From: bounce-scoliosis To: scoliosis-digest@ai.mit.edu Subject: scoliosis V1 #1064 Reply-To: Errors-To: bounce-scoliosis Precedence: bulk scoliosis Tuesday, 5 January 1999 Volume 01 : Number 1064 Today's subjects for scoliosis, scoliosis-medical, scoliosis-child and scoliosis-teens: RE: holidays! [Karen Pilmer ] RE: skin problems with the brace [Karen Pilmer ] Charleston Bending Brace [Karen Houston ] Re: holidays! ["Chris and Amy Nylander" ] Article [Kathleen McCrea ] Article [Kathleen McCrea ] Re: Iron [RBerk1382@aol.com] Re: Iron [RBerk1382@aol.com] Re: holidays! [Joel M Smith ] finding a doctor ["Allison A. Hicks" ] Re: pillows to school [richa@softcom.net] Re: Spray & Diapering a casted boy. ["Mary Kirkpatrick" ] [Fwd: Charleston Brace] ["Elizabeth E. Harris" ] Re: Charleston Bending Brace [LavenderHW@aol.com] Re: Iron [Jo MacAleese ] Re: Iron [Jo MacAleese ] Traveling with a Cast [pbuxton1@pineland.net] Re: Iron [Jo MacAleese ] HarringtonRods and after effects [Christina Mykituk ] Re: Charleston Bending Brace [Pegclay123@aol.com] Re: Iron [larwajj@iland.net] Re: [Fwd: Charleston Brace] [larwajj@iland.net] Re: holidays! [Pegclay123@aol.com] Anterior surgery [DianePinewood@webtv.net (diane)] Stephanie ["Paul Pesanka" ] Re: Iron ["Georgina Van Horn" ] Re: Iron [RSMVMD@aol.com] Re: Anterior surgery [Linda Racine ] Recovery of body & spirit ["wigham" ] muscle spasms and nerve sensations ["wigham" ] ---------------------------------------------------------------------- From: Karen Pilmer Date: Mon, 4 Jan 99 07:23:30 -0500 Subject: RE: holidays! ===== Original Message from Chris and Amy Nylander at 1/01/99 3:40 pm >Hi , > >I just subscribed a couple of days ago. My thirteen year old son was at > ... ===== Comments by Karen@snavely.com (Karen Pilmer) at 1/04/99 7:13 am Hi Amy My daughter is 11 and was diagnosed in June with a 27 Thoracic and a 35 degree Lumbar curve. We were told to wait and see also. By November she progressed to 30 degrees in the Thoracic and was braced. Unfortunately her scoliosis is rapidly progressing and she is now 36 degrees! We had her brace adjusted last Thursday and return to the Dr. in April. Everything I have read agrees with the wait and see attitude. Bracing is a line of treatment that you don't want to jump into. It is hard enough to be a teen without adding a brace to everything else. Your Dr. will advise periodic x-rays to monitor the progression. 9 degrees is a very livable 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: Karen Pilmer Date: Mon, 4 Jan 99 07:42:33 -0500 Subject: RE: skin problems with the brace ===== Original Message from Horváth István at 10/22/99 4:30 pm >This is the first day I received the digest of this scoliosis mailing list, and first of all I wish good health and a happy new year to everybody. I am the father of a 10 year old girl with scoliosis, a newcomer and learner in this field. Of the many problems overwhelming >us, now I need your help in one: what kind of skin and muscle problems will come from the contact with the brace, and how those of you wearing a brace have avoided them. I think her brace is Boston type, made of one piece of plastic. At one site I red rubbing alcohol after bathing would >help, but that somehow does not sound well to me. >István >hi@mail.matav.hu ===== Comments by Karen@snavely.com (Karen Pilmer) at 1/04/99 7:36 am I am also a newcomer to this field. My 11 year old daughter began wearing her brace in November. She was advised to use the alcohol and corn starch skin treatment method. She has had no problems so far. She has the same kind of brace your daughter has. We found that mens "A" shirts work very well under the brace and believe it or not, they are a fraction of the price of womens "T" shirts. As far a muscle problems go, the only thing we have seen so far is a decrease in the muscle tone in her upper chest area. We needed to have her brace cut down an inch or so. She has been given exercises to do to avoid the loss of muscle, but she hardly ever does them. Good luck to you. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Karen Houston Date: Mon, 04 Jan 1999 09:00:22 -0800 Subject: Charleston Bending Brace My daughter has been wearing the Charleston Bending Brace for 9 months now. She has a 29 deg. lumbar curve and so far it hasn't progressed. She goes for another check-up and x-ray in April. I hope the curve hasn't progressed. She has grown a couple inches since wearing the brace, but so far the curve hasn't progressed. We are keeping our fingers crossed. Would the doctor not recommend a Milwaukee or Boston brace before doing surgery? We were told that if the curve progressed, she may have to wear a brace all day long and see if it helped, before opting for surgery. Good luck at her upcoming appointment. Karen Houston ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Chris and Amy Nylander" Date: Mon, 4 Jan 1999 11:59:19 -0600 Subject: Re: holidays! Hi Karen, Thanks for your response. How often would you recommend getting x-rays? I couldn't agree with you more about adding a brace to all the other teenage traumas. It seems the key here is just sticking at 9 degrees. Have you read anything about the need to carry a backpack on both shoulders? I've been nagging him forever, but I'd love to know that there's a direct correlation of some sort. Thanks again for taking the time. Happy New Year! ~Amy in MN - ---------- > From: Karen Pilmer > To: Chris and Amy Nylander > Subject: RE: holidays! > ... at > 1/01/99 3:40 pm > >Hi , > > > ... the > >right. The MD ordered back x-rays. I got a verbal report from the > >radiologist via the nurse on Thursday that the curve was nine degrees. She > >said they "don't do anything until it's 20 degrees." So 9 degrees, I > >think, is good news. > > > ... guys, > >the real experts, is what should I be sure to ask the MD when we talk? > >What is a reasonable course of action from here? > > > ... > progressed to 30 degrees in the Thoracic and was braced. Unfortunately her > scoliosis is rapidly progressing and she is now 36 degrees! We had her > brace adjusted last Thursday and return to the Dr. in April. Everything I > have read agrees with the wait and see attitude. Bracing is a line of > treatment that you don't want to jump into. It is hard enough to be a teen > without adding a brace to everything else. Your Dr. will advise periodic > x-rays to monitor the progression. 9 degrees is a very livable 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: Kathleen McCrea Date: Mon, 04 Jan 1999 12:11:44 -0600 Subject: Article There is an interesting article on the Medscape site regarding the relationship between Scoliosis and Osteoporous. Kay ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Kathleen McCrea Date: Mon, 04 Jan 1999 12:13:05 -0600 Subject: Article There is an interesting article on the Medscape site regarding the relationship between Scoliosis and Osteoporosis.. Kay ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: RBerk1382@aol.com Date: Mon, 4 Jan 1999 13:32:10 EST Subject: Re: Iron Jo-- Allison mentioned something I think called Procrit that would increase the production of red blood cells. Take heart, and forget about the liver and apricots. When I was donating I was unable to do so for a few weeks. Then my hemoglobin came back up. It can really go down from 1) donating, and 2) menstruating. You will not increase your hemoglobin from diet, it will just make you fat. Keep up the supplements, and see about the meds that Allison takes. Good luck. Roberta ______ 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: RBerk1382@aol.com Date: Mon, 4 Jan 1999 13:38:10 EST Subject: Re: Iron Jo: Janet recommended iron skillet, etc. Forget it. I have worked in the Endocrinology Department of a major NY Hospital and was assured by the docs who care for children that they never bother with diet because the amounts you can get are too minimal to count. Roberta ______ 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: Joel M Smith Date: Mon, 04 Jan 1999 15:30:53 -0500 Subject: Re: holidays! This is a multi-part message in MIME format. - --------------78A7C112E2DB73D3F1D5FE2A Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit I have worn my backpack on both shoulders for several years now, and did not develop scoliosis until 11 months ago. I can't speak for everyone, but I know that it has not had any effect on me! Chris and Amy Nylander wrote: > Hi Karen, > > Thanks for your response. How often would you recommend getting x-rays? I > ... - --------------78A7C112E2DB73D3F1D5FE2A Content-Type: text/x-vcard; charset=us-ascii; name="vcard.vcf" Content-Transfer-Encoding: 7bit Content-Description: Card for Smith, Joel Content-Disposition: attachment; filename="vcard.vcf" begin: vcard fn: Joel Smith n: Smith;Joel org: Rose-Hulman Institute of Technology adr;dom: Box 872;;5500 Wabash Ave.;Terre Haute;Indiana;47803; email;internet: Joel.M.Smith@rose-hulman.edu tel;home: (812)877-8819 x-mozilla-cpt: ;0 x-mozilla-html: FALSE version: 2.1 end: vcard - --------------78A7C112E2DB73D3F1D5FE2A-- ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Allison A. Hicks" Date: Mon, 4 Jan 1999 15:55:05 -0600 Subject: finding a doctor Hello all, I am new to this list and would like some input on your experiences with physicians who specialize in (pediatric) scoliosis, particularly of an neuropathic origin (cerebral palsy). I live in Wichita, Kansas, but am willing to travel to the surrounding states to find the best doctors. Has anyone had any experiences (good or bad) with docs in Kansas, Oklahoma, Missouri, or even the Dallas/Ft. Worth area? My 9 year old daughter, Marcelle, (who has spastic quad cerebral palsy) was recently diagnosed with a 45 degree (lumbar) curve. She had orthopedic surgery (lower extremities) this summer at Gillette Hospital (St. Paul, MN) (Dr. Tom Novacheck), but with the scoliosis, I am sort of afraid for her to have a potential surgery so far away from home in case there are complications afterward. Does anyone have feelings or insight on this subject? The orthopedic surgery didn't seem as life-threatening as scoliosis surgery. I would greatly appreciate any input. Thanks in advance. Allison Hicks ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: richa@softcom.net Date: Mon, 04 Jan 1999 13:35:53 -0800 Subject: Re: pillows to school Bethany, Hi! My name is Sharece. In never did have surgery, but when I first got my brace I carried a pillow around with my from class to class. I stopped after about 2 weeks. It got kinda embarassing and hard to carry around with all of my books. Sharece A. 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: "Mary Kirkpatrick" Date: Mon, 4 Jan 1999 13:52:12 -0800 Subject: Re: Spray & Diapering a casted boy. Hi everyone and Happy New Year I called Sunshine Products and they are sending me some 'In Between. Their number is 314-965-6006. It is $2.03 for 8 ozs bottle. I'll let you know how it works. Thanks Margie. Mary (Ben's mom, 18 months, 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: "Rachel Freedenberg" Date: Mon, 04 Jan 1999 15:00:39 PST Subject: Re: HELLO EVERYONE Good luck, Auna! I will be thinking of you! I am having surgery, too, probably this spring, and I'd like to hear from you what it's like (when you're feeling up to it). Everything will be fine, and good luck!!! - -Rachel- ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.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: "Elizabeth E. Harris" Date: Mon, 04 Jan 1999 18:10:08 -0500 Subject: [Fwd: Charleston Brace] Message-ID: <36914406.33B8@algonquinc.on.ca> Date: Mon, 04 Jan 1999 17:43:18 -0500 From: "Elizabeth E. Harris" Organization: Algonquin College X-Mailer: Mozilla 3.04Gold (Win95; I) MIME-Version: 1.0 To: scoliosis-teens@ai.mit.edu Subject: Charleston Brace Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit I am looking for some discussion on the Charleston Brace. My 15 year old daughter has started wearing it to stop a curve progression that is at 30 degrees presently. She has not yet been back for a recheck since she began with the brace. I am wondering about the success rate for these with respect to stopping advancement of the curve and preventing surgery. I do not feel optimistic about the brace and am wondering if we are putting her through wearing it with the inevitable still happening. We need to give it a try but in my heart I am not feeling good about it. I have read pros and cons and have discussed these with her Doctor who has been involved in a research study with these braces and agrees with their use for certain types of curves. He of course, cannot give any guarantees. My daughter is a competitive swimmer so to have spinal fusion and instrumentation would be devasting with respect to her swimming hopes, plans, and dreams for the future. Any comments would be appreciated. ______ 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: LavenderHW@aol.com Date: Mon, 4 Jan 1999 19:05:19 EST Subject: Re: Charleston Bending Brace Karen- Thank you. Please e-mail me in April to see how her appointment went. I hope all goes well! And thanks again! Holly Worrell ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Jo MacAleese Date: Mon, 04 Jan 1999 17:47:21 -0600 Subject: Re: Iron Roberta - Procrit is not for me - sad to say. We are now working with directed donations to see if we can get the amount needed from the stable (we know their background) friends we have. I'm going to try again on Friday --- if not able to donate then, I quit. Ugggg. I never thought this would turn into such a fiasco! Thanks for all the advice and suggestions. Your help and concern means a lot to me. Jo ______ 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: Jo MacAleese Date: Mon, 04 Jan 1999 18:39:35 -0600 Subject: Re: Iron Dear Courtney - Thanks for the multiple suggestions about the iron problem I'm having. I was doing one of the things wrong, and have made corrections! Regards, Jo ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: pbuxton1@pineland.net Date: Mon, 04 Jan 1999 19:44:22 -0500 Subject: Traveling with a Cast My son Aaron is looking at spinal fusion surgery for two different hemivertebrae/congenital scoliosis this coming spring. The doctor wants to put him in a cast from the neck down to about mid-thigh to discourage him from walking. I'm interested in any experience some of you have had with these types of casts as far as the child getting around (*will* he be completely unable to walk for 4 months?) and how you're supposed to get him in a car seat! Does this mean we won't be able to leave the house for 4 months?! Penny ______ 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: Jo MacAleese Date: Mon, 04 Jan 1999 18:37:20 -0600 Subject: Re: Iron Janet - Thanks for the suggestion! Regards, Jo ______ 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: Christina Mykituk Date: Mon, 04 Jan 1999 17:05:16 -0800 Subject: HarringtonRods and after effects Hi Linda...welcome to the list! I've been recieving it for a while, and find it really helpful! I had CD rod surgery 9 years ago, and a revision 7 years ago, as well as I've been involved in a car accident. I now have really bad neck aches and pains, as well as sharp pains and aches in the shoulder and scapula region, aside from chronic pain throughtout the back. I've been back to specialists several times, and the best thing for it is light exercise and stretching... I also love going to massage therapy! I've experienced a lot of different forms of treatment - physio, antidepressants for chronic pain, and I find that the massage, light stretches that were given to me by a exercise specialist, and antiinflamatories when it's really bad works best. They've thought of rod removal or extension at one point, but it is uncertain if it would create any benefit, if not make things worse. I have chronic pain, and I found that the best relief ever was when I was following a special exercise program - it didn't relieve the pain, but did make a world of difference! I think it's important to realize that each case of scoliosis is different with different effects, and you may find something completely different that works for you! Take care of yourself ! Christina ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Molly Peters" Date: Mon, 4 Jan 1999 17:54:23 -0000 Subject: Iron again Dear Jo, So sorry about the trouble with your donating blood. I totally understand your anxiety about it- it was a huge stressor for me as well. If you have good friends who are a match, then go for the directed. You certainly don't need any added stress now. However, I must disagree with the notion that your diet has little impact on your Hct, so I wouldn't totally give up. I drastically changed my dietary habits to donate, and took the iron supplement 3 times a day. As a result, I was able to give 8 units in 2 months, with a (low) starting Hct of only 37. The blood bank nurses said no patient there had ever been able to give more than 3 autologous units, and believed my diet had a lot to do with it. Maybe I was just lucky... and I guess we all believe in what works for us! Best of luck Friday! molly ______ 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: Pegclay123@aol.com Date: Mon, 4 Jan 1999 21:11:15 EST Subject: Re: Charleston Bending Brace How old is she? I would think that before trying surgery they would look to an 18 to 23 hour 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: larwajj@iland.net Date: Tue, 5 Jan 99 02:13:16 +0000 Subject: Re: Iron Jo, I am not sure what you are talking about but I suspect that you are trying to donate for your own blood. If so my son did donate 4 units of his own blood and we had three others donate. He had to take 900MG of iron a day and ate brussell sprouts and brocckli galore. Knowing that Iron tends to constipate we gave him colace once per week as it was really stong for him. It really helped. Plus we ate alot of steak (not hamburger). I don't know if this will help you or not or if this was the subject at all. Hopefully it was correct. Wanda ______ 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: larwajj@iland.net Date: Tue, 5 Jan 99 02:23:09 +0000 Subject: Re: [Fwd: Charleston Brace] Elizabeth: I do not have information on the charleston brace but my son at age 15 wore the boston brace. His curve was 30 and it held for about 4 months. He thought the brace was suppose to straighten his back and when it did not improve the curve gave up. Our information on the bracing method for scoliosis was not made too clear and we were kind of confused. Now I do know that the brace is worth it of any nature. Anything you can try is always beneficial. Our son's back curved from 30 last december to 45 this december and ultimately now he wears rods. Our Dr. said one of the best excersies is swimming and walking. So don't get too discouraged about the brace even if it fails. We tried too and sometime you can't control. If she complys 100% then it may work and may not work. The ultimate goal is to get the child to skeleton maturity in hopes the brace then holds the curve to that degree. The body at maturity will take over and hold it there. That's what we have learned after the fact. My son's surgery was December 15th and his back is wonderful. He feels wonderful just like everyone said. I can't imagine letting him go thru life curved like he was and the hump on his back. His posture looks wonderful and you can't hardly tell that he has had surery. The only thing I can tell you is the scar is and will be minimal. Just have to be careful with the sun at first. Our Dr. is wonderful and very knowledgable on this sort of thing. The object was to do the surgery before the student got too much farther progressed and got too old. He is a sophomore and it was ideal to do the surgery now because it left the junior and senior years open for healthy and enjoying. Well, Hope this helped and if you want, e-mail me personalbly if you want. Wanda ______ 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: Pegclay123@aol.com Date: Mon, 4 Jan 1999 22:16:23 EST Subject: Re: holidays! I agree that 9 degrees is a curve that if it doesn't progress should not cause any serious problems. Rather than just wait and see however, maybe ask for excercises that strengthen the back muscles? This is a positive step that in any case cannot hurt, can likely help support the spine and maybe help avoid further progression. Also watch your sons nutrition and see that he is getting balanced meals of whole foods. Have him reduce soda pop and other overly processed foods that are so popular with kids and that rob the muscles, bones and energy from them. Watching nutrition and excercise at least you will know that you are doing what you can to avoid further problems and your son can only benefit. If he is already good about nutrition and exercise than you are already doing everything you probably need to do with a curve of only 9 degrees. Unless you want to check with a good chiropractor to see if there is a simple problem that adjustment may 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: DianePinewood@webtv.net (diane) Date: Mon, 4 Jan 1999 23:01:37 -0500 (EST) Subject: Anterior surgery Thanks for recent informative posts, from shoes to iron . I have questions regarding the types of surgery for scoliosis fusion. I recall reading comments on the list about doctors' recommendations for surgery. It seems each new doctor's consult may bring a different recommendation-- posterior, anterior, or both. Advice has been given that your choice of surgeon is paramount, and you follow his recommendation. I first had a recommendation for posterior, and possibly a/p, after further testing. The next doctor recommended a/p initially. I feel that the less surgery one must have, and the shorter the fusion, the better. My doctor reviewed my records and decided I would do well with a selective lumbar anterior fusion. Because of my flexibility, the compensatory thoracic curve should self-correct about 50%. I also have good bone density for my age (55). I would be interested in hearing any comments anyone has regarding the types of surgery, especially if you have had anterior only surgery. If you had to have a/p surgery, what were the reasons that necessitated a/p instead of a single surgery? Does anyone else feel that the surgery decision making for scoliosis is very "patient-heavy"? So many other procedures seem more cut and dried in terms of having surgery. Or do other surgery candidates also question whether they REALLY need it? Thanks for your input. Sending wishes for a HAPPY HEALTHY NEW YEAR! Diane ______ 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: "Paul Pesanka" Date: Mon, 4 Jan 1999 22:59:37 -0500 Subject: Stephanie Our daughter, Stephanie, has worn a Boston Brace for the last 2 years. She has progressed from a 24 degree curve to a 48 degree curve. (29 to 48 in one year due to a growth spurt!) As we plan for surgery, has anyone had experience with Dr. W. Timothy Ward at Children's Hospital in Pittsburgh, PA? We have been told by our PCP that he is tops in our area. He seems to know his stuff. Any info would be appreciated. Thanks. Marilyn ______ 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: "Georgina Van Horn" Date: Mon, 04 Jan 1999 20:09:02 PST Subject: Re: Iron Jo, Thanks for replying so quickly. So glad you are on your way to a much better life. Your Dr. sounds great and with the confidence you have in him it will all go smoothly. So sorry about all the trouble you're having with giving blood. I had to give 6 units last time and in addition needed 3 more. You're doing all you can and having family and friends give is super. These days there is so much screening that having to take from an unknown donor is not too risky. Still knowing where it comes from helps. I understand your being real busy right now. A month goes by quickly and then you will be on your way to recovery. I'll be thinking of you and keeping in touch. Georgina ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.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: RSMVMD@aol.com Date: Mon, 4 Jan 1999 23:16:13 EST Subject: Re: Iron Jo, Have you contacted the Red Cross in regard to foods that are high in iron? If not, give them a call. Maybe they can fax you the list. I got an extensive list from them during the time that I was donating blood for my surgery. I don't have the list currently available; however, I do remember Cream of Wheat and Pistachios being very high in iron. Hope this helps, and good luck with your surgery!! Richard S. ______ 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: Mon, 04 Jan 1999 20:58:29 -0800 Subject: Re: Anterior surgery Hi Diane... My belief is that it's almost impossible for an untrained patient to judge which type of surgery is best for themself. First, each case is very unique. Secondly, scoliosis specialists have the experience of lots of cases, with both good and bad outcomes. I would not want to encourage a doctor to perform one type of surgery if they felt that another type would be a better alternative. I understand why one would think that the less done, the better. I've talked to other people who felt like you do. Personally, I would not want to go into surgery with the knowledge that there would be a good likelihood that additional surgery would have to be done in the future. I had the option you discussed. My surgeon thought that my thoracic curve might self correct if he fused the lumbar curve. He assured me that if it didn't, however, I would be have to go back for more surgery. I was actually unhappy that he gave me options. I felt there was no way I could educate myself enough to ever feel I made the right decision.) I agree with your assesment that recovery seems to be quite a bit easier for people with shorter fusions. I think we just differ on which is the lesser of two evils. :-) I've said this before, but I believe in it strongly. Your best bet is to find a surgeon whom you can trust, then let him/her do what they feel is best. 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: "wigham" Date: Tue, 5 Jan 1999 00:28:44 -0500 Subject: Recovery of body & spirit Dear All fellow seekers; Thanks you so much for your replies it gets depressing if no one out there connects to your problems it makes you feel alone. I am now 11 weeks post op and I do have some pain but it more or less sneaks up on me if I don't take my meds regularly. I take some narcotics which I am weaning myself off from over the next two weeks. The good med for neuro pain is "Neurontin" it really does block most of the nerve pain which I suspect is now most of my pain in my left hip/back and leg. The drug makes you flaky for the first week after that you are normal again since your body becomes use to it. I suggest everyone on these list suffering pain try this for a month the doses can be as low as 100mg/ 3x a day or 300mg/ 3x day which is what I am doing to keep the owies and the aches of my left leg in check. It's interesting how I have much more neuro pain in my left leg than before surgery. Well we shall see what is said when I go for 2nd follow up Jan 21 with Dr.. Kostuik at Johns Hopkins in Maryland. I feel they have the best ortho dept.. I start walking on my treadmill tomorrow as ordered by my doc. but of course ins. wouldn't pay so it was a very expensive Xmas gift to myself and my hubby. Walking for the back surgery is sooooo important in terms of moving along and recovery. There are days that if I go out shopping with the aid of a friend for 3-6 hours I am physically crashed for the next day and lay in bed and rest. I let my body dictate my life right now. My 5 and 3 yr. old are at daycare until end of Jan. when I hope to be able to keep awake all day to be with them. I am a stay at home mommy. I realize I am fixed for life I hope and my mind is racing with possibilities and things I want to do. I am going to start writing them down. I think a journal right now is what I should do. I pray every day for God to have mercy upon me and to heal me physically and spiritually. I am an Orthodox( Russian/Greek type) Christian. I pray that "we all" accept His will and we get better so that we are better brothers and sisters to each other in His name. Even just a smile can change the world for some person. I thank you again for your caring. I just started replying and reading everything since the Oct. surgery I've had double blurry vision to deal with as well since I awoke from surgery. But thankfully it seems to be getting better. Blessings for a fruitful and healthy new year and life. Feel free to contact me personally at my e-mail too. My deepest regards Kathleen KW. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "wigham" Date: Tue, 5 Jan 1999 00:44:22 -0500 Subject: muscle spasms and nerve sensations What has worked for me is valium to stop my legs and/arms from "jumping" and Neurontin taken regularly. When the leg spasms were so severe that my legs were jumping wildly off the bed even the nurse couldn't hold my legs still, I took 10 mg valium and 30 mg roxicodone (narcotic) took 20 min utes to work but did the trick. I say to keep 5 mg tabs on valium on hand for those nights your musles prefer to play then rest. That dose is so low I don't think you would become addicted to it but it just makes those muscles relax a bit or ask your doc for muscle realxers to keep on hand for those rough days/nights. I feel better knowing I have something in the medicine cabinet for backup just in case. Even though I still have painful moments those hours are far better then the daily excruciating pain I experienced pre-op. Be blessed by Him and well wishes for a joyful life. Kathleen KW ______ 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 #1064 ************************* 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". 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