From: bounce-scoliosis To: scoliosis-digest@ai.mit.edu Subject: scoliosis V1 #1214 Reply-To: Errors-To: bounce-scoliosis Precedence: bulk scoliosis Friday, 4 June 1999 Volume 01 : Number 1214 Today's subjects for scoliosis, scoliosis-medical, scoliosis-child and scoliosis-teens: Re: Hair Analysis & More ["Sherri" ] Re: Hair Analysis & More [NBiagini@aol.com] Braces [HUMfree@aol.com] Video Tape Request from AHN ["George Luker" ] Re: Hair Analysis & More [RSMVMD@aol.com] Re: Holly scoliosis V1 #1212 ["George Luker" ] [none] [david cordova ] Re: [Linda Racine ] Re: Hey where are you guys????????? [Bratsimba@aol.com] Re: exlurker repents [Nancy Birch ] Re: Braces [Pegclay123@aol.com] Re: Hey where are you guys????????? ["Rachel F." ] Re: chirobase web site [Re: Hair Analysis] [Leah640@aol.com] Re: Hey where are you guys????????? [Jenni Lytle ] Re: Hey where are you guys????????? [Spearsdm@aol.com] Re: ["Patricia A. Cherry" ] Re: Braces [Sima Goldfarb-Rivlin ] Re: exlurker repents ["Patricia A. Cherry" ] ---------------------------------------------------------------------- From: "Sherri" Date: Thu, 3 Jun 1999 08:26:43 -0400 Subject: Re: Hair Analysis & More Dr. Dean (and others interested): Thank you for posting some of the references to the articles on Medline. I had done this the other day, with a brief synopsis of some of the articles, but the post didn't make it to the List. Each person can easily research Medline, though, by typing in the topic they would like to find more information on. If nothing else, it is extremely interesting and can provide additional insight as it helps us become more aware of studies and advances in the medical fields. Regardless of a person's feelings on this treatment or that treatment, I think that these discussions on this List are quite helpful. We should ALL be very thankful for the opportunity this List brings for us to learn more about scoliosis and related problems. Even if we are not interested in hair analysis, or blood testing, or chiropractic, or surgery, this List has raised our awareness that these areas exist, and they can be helpful to many. It is up to each of us to learn as much as we can about every area relating to scoliosis. My son is just one person who has benefited from hair analysis, the supplements, the total treatment program, the Copes brace and chiropractic treatment, the electric stimulation, etc. He is nearly an adult male, and his curves were originally in the 50s and 40s, so his case may be quite different from another's. Just because he has responded well, I understand that it does not mean everyone would. Yet, just one person MIGHT. And if even one person can benefit from something shared here, I think it is absolutely wonderful. I hope everyone will continue sharing their experiences and the research they are doing. We should not let ourselves become "confused" by the research and information that is available, but, rather, allow ourselves to become "aware". Some studies will "prove" this, and other studies will "disprove" it. The important thing is to be aware that problems CAN (not necessarily WILL) exist in some with scoliosis. Therefore, we need to have ourselves checked as thoroughly as possible by a doctor who understands this, and who will continue to monitor our health closely on a regular basis. All the best, Sherri Linsenbach sherril@abac.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: NBiagini@aol.com Date: Thu, 3 Jun 1999 11:35:29 EDT Subject: Re: Hair Analysis & More In a message dated 6/3/99 5:43:31 AM Pacific Daylight Time, sherril@abac.com writes: << We should ALL be very thankful for the opportunity this List brings for us to learn more about scoliosis and related problems. >> I SO agree & would like to take a second to really thank Linda for all her time and herculean effort to ensure that this list is as active and as helpful as it is....if it wasn't for her & Rich, we would not be here. THANKS!!!! ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: HUMfree@aol.com Date: Thu, 3 Jun 1999 12:01:45 EDT Subject: Braces Hi - I am relatively new to this list. My daughter is 14 and was diagnosed a few months ago. She has a 28 degree curve. We have been to Shriner's Hospital in Portland, OR and they recommend a Boston Brace which she will be measured for next week. My question from reading this list is - it seems like many teens who wore a brace ended up needing surgery eventually. I am wanting to hear from anyone who wore a brace and it did indeed stabilize the curve, just my curiousity. Thanks, I enjoy reading the list. Susan ______ 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, 3 Jun 1999 09:06:54 -0700 Subject: Video Tape Request from AHN This is a multi-part message in MIME format. - ------=_NextPart_000_00E8_01BEADA0.6CC3DAA0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable Hello everyone, I did request a video and told them many would be interested from our = scoliosis-medical list. Use the link at the bottom, go near the bottom = of the left column to the Videos/Live Broadcasts button. The scoliosis = tape is not available yet; so I sent a request to the customer service = contact. Warm regards, George and Linda George and Linda, If you are interested in purchasing this surgery on VHS, please go to = the AHN Health Mall. I have included a link below. You can put in a = request for this and they will comply. Thanks again for your response and for = your interest in AHN.COM. Please visit us at http://www.ahn.com for the = latest in health and medical news and information. See who we're chatting = with!! Join us June 16th at 9pm ET for a chat with author Keith Eddleman about = his book Pregnancy for Dummies. Check the chat schedule for more details http://www.ahn.com/cms/templates/Chat/Chat_Display.asp Watch it Live: Baby's Lifesaving Heart Surgery, June 4th at 9am ET. = Click here for more details:=20 http://www.ahn.com/liveevents/openheart2/default.asp Click here for AHN Health Mall: http://commerce.ahn.com/hm/default.asp Emily Operations Coordinator - ------=_NextPart_000_00E8_01BEADA0.6CC3DAA0 Content-Type: text/html; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable
Hello everyone,
I did request a video and told them many would = be=20 interested from our scoliosis-medical list.  Use the link at the = bottom, go=20 near the bottom of the left column to the Videos/Live Broadcasts = button. =20 The scoliosis tape is not available yet; so I sent a request to the = customer=20 service contact.
 
Warm regards,
George and Linda
 
 
George and Linda,
If you are interested in = purchasing=20 this surgery on VHS, please go to the
AHN Health Mall.  I have = included=20 a link below.  You can put in a request
for this and they will=20 comply.  Thanks again for your response and for your
interest in = AHN.COM.  Please visit us at http://www.ahn.com for the latest
in = health and=20 medical news and information.  See who we're chatting = with!!
Join us=20 June 16th at 9pm ET for a chat with author Keith Eddleman about = his
book=20 Pregnancy for Dummies.  Check the chat schedule for more = details
http://ww= w.ahn.com/cms/templates/Chat/Chat_Display.asp

Watch=20 it Live: Baby's Lifesaving Heart Surgery, June 4th at 9am ET. =20 Click
here for more details:
http://www.= ahn.com/liveevents/openheart2/default.asp

Click=20 here for AHN Health Mall: http://commerce.ahn.com/h= m/default.asp

Emily
Operations=20 Coordinator


- ------=_NextPart_000_00E8_01BEADA0.6CC3DAA0-- ______ 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: Thu, 3 Jun 1999 12:20:33 EDT Subject: Re: Hair Analysis & More In a message dated 6/3/99, 11:54:58 AM, NBiagini@aol.com writes: <> I second (or should I say, third) that!!! Richard S. Maryland (about 30 miles outside of Washington, DC) ______ 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, 3 Jun 1999 09:35:35 -0700 Subject: Re: Holly scoliosis V1 #1212 Holly - thanks for sharing so openly. Frankly, I'm having trouble seeing my screen because of the tears. I'm also having difficultly knowing how to respond. I encourage you and others to 'tell it like it is' and to share what's really going on. I think I understand the need to be independent, active, and self determinate. I'm a certified type A personality too. I'm not nearly as driven as you portray yourself; but, I am certainly stubborn, determined, and persistant. I agree with Linda R. and others about your being at risk physically with activities done too soon or even at all. I know the fight within to control the urges and emotions are really difficult. My personal battles are a little different. As the spouse of a major surgery patient, I'm helpless to do much but support and watch. It's a much different role than I'm used to. I've moved from being an active workaholic executive to gofor. By the way, I believe 'servant' to be one of the highest callings; so I'm not complaining. I suspect you are also a servant and helper type too. It must be similar to your and my wife Lindas' change in status from being independent to dependent. Many things I want to do will have to wait. In the meantime, I'm content to do what I can and to share what it's like going through this. You are definitely the kind of nurse I want at my side! I'm praying you find a place in the medical field where you can help people or train others to do so. There's a place for you and it will come when you are ready. Keep on posting and sharing. Love, George and 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: david cordova Date: Thu, 3 Jun 1999 13:42:19 -0700 (PDT) Subject: [none] I want to know if stratining a spine for cosmetic resones is possiable. My curve is 86 degrees lumbar and 86 thoratic. E-mail me back at byby500@yahoo.com _________________________________________________________ Do You Yahoo!? Get your free @yahoo.com address at http://mail.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: Linda Racine Date: Thu, 03 Jun 1999 14:39:38 -0800 Subject: Re: David (byby500@yahoo.com)... It is possible to have surgery for cosmetic reasons, although many doctors would not perform it for only that reason. And, I suspect most insurance companies would not pay for it, if that were the only reason. If in addition to the cosmesis, you have pain, or if your curve is progressing, surgery is certainly an option. I would think it over very carefully before proceeding with surgery. The surgery leaves many people with pain; usually pain that was not present before surgery. Personally, I would not trade off a deformity for a potential lifetime of pain. Best of luck with your journey. 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: Bratsimba@aol.com Date: Thu, 3 Jun 1999 18:59:18 EDT Subject: Re: Hey where are you guys????????? sorry naomi, I have never had sureger, but I hear 4 about a mounth u can't do anything and lay in bed! 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: Nancy Birch Date: Thu, 03 Jun 1999 15:57:32 PDT Subject: Re: exlurker repents Dear All, I think it's about time I introduced myself. My name's Nancy, I'm 54-years old, am married to an Italian physicist and we live in Italy. We have two sons, one is a biologist in Roma at the Scientific Investigations Center of the Carabinieri (they are a branch of the Italian armed forces ): he gets to do all the DNA analyses on criminals and victims. No. 2 son is finishing up his MA thesis on Roman Archaeology at the Univ. of Bologna. I work at home - do translating and lately have begun trying to write articles for fun and profit. And guess what - I have a scoliosis (was 8é-80 and is now around 50-50). And, (blush), I have been lurking for almost a year. Was really shy to write as I have had 6 procedures (in 1977, 78, 79, 81, and 93), worke body casts on and off for nearly three years and now have a heavy moulded plastic corset. And am still in trouble: pain, sciatica, you name it. I was a little embarrassed to tell my story - also feared it might demoralize a lot of people who have to go in for a second or even third revision ... But reading about all your wonderful results gave me first the courage to see an Italian doctor (after two years of not going near an orthopedist) who of course immediately said all the previous doctors had messed up and my only hope was to remove the Harrington rods that go from T4 to L3 and the C-D apparatus that goes from L3to S1 and then do an anterior fusion at L4-L5 where I have a pseudoarthrosis. Since in one of the revisions they removed the top rods and everything collapsed (so they put them back in - I think that was revision number three) I was not interested. To make a long story short, since I'll be visiting a friend in DC in a couple of weeks, I said to myself, "go for it" and called Dr. Kostuik thanks to your strong recommendation of him, and of course there was chance for an appointment so soon - but the secretary was very helpful and we talked about my coming over in October to see him. They also gave me the name of a French surgeon who is a good friend of theirs - I could never afford surgery in the States but my Italian National Health Insurance covers surgery done in European Community countries. So even that info was something. You can't imagine how help even this little step, and I repeat, all thanks to your positive cybervibrations, was for me. And then the secretary emailed me today and said that a spot had come free so I'll be able to see the doctor after all on June 23. What a piece of luck!I am absolutely thrilled. I have been essentially vegetating since the last fusion didn't fully take and all I really need is a consultation so att least I can get a few things clear in my mind. I know so many of you have been wandering about in the dark - as I have - but now I see some light. There's nothing like hope! And this is due to all of you - you have been so brave and uncomplaining and generous with information. One doesn't feel alone. So thanks for the courage you gave me to make that phone call. I hope Holly decides to take it easier (one of the reasons one of my surgeries went bad is that I climbed a piece of Mt. Blanc in a body cast - so I know something about overdoing - talk about stupid. But it was beautiful). And I now I can't wait to get to my computer at night to hear the latest episode in Linda's story - really the two of you merit the Oscar for couple of the year. I think I am blathering and that it's time to sign off. I'll be here until Monday night - Tuesday I fly to Michigan to see my brothers and aunt and uncle and then go to DC to visit with old college friends. And the day before I leave, I'll see Dr. Kostuik. I'll keep you posted (but will try to be briefer). If anyone's planning a trip to Italy let me know. I work and at the moment have very limited movement due to the back, so can't be much of a tour guide, but I speak the language and can give tips on places to stay and neat things to see. Well, that's it. I am now officially an ex-lurker. Best wishes to you all and goodnight (it's past midnight here and I'm turning into a pumpkin). Nancy from Parma ______________________________________________________ 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: Pegclay123@aol.com Date: Thu, 3 Jun 1999 19:21:14 EDT Subject: Re: Braces In a message dated 99-06-03 12:12:31 EDT, you write: << My question from reading this list is - it seems like many teens who wore a brace ended up needing surgery eventually. I am wanting to hear from anyone who wore a brace and it did indeed stabilize the curve, just my curiousity. Thanks, I enjoy reading the list. Susan >> Susan, We don't have long term results since my daughter was only diagnosed at 5, but she is now 8 and with a combination of treatments, bracing, nutrition program, exercise program, chiropractic, and addressing neuro issues, her curve went from 40 degrees to 14 degrees. The reason you don't hear from those whose curve has stabilized by bracing is that they no longer have a need for a support list. The universal truth about internet support groups is that you typically find the very worst cases. I am on a couple of these lists due to Cancer in a nephew, and neuro and scoliosis issues with my daughter, and this is the case on all 3 of them. The success stories move on with their lives and are not heard from on the list. Don't conclude that they are not out there though. Bracing is the most accepted course of treatment for a curve of 28 degrees from everything that I have read and on this list you will probably receive sites to research this issue. From our personal experience the bracing is well worth the inconvenience if it can prevent the need for surgery. Good luck to you. Post your questions, the group is very helpful and informative. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Rachel F." Date: Thu, 03 Jun 1999 20:10:05 -0400 Subject: Re: Hey where are you guys????????? > sorry naomi, I have never had sureger, but I hear 4 about a mounth u > can't do anything and lay in bed! This isn't really true! I am having surgery in three weeks and I've done a lot of research on it. For about two weeks (one in the hospital) you probably don't feel like doing anything but resting. After two or three weeks, depending on how you feel, you can get up, move around, do things. I've talked to many people who've had this surgery and they've all said that. - -Rachel- 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: Leah640@aol.com Date: Thu, 3 Jun 1999 20:59:21 EDT Subject: Re: chirobase web site [Re: Hair Analysis] thank you Richard, I will pass it on to Rebecca. Leah ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Jenni Lytle Date: Thu, 03 Jun 1999 17:32:42 PDT Subject: Re: Hey where are you guys????????? sorry that is false information about you can only lay in bed for 4 months it is more like the first week, but you are still made to walk by the nurses and then once you get out of the hospital you will get better really fast. >From: bratsimba@ai.mit.edu >Reply-To: scoliosis-teens@ai.mit.edu >To: Naomi@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-teens-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Spearsdm@aol.com Date: Thu, 3 Jun 1999 21:32:54 EDT Subject: Re: Hey where are you guys????????? The week I was in the hospital all I felt like doing was sleeping. The nurses made me walk though 5 times a day. Then when I got home I did a lot of things besides lay in bed. I walked (in and out side). I also watched TV and talk on the phone a lot. There are a lot of things you can do when you are right out of the hospital, I had to give my 10 cents worth on the subject. Bethany 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: "Patricia A. Cherry" Date: Thu, 03 Jun 1999 22:29:55 -0400 Subject: Re: David, I requested to have the 1st fusion surgery more for cosmetic reasons than medical reasons. I so wanted to get rid of my rib hump and "hunch back" appearance. My curves were equal 45 degree curves. My doctor wanted me to have the surgery because I had kyphosis - otherwise he would not have done the surgery since I was so even and in no pain. While it is true I have suffered pain since the initial surgery and have had to undergo revision surgery I would still make the same choice even if it was for cosmetic reasons only. Thinking of you, 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: Sima Goldfarb-Rivlin Date: Fri, 4 Jun 1999 06:09:08 +0300 Subject: Re: Braces Hi Susan, My daughter is currently being weaned from her brace, which she wore religiously 23 hours a day for a year. At her next Dr's appointment in August after being without the brace for 2 months, they will x-ray and we will know more. So far her curves have not progressed. Keeping our fingers crossed. Sima ><< My question from reading this list is - it seems > like many teens who wore a brace ended up needing surgery eventually. I am > wanting to hear from anyone who wore a brace and it did indeed stabilize the > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Patricia A. Cherry" Date: Thu, 03 Jun 1999 22:38:01 -0400 Subject: Re: exlurker repents Nancy, I was very enriched from hearing your story. It reminds how much I need to count my blessings for having such easy access to my surgeon. You are an inspiration to me, as I guess I am a fledging since I have only had one revision surgery. I will keep you in my thoughts. Good luck with your dr's appointment. 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". ------------------------------ End of scoliosis V1 #1214 ************************* 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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