into my sacrum. Two titanium rods run the length of my fusion and are screwed into my sacrum. My procedure was a success. Fortunately I had been seeing my current surgeon for 18 years so that he could monitor my childhood fusion and my overall scoliosis status. He knew my case well and it was comfortable for me to proceed with confidence with him. For eight months I wore a removable brace when ever I was upright (expect when I showered). I took short walks around outside my home three weeks post-op. It was about eight weeks before I was strong enough to drive. I expect my recovery will take about 18 months (pain decreasing and stamina increasing). I'm not back to work yet. The psychological aspect does take its toll - something not so well addressed nor treated. Also a comprehensive physical therapy rehab program is important. The most dramatic thing I can say is that two days post-op (from the adult surgery) as I lay in the hospital bed with a morphine drip, I knew that the pain in my hip that prompted me to have the surgery was GONE! It was that dramatic. I knew then that I had absolutely made the right decision. Hope this helps. Feel free to ask more questions... 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: Linda Racine Date: Wed, 19 May 1999 21:48:54 -0700 Subject: Re: endoscopic scoliosis surgery Hi Barbara... All I know is what Dr. Blackman told me... that he expected to be doing lumbar endoscopic surgery sometime within the next year. You can see Dr. Blackman's web site at: http://www.scoliosisrx.com/ You will find a link to his email there. He's a very nice man, and answers all his email. 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: Linda Racine Date: Wed, 19 May 1999 21:44:36 -0700 Subject: Re: Referred to a Neurological Surgeon! Crico.... Any evidence you hear one way or the other would be totally anecdotal, so beware. If your insurance company is forcing you to see a neurologist, I would focus on how many long spinal fusions that neurologist has done. Although I've heard of neurologists assisting orthopaedists, I've never heard of one doing a long fusion. (I'm sure it's happened, but it's probably rare.) I would not let any surgeon perform a certain surgery on me, unless they'd previously done a decent number of that specific surgery. 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: MSMRHINES@aol.com Date: Tue, 18 May 1999 02:15:23 EDT Subject: Happy99.exe >:{{ From: Linda Racine Date: Fri, 14 May 1999 08:49:42 -0800 Subject: Happy99 Virus Again :-( Hi Shelly... I believe you have the Happy99 virus/worm. When your system is infected, it sends the Happy99 virus with .... Hello Linda, My system is not infected w/ the virus...I have an updated version of McAfee..this exe never executed on my system and was cleaned for safety the first time this bug came around...there was someone else on the list who had a problem with one of the downloads, don't remember who...might check the archive.. Shelly ______ 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 #1197 ************************* You're reading a composite here: the scoliosis-digest is a daily encapsulation of messages sent to four different mailing lists: scoliosis, scoliosis-medical, scoliosis-child and scoliosis-teens. If you're responding, you can determine which list message above was posted to by looking at the message footer. To post your own email to scoliosis, send it to "scoliosis@ai.mit.edu". To post your own email to scoliosis-medical list, send it to "scoliosis-medical@ai.mit.edu". To post to scoliosis-child, send your message to "scoliosis-child@ai.mit.edu." To post your message to scoliosis-teens, send it to "scoliosis-teens@ai.mit.edu". Be sure to see the scoliosis web page at "http://www.ai.mit.edu/extra/scoliosis/scoliosis.html". 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