From: bounce-scoliosis To: scoliosis-digest@ai.mit.edu Subject: scoliosis V1 #825 Reply-To: Errors-To: bounce-scoliosis Precedence: bulk scoliosis Wednesday, 13 May 1998 Volume 01 : Number 825 Today's subjects for scoliosis, scoliosis-medical, scoliosis-child and scoliosis-teens: Re: cosmetic results ["Kim Daniels" ] Re: Daughter's complication w/ surgery [Elizabeth Mina ] Re: cosmetic results [Elizabeth Mina ] Evoke Potentials Monitoring [Robert Holloway ] hi everybody! ["Linda Eriksson" ] Re:Spoke to Crystal Dr. today........ [Lilbit0603 ] Re: I have a different question...Re: Scoliosis & Car Types [Bogima ] Incision question ["carol lytle" ] Re: Cars [Jessie Deyoe ] Re:last-minute surgery tips? [jdonathan@smtplink.ag-inc.com] please resend [DLCBH ] To Wendy [jdonathan@smtplink.ag-inc.com] Re: Re:last-minute surgery tips? ["Gail Walsh" ] Re: last-minute surgery tips? [Lilbit0603 ] Re: WHAT I HAVE LEARNED... ["Ruth Andrick" ] Re: WHAT I HAVE LEARNED... [DLCBH ] Re:Spoke to Crystal Dr. today........ [Rugrat ] [none] ["Dean A. Hoppenrath, DC" ] Re: Hi Everyone! ["Katherine Parrish" ] Re: hi everybody! [Pegleg6305 ] Re: Studies on Genetics or other Causes for Scoliosis [Pricego ] Thanks everyone! ["Rachel Freedenberg" ] hello [scomilbrce@juno.com (Jean A Stef)] HI [scomilbrce@juno.com (Jean A Stef)] Sitting in cars, planes, trains ["Cyndi King" ] Re: HI [Linda Racine ] Re: Incision question [Lee Latour ] Re: Daughter's complication w/ surgery ["Glenn S. Burke" ] Re: Thanks everyone! [Lee Latour ] Re: Hi Everyone! [Mercy106 ] Re: Thanks everyone! [Mercy106 ] Re: Thanks everyone! [richa@softcom.net] Long time no see ["Arinya N. Janes" ] Re: last-minute surgery tips? [Michelle Ewing ] hmc's 2nd (etc.) opinions [hmc ] hmc's 2nd (etc.) opinions [hmc ] Re: hmc's 2nd (etc.) opinions [Linda Racine ] ---------------------------------------------------------------------- From: "Kim Daniels" Date: Tue, 12 May 1998 04:24:19 PDT Subject: Re: cosmetic results I'm sorry I don't know the "numbers" on my rod....but I know I have 3 vertebrae that are NOT fused at the base of my spine which leaves me with good mobility. I was a cheerleader in Highschool 2 years after surgery...I also took 2 years of dance after surgery. The only thing I have noticed that I really can't do is bend backwards or cartwheels. But than again, I never was good at cartwheels anyway! :o) Yes, I can touch my toes. Like I've said before, no one knows my problem unless I tell them. And I have not had my curve measured in 17 years (that's how long it's been since I've seen a Dr. for my back) but last measured, it was corrected to 32 degrees and I believe the bottom was corrected to 18 degrees. I still have the rod in with no problems. No severe pain. Hope I've helped. Kim ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.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: Elizabeth Mina Date: Tue, 12 May 1998 08:40:09 -0400 Subject: Re: Daughter's complication w/ surgery Robert's very frightening story about his daughter's fusion reminds us just how high risk spinal surgery is in every case, in spite of the surgeon's expertise and experience. I hope with my whole heart that she continues to improve until no one would ever know there was a time when her ability to stand & walk was in jeopardy. Elizabeth Robert Holloway wrote: > First, let me say that we surely enjoy our '98 Chevy Malibu-- > we call it the scoliosis mobile (we have found that humor sure > helps cope with the condition of scoliosis). Our daughter is > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Elizabeth Mina Date: Tue, 12 May 1998 08:59:53 -0400 Subject: Re: cosmetic results It sounds like you have never had surgery for your curvature before. In any case, the consensus of people on this list seems to be that you should get at least 2, if not 3 opinions from spinal surgeons who specialize in scoliosis, especially ADULT scoliosis, if possible. This is really important, so even if you have to travel or take time off from work or spend money you don't think you have, think again. After all, it's the rest of your life you're contemplating. Every doctor has a different plan & uses different techniques & hardware, so you must see all of your options. The scoliosis people with longer-lasting success rates on the list appear to be the ones who have the least possible number of vertebrae fused, with no involvement of the vertebrae at waist level or to the sacrum--so if a doctor talks about being conservative like that, it might be a positive sign. Yes, it's much more difficult to recover from a large operation like this when you're older, but if the quality of your life is as poor as you seem to indicate, that's a strong consideration. There are many people who are thrilled with the results of their fusions later in life; unfortunately, there are also the unlucky ones. However, everything in life is a risk, so pick the doctor out of the ones you've seen that you really trust & ask him some hard questions before you decide. GOOD LUCK!! Elizabeth LASK 43 wrote: > I'd Like to Know how old you were when you had your surgery. I'm 43 yrs old > and the surgeon said I could wait a few yrs but not too long. My degree is 65 > to 70. I have the hump, rib rotation, uneven hips, pain ( muscle spasms after > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Robert Holloway Date: Tue, 12 May 1998 08:28:32 -0700 Subject: Evoke Potentials Monitoring Dear hmc: Evoke Potential Monitoring is a non-invasive procedure using small electrodes pasted to the skin to make sure that nerve impulses from the feet to the brain do not change during the surgery. If there is a change in the nerve responses the doctor knows that the work he has just completed on the patient may have affected that part of the spinal nerves. With EPM information, the doctor can repair that problem at that moment because, and as I understand it, the longer that damaged area of the spine is left unrepaired, the greater the danger of paralysis. It was explained to me that a highly trained technician operates this equipment with a doctor nearby to help out in case of trouble. This information helped to convince us to have our daughter's surgery where we did. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Linda Eriksson" Date: Tue, 12 May 1998 04:00:28 PDT Subject: hi everybody! hello! my name is Linda Eriksson, and I am 15 years old, I live in Sweden. Before I hade 48 degrees, but now after the scoliosis operation I had I have about 3 degrees. I would like to talk/write with other people who have scoliosis, and maybe have had an scoliosis operation as well, this is not a need. Anyway, I am waiting for an answer.... //Linda :-) ______________________________________________________ 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: Lilbit0603 Date: Tue, 12 May 1998 01:12:35 EDT Subject: Re:Spoke to Crystal Dr. today........ Linda And everybody: I called Crystals surgeon today about the pain in her Back and the feeling of the lump at the top of the fusion... He told me That the stabbing pain she is getting between her shoulders now is Normal...And to Ice it and do some stretching as for the lump he said he really doubts that it is her rod or hooks or anything like that... ( she feel down on her butt a week or so ago outside playing kick ball) Scared the crap out of me Needless to say..But he said to still keep the appointment for June 19th He didn't feel she should come in right away... Kinnda Bothered me that he didn't feel it necessary to see her right away...but relived also... Thank You for all your help...Thoughts and suggestions,,, She is going on 4 months post op and is very hard to keep a kid down when they feel nothing is wrong...UUUGGHHH! Kids... Thanx. Linda M ______ 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 Date: Tue, 12 May 1998 09:34:33 EDT Subject: Re: I have a different question...Re: Scoliosis & Car Types Hi, All, << You have to be careful because many of the sport utility vans are now designed with a sports car seating position (i.e. although the vehicle is high off the ground, you actually sit low to the ground with your legs extended outward). >> Now I'm really confused. If the seating position described above is bad for scoliosis patients, how/why is riding a recumbant bike, where the positioin is about the same, often recommended by doctors and physical therapists? 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: Eckman Barbara Date: Tue, 12 May 1998 09:42:37 -0400 Subject: last-minute surgery tips? Hi, My 13 year old son Alex is having anterior surgery, fusion from T9-L2, on Tuesday May 19. It was originally scheduled for June 30 but was moved up due to scheduling (not medical) issues. He has given 2 units of blood via autologous donation, though the surgeon says he rarely uses any for the anterior surgeries. Alex's pre-admission visit is scheduled for Friday, May 15. Does anyone have any last-minute tips? He'll hopefully get a good idea of what the surgery and hospital stay will be like during his pre-admission visit. There is a bed for a parent in each room. We also have reserved a room at the hotel across the street from the hospital for his entire stay, for the other parent or in case he doesn't want us in his room. We don't live too far away from the hospital (15 miles?) but I can't imagine being even that far away from him under the circumstances. Alex is handling things well but definitely is nervous and worried about the surgery and the aftermath. Thanks for all the support you've given us since January when we first found out that Alex needed surgery. With your help, I think I've been able to fight my way through from depression to optimism, which enables me to be of much more use to Alex. 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: "carol lytle" Date: Tue, 12 May 1998 08:29:19 PDT Subject: Incision question Jenni asked me a question regarding her future scar from surgery. When we were visiting one of our doctors patients, her mom was telling us the details how things were and she mentioned "When they were closing her up the Dr. came out to tell us all about the surgery and how things went". Jenni and I both caught that and wondered why the surgeon wouldn't close the incision. Jenni asked me to call the Dr. and ask him, which I did but he is out of town until Wednesday so he will respond by Thursday his nurse said. Jenni wondered if he isn't the one who does this, who does, and if anyone ever has a plastic surgeon come in to do it to reduce the cosmetic look of the scar. Has anyone ever done that? We are ER watchers :) and Jenni doesn't want some "intern" doing it. I don't blame her! We have 24 days left and I feel we are in the eye of the storm. Things are calm all around us and everything seems so normal right now. We are done with school in one more week so life is pretty busy. I think that might be the key actually, going to keep her reeeallll busy for the next few weeks. Carol ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.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: Jessie Deyoe Date: Tue, 12 May 1998 08:52:36 -0700 (MST) Subject: Re: Cars I drive a '97 Chrysler LHS, leather seats, both front seats electric and completely adjustable. It also has a lumbar adjustment. I love it. I can move the seat to any position that's comfortable on that particular day. You know how that is. What's good one day may not be the next! Good luck finding a car that suits you. My secretary says she will rent a car for a week before she buys it. Sounds like a good idea to me. Jessie ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: jdonathan@smtplink.ag-inc.com Date: Tue, 12 May 98 11:40:13 -0500 Subject: Re:last-minute surgery tips? Hi there! The very very best of luck to your son and to you too! (and to your husband!) I can think of a few things that I felt were really great when I had just undergone surgery and maybe they would apply here... #1, my boyfriend was there when I first woke up, and he looked really happy, told me I had done really well, and kissed my forehead. Now, he told me later that he was actually completely scared, I looked really awful and he couldn't see my eyes because they were all black from the operation, and that he didn't hear me ask him to kiss me, he just did... But him acting that way to me made me feel very safe. So I guess my tip is, try your hardest to act like everything's great and give him a kiss when he wakes up, and tell him he did great. I'm sure it'll be true! And even if there are complications, believe it'll be true in the end. <:) I believe that feeling safe kept me safe, you know? #2, my mom would, out of nervousness, shake my hand around when she was holding it instead of just quietly holding it. I really didn't like that much. ;-) So, while I really loved having my hand held, I liked to have it held still... #3, sometimes I was so passive that I would forget to use my morphine... my boyfriend could tell that the pain was getting worse "by my eyes getting shallow and looking scared." Then he would say "button" and I would push it. #4, I think the best thing is just don't show him that you're scared post-op, and be up for helping him walk, and get into his brace, and eat, and all that stuff. You'll do great. And I'm sure that's a given, seeing as how you're his mom. ;-) #5, my appetite was really trashed from all the drugs and stuff, so when I got home I found it very hard to eat... I guess I'd suggest making a list of "comfort foods" you know he likes, and also fattening foods and yummy liquids (combine the two into a shake?), as I at least found I lost a lot of weight and a lot of WATER. I was pretty dehydrated when I got out, despite being on IV the whole stay. And this was bad because when I threw up the pain meds (only once, after a premature steak dinner), I got dehydrated although a normal person wouldn't. So be prepared to fatten him back up and get liquids into him. ;-) Best of luck! It sounds like you guys are doing great so far, and I'm glad you have the hotel room for the week. Keep us posted!! Jenn (fused T2-L1 Jan 22, 1998) ______ 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: DLCBH Date: Tue, 12 May 1998 11:33:48 EDT Subject: please resend Whoever sent the email "what I have learned" could you please resend it. I would really like a copy and I deleted by mistake. Thank you so much in advance. Or anyone eles that saved it please resend it. You can send it to me directly. Thank you again. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: jdonathan@smtplink.ag-inc.com Date: Tue, 12 May 98 12:01:50 -0500 Subject: To Wendy Hi Wendy! I was really sorry to hear about your experiences... do you think we could email privately? I am a 23 year old who just had the surgery, maybe we could talk a bit. Well, if that sounds okay to you, my address is jdonathan@ag-inc.com. Hope to hear from you! Jenn ______ 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: "Gail Walsh" Date: Tue, 12 May 1998 13:18:38 -0500 Subject: Re: Re:last-minute surgery tips? Hi, >From my recent surgery, I know what worked well for me during and after the surgery. I had a close friend there just before the surgery. She was there when I woke up and it was so comforting to have someone there to speak up for me. I was in intensive care for a week and I also forgot the use the morphine pump so my friend would do that for me. I had a difficult time eating and for a long time, could only eat ice chips. The ice chip diet, I called it. Alex will likely have a better appetite but there are some things you can do to make sure. In my case, I was craving popsicles, something I had not eaten in a few years. Banana popsicles were like heaven. Find out his fav comfort food and bring it to him. My friends kept me supplied with fruit punch and banana popsicles. When I had major scoliosis surgery in Boston, I became "addicted" to Hawaiian Punch. Regrettably, it is not marketed in Canada. Avail yourself of all the resources the hospital has. When I had surgery in Boston, I was alone for the larger part of it and as a 17 year old, was not really into some of the play programs a Childrens' hospital had to offer. However, there were wonderful people and services there. A social worker bought me a recorder when I could no longer play the guitar, brought in by one of the nurses. I also painted and wrote (while on a stryker frame, a sometimes amusing endeavor!). So, at least while Alex will have less hospital time than I had, give him lots of activities when he is feeling up to it. Music is also good. It takes your mind off the pain. I hope this is helpful. Good luck to Alex and to you!! Gail ______ 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: Lilbit0603 Date: Tue, 12 May 1998 12:23:20 EDT Subject: Re: last-minute surgery tips? Hi Barbara, My daughter also 13 had surgery in January. Make sure you have lots of pillows handy when ya come home...And take some to the hospital The more the better... And Tell your son to keep his chin up.... And not to Sit and be in pain for fear of getting a shot or having them mess with him when he is hurting....Kids aren't very truthful about pain when the fear the may have to get a shot or fear the nurse or Dr.'s will come in and start messing with them. I know it was very great to be very Informed and know as much as we could going into this..But nothing prepares a Mom for what you see when you walk into the recovery room... Be strong... And know everyday it DOES get better and better and you will just be totally amazed at how quickly the kids bounce back.... Crystal was back to school part time only 3 weeks after her surgery. On or About the 3rd day expect a very rough and difficult 24 hrs. All the hormones and Everything will be getting back to Normal after being under heavy anesthetic and pain meds... The nurse In charge of our Daughter told us to expect something Like 2 weeks worth of bad pms all raped up into a 24 hr period.... And it was very rough...Crystal cried the whole time...Couldn't get comfy... Not so much in pain but very unhappy...kept begging me to take her home..... Tell your son he is in our thoughts and prayers as well as you and dad!!! Please keep in touch when ever possible to let us know how you all are doing. And if your son would like to e-mail my daughter with any questions or to just chat with someone who has been there please feel free..... My daughters screen name is Duckymone@aol.com Her name is Crystal. Best wishes...and speedy recovery! Linda M ______ 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: "Ruth Andrick" Date: Tue, 12 May 1998 14:22:32 -0400 Subject: Re: WHAT I HAVE LEARNED... DLCBH I loved it so much I saved it and printed it out to show others so here it is again. Ruth - ---------- > From: Rufus Brown > To: scoliosis@ai.mit.edu > Subject: WHAT I HAVE LEARNED... > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: DLCBH Date: Tue, 12 May 1998 15:01:33 EDT Subject: Re: WHAT I HAVE LEARNED... Thank you so much to everyone that responded. I really appreciate it and it was so kind of all of you. Have a great day. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Rugrat Date: Tue, 12 May 1998 14:50:55 -0500 (CDT) Subject: Re:Spoke to Crystal Dr. today........ > Linda And everybody: > I called Crystals surgeon today about the pain in her Back and the feeling of > the lump at the top of the fusion... > ... I am scheduled to see my orthopaedic surgeon tomorrow; I haven't seen him in three years. One thing I discovered recently is that this biting shoulder pain is much more common than once thought. I used to get that same pain Crystal is describing. It feels exactly like a stabbing. I never was taken seriously, as far as pain meds went. Basically, I rode it out until it subsided. Something about it bothers me; maybe the fact that doctors don't consider it a side effect; more like a minor twitch. Stretching is a good thing, though, your doctor is right. Initially, it caused me more pain, but a few months later the pain stopped. Sounds like you have a good doctor; however if you feel different, always get a second opinion. Andrea ______ 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: "Dean A. Hoppenrath, DC" Date: Tue, 12 May 1998 15:25:28 -0500 Subject: [none] List, Here is an interesting study in the April 1, 1998 issue of SPINE Journal about the use of NSAID's After spinal fusion... Dr.Dean Spine 1998 Apr 1;23(7):834-838 The effect of postoperative nonsteroidal anti-inflammatory drug administration on spinal fusion. Glassman SD, Rose SM, Dimar JR, Puno RM, Campbell MJ, Johnson JR Department of Orthopaedic Surgery, University of Louisville School of Medicine, Kentucky, USA. [Medline record in process] STUDY DESIGN: The influence of ketorolac on spinal fusion was studied in a retrospective review of 288 patients who underwent an instrumented spinal fusion. OBJECTIVE: To assess the effect of postoperative ketorolac administration on subsequent fusion rates. SUMMARY OF BACKGROUND DATA: Nonsteroidal anti-inflammatory drugs are widely used compounds, which are known to inhibit osteogenic activity and have been shown to decrease spinal fusion in an animal model. No previous studies have examined the influence of nonsteroidal anti-inflammatory drugs on spinal fusion in clinical practice. METHODS: The medical records of 288 patients who underwent instrumented spinal fusion from L4 to the sacrum between 1991 and 1993 were reviewed retrospectively. The 121 patients who received no nonsteroidal anti-inflammatory drugs were compared with the 167 patients who received ketorolac after surgery. The groups were demographically equivalent. RESULTS: Ketorolac had a significant adverse effect on fusion, with five nonunions in the nondrug group and 29 nonunions in the ketorolac group (P > 0.001). Ketorolac administration also significantly decreased the fusion rate for subgroups including men, women, smokers, and nonsmokers. The odds ratio demonstrated that nonunion was approximately five times more likely after ketorolac administration. Cigarette smoking also decreased the fusion rate (P > 0.01); smokers were 2.8 times more likely to develop nonunion. CONCLUSION: These data suggest that nonsteroidal anti-inflammatory drugs significantly inhibit spinal fusion at doses typically used for postoperative pain control. The authors recommend that these drugs be avoided in the early postoperative period. PMID: 9563116, UI: 98224217 "Study and, in general the pursuit of truth and beauty is a sphere of activity in which we are permitted to remain children all of our lives." "There comes a time when the mind takes a higher plane of knowledge but can never prove how it got there. All great discoveries have involved such a leap. The important thing is not to stop questioning." Albert Einstein "Never hire a ferret to do a weasel's job" - Louie the Lizard (1997- ) Budweiser Spokeslizard ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Katherine Parrish" Date: Tue, 12 May 1998 20:20:54 GMT Subject: Re: Hi Everyone! Sharece, I'm Katherine and I also have scoliosis. I have had 2 major sugerys and I'm only 15! It really sucks. But oh well. The 1st surgery was abot 3 or 4 yrs. ago and the recent one was last year in June. This time I had 2 steel rods in my back. The 1st one they put just 1. Well I have to go now. Buh bye! Kat :p ______________________________________________________ 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: Pegleg6305 Date: Tue, 12 May 1998 17:19:27 EDT Subject: Re: hi everybody! welcome to the list Linda.... This is a great thing to use if u have questions, or just enjoy hearing and comparing similar stories! You already have a bunch of pen pals....this list...... 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: Pricego Date: Tue, 12 May 1998 19:17:56 EDT Subject: Re: Studies on Genetics or other Causes for Scoliosis Scoliosis seems to run in our family, too. One sister and I have it and have both had scoliosis surgery, albeit 13 + years apart. But the middle sister doesn't. I have been told about some studies, but I don't have the information at hand. I'll send the contact person's name if I find it. EPrice in Dallas ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Leah640 Date: Tue, 12 May 1998 19:19:31 EDT Subject: Re: Dr. Dean, Tanks for that inffo, I found it very interesting. It is a very good thing to know, since these meds are over the counter now. If my kids ever need fusion, (God forbid) or if I do end up having more fusion I would want to know that. Keep the ones coming 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: "Rachel Freedenberg" Date: Tue, 12 May 1998 15:15:30 PDT Subject: Thanks everyone! Hi, thanks to everyone who's been writing to me about surgery! If you asked me to write back and I haven't yet, don't worry, I will! Soon! I'm going to go back to my orthopedist late August, early September. Then we will set a time for surgery and stuff like that. This spring and summer I'm going to go to some other doctors for second opinions. One is the chief of pediatric orthopedics, Paul Sponseller (sp?), at Johns Hopkins. The other is Dr. Emans at Children's Hospital in Boston (I live in Maryland, but we're going to Massachusetts for vacation). Has anyone had an experience with these 2 doctors? I've been reading some things about surgery. The most worrisome thing for me is my schoolwork! I'm scared that I won't be able to make it up and I'll be far behind and my teachers won't accept late work. But oh, well, I suppose I'll cross that bridge when I come to it! I am SO thrilled that the list is up and running again! - -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: scomilbrce@juno.com (Jean A Stef) Date: Tue, 12 May 1998 17:17:09 -0500 Subject: hello I'm going to start wearing the milwaukee brace and I was wondering if anyone on here wore or is wearing it. If so please e-mail me. If you could I would also appreciate a description of your brace and any advice you can ive me for wearing it. Thanks. J. A. _____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] 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: scomilbrce@juno.com (Jean A Stef) Date: Tue, 12 May 1998 17:13:27 -0500 Subject: HI Sharece, Hi I would love to be your pen pal. I don't have my brace yet but I got fitted for it yesterday. I'm going to wear the milwaukee brace. Could you describe your brace to me? I haven't seen pictures of any braces so I was wondering if you would so that I would have some idea of what to expect when I get my brace. I just found out last week that I even have scoliosis and the doctor said that we couldn't put off getting a brace so I've already been fit. He thinks I need it as soon as possible so he is making the brace makers work extra fast on mine so I can start wearing it as soon as possible. How long did it take for you to get yours? He said it usually takes about 2 weeks but he is making them be done by maybe tomorrow or friday. Which means I will have my brace soon which really worries me. I don't think I have anymore questions for you but if you could give me any advice you know about wearing a brace I would greatly be interested. Thanks. J. A. _____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] 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: "Cyndi King" Date: Tue, 12 May 1998 19:00:03 -0400 Subject: Sitting in cars, planes, trains Last month returning from LA I sat next to the actress, Lee Grant. She shared with me a secret for getting lumbar support in those crazy kind of seats. She asked the flight attendant for a serving tray - the kind on which you get your meal! She put it behind her back with one of those small airline pillows and she was set for the flight to JFK! I used 2 pillows, but I loved her idea!! Wanted to share with you. She has back trouble, who doesn't(?), but not scoliosis. Regards, CBK ______ 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: Tue, 12 May 1998 17:23:04 -0700 Subject: Re: HI J.A... For pictures of the two most common types of scoliosis braces go to the following www locations: http://home.earthlink.net/~lindaracine/boston.jpg http://home.earthlink.net/~lindaracine/milwaukee.jpg If your email program supports html, the links above will be underlined. If that's the case, you can simply click on the link to see the pic. Regards, Linda 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: Lee Latour Date: Tue, 12 May 1998 17:36:33 -0700 (PDT) Subject: Re: Incision question When my daughter had her surgery in February, she had two surgeons. A periatric surgeon, whose job was to open her up and get her body ready for the orthopedic surgeon. After the ortho pedic surgeon was finished, the pediatric surgeon did the closing. We met with the pediatric surgeon prior to surgery and he explained everything he would be doing. Perhaps Jenni's ortho has an assisting surgeon also. Might want to ask. - -Lee ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Glenn S. Burke" Date: Tue, 12 May 1998 21:02:51 -0400 Subject: Re: Daughter's complication w/ surgery Lynne, It sounds like your neurologist has this well in hand now, and Cara is doing much better. A friend of mine had a pituitary tumor removed last summer, and indirectly from the protracted surgery, had some moderate compressed nerve damage. The result sounds similar to Cara's, but restricted to his left arm; he has only limited sense of touch, and almost no sense of where it is. The motor control was not affected at all though, because as you say the systems are separate. In his case, most of the sense is still missing after nearly 10 months, so he's getting used to compensating. He's also been reading a book about someone who lost all sense of touch/position (proprioception), but not muscle use, due to some kind of infection; so has become practically an expert on this sort of thing. It sounds like Cara is largely recovered, but if you think you'd like to talk to someone about having this kind of nerve damage, I can put you in touch. Best of luck to both of you, - --------------------------------------------------------------------------- Glenn S. Burke | gsb@pobox.com Phone: 617/492-7274 | Alternate: gsb@mc.lcs.mit.edu Fax: 617/661-3494 | Backup: gsb@tiac.net Hunt: 500/346-7860 | ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Lee Latour Date: Tue, 12 May 1998 18:18:49 -0700 (PDT) Subject: Re: Thanks everyone! Rachel, My daughter had surgery in February, a week after the term started. When she found out her surgery date, she met with her counselor and teachers. I also talked with them. We arranged to have her teachers put her homework in a file in the office that either I or a friend of hers would pick up. Here are the problems we encountered: First, her counselor and her teachers really had no understanding of the magnitude of her surgery. They thought she was going in for "back problems." Consequently, they expected her to return to school and be fully participating in a week or two after her surgery. Second, many of the teachers did not put homework in the file for her. Here's how we resolved it all: Two weeks after Brie's surgery, I contacted her counselor to update him on her progress. At that time, he said he had no idea what her surgery entailed and neither did her teachers. The school's principal had informed them about scoliosis and that spinal fusion surgery was a lot different than having a back problem. Her school offers at home tutoring for students that are absent for medical reasons. At first, we did not take advantage of this free service. In hindsight, I wish we would have. When we did engage the tutor, she not only helped Brie with make-up work, but she also was an advocate for her with her teachers. Brie returned to school part-time about 4 weeks after surgery, starting out with one class. Every 1-2 weeks she added another class. She now takes 4 classes, is tutored in one and meets with her art teacher once a week for projects she is to do. I suggest that you do the following: Make sure your counselor and teachers are aware of what your surgery is all about. Talk with the school nurse too. He/she has a better understanding than anyone. If your teachers are to send homework home for you, have someone make sure they do. If your highschool offers an at home tutoring service, take advantage of it. Brie is an A student and is doing well at her studies. After her teachers realized what exactly was happening to her, they were very cooperative and reassuring. SHe has had no problems with them regarding make-up work or turning in assignments late. For Brie, the most difficult part of returning to school was that she tired easily. She had no pain, but she did not have much stamina. We wish you well. Talk honestly with your teachers. I think you will find that they are more than willing to help you get through all of this. Good luck... - -Lee 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: Mercy106 Date: Tue, 12 May 1998 22:33:53 EDT Subject: Re: Hi Everyone! sure i would love to be your pen pal sounds liek fun! mercy106@aol.com auna 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: Mercy106 Date: Tue, 12 May 1998 22:36:01 EDT Subject: Re: Thanks everyone! Rachel, I think your teachers will understand if you are haviang surgery 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: richa@softcom.net Date: Tue, 12 May 1998 19:35:58 -0700 Subject: Re: Thanks everyone! Hi Rachel! Don't worry about your schoolwork. My teachers said that I didn't have to do any of my hoemwork when I had surgery, but it was a differnet kind of surgery. All I had to do is read through the lessons that they were doing. And for PE I had to make it up though. Hope you do Ok with the surgery! And don't worry about your schoolwork! But your teachers might not be as kind as mine. I go to a private school. Well, have to go! bye! Sharece Atkins 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: "Arinya N. Janes" Date: Tue, 12 May 1998 21:41:51 -0500 (CDT) Subject: Long time no see Peggy, It's nice to see you in my mailbox again. So, how's it going? My operation is on 13 July. 62 days away. Nikki 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: Michelle Ewing Date: Tue, 12 May 1998 23:08:37 -0400 Subject: Re: last-minute surgery tips? Barbara, As the mother of a 14 year old son who may face surgery I wish you well and you and your son have my prayers. I've been so busy I haven't read all the posts, so if I'm repeating I apologize, But where are you from? What hospital is the surgery being done in? Who is your surgeon? We're from NJ, our ortho is Mark Rieger. Best wishes, Michelle ______ 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: hmc Date: Tue, 12 May 1998 22:47:53 +0000 Subject: hmc's 2nd (etc.) opinions Okay. I have finally completed my opinion-seeking surgeon visits and this is what I've found: *(background info: I am 22 and have had scoliosis since age 5, noticed on a pneumonia X-ray; unsuccessfully *braced at 13; told surgery was my only option at age 15, when I opted out of the traditional med. community; at *20 I began aching more and noticing other unbalanced changes in my body, and so have been researching spinal *fusion surgery; Lumbar curve approx.67 deg.; compensatory thoracolumbar curve approx. 45 deg.) Opinion 1: AP surgery, CD rods for both curves posteriorally T4-L4; Dwyer w/ cable fixation anteriorally T11-L3; curves measure 68 deg. and 49 deg. Opinion 2: Possibly just anterior fusion T12-L4; Possibly AP, about the same fusion limits, depending on bending X- rays; possible corpectomy; one of the newer, lighter-weight instrumentations; though I would probably have to have surgery in my lifetime, he advised putting it off as long as possible unless I can prove current progression; no X-rays taken to measure Opinion 3: Here's where the plot thickens. He suggests an anterior fusion, min. T12 - L3 (depending on bending films), probably using TSRH instrumentation and titanium cages; curves measure 63 deg. and 42 deg.; however, he said I had what appeared to be congenital scoliosis because of so much wedging at L3 -- more than would usually be expected for this kind of curve at my age; also, though my legs (heel to ball joint) are the same length, the right side of my pelvis is 0.5 cm higher - by X-ray and measuring tape; also, my pattern and time of progression doesn't fit the standard idiopathic patterns; of course, to tell for sure, he'd have to have my old X-rays, which I am looking for currently (or at least the typed reports of them); curves measure 63 and 42, also must realign C7 and S1 Opinion 4: AP surgery L4/5 to T10/11, though L5/S1 must be considered until a discogram proves otherwise; Moss-Miami instrumentation posteriorally, no instrumentation anteriorally; main concern to bring my C7 over S1, which are almost 2" off (to the L); possibly sacrifice sympathetic nerve anteriorally; pelvis not shown on X-ray, but possible congenital scoliosis disregarded; no leg measurement taken; curves measure 56 deg. and approx. 43 deg. Now I'll tell you who each of the opinions came from: 1 -- Dickson of Houston, TX; 2 -- Holt of Louisville, KY; 3 --Horton of Atlanta, GA; 4 - -- Kostuik of Baltimore, MD. So what do you think? Horton is who I'm most comfy with -- I had a better repoire (sp?) with his less pedantic, easy-going manner, and of course I like the idea of a more conservative fusion, for obvious reasons *and* to give revisionists something to work with should I have to have another surgery later in life. But if I'm putting myself at much risk to be fused incorrectly, I should keep looking. But I've been looking, reading, making visits, etc. for so long! -- You can see the kinds of arguments I'm having with myself... Any input would be apprecated! - --hmc. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: hmc Date: Tue, 12 May 1998 22:47:53 +0000 Subject: hmc's 2nd (etc.) opinions Okay. I have finally completed my opinion-seeking surgeon visits and this is what I've found: *(background info: I am 22 and have had scoliosis since age 5, noticed on a pneumonia X-ray; unsuccessfully *braced at 13; told surgery was my only option at age 15, when I opted out of the traditional med. community; at *20 I began aching more and noticing other unbalanced changes in my body, and so have been researching spinal *fusion surgery; Lumbar curve approx.67 deg.; compensatory thoracolumbar curve approx. 45 deg.) Opinion 1: AP surgery, CD rods for both curves posteriorally T4-L4; Dwyer w/ cable fixation anteriorally T11-L3; curves measure 68 deg. and 49 deg. Opinion 2: Possibly just anterior fusion T12-L4; Possibly AP, about the same fusion limits, depending on bending X- rays; possible corpectomy; one of the newer, lighter-weight instrumentations; though I would probably have to have surgery in my lifetime, he advised putting it off as long as possible unless I can prove current progression; no X-rays taken to measure Opinion 3: Here's where the plot thickens. He suggests an anterior fusion, min. T12 - L3 (depending on bending films), probably using TSRH instrumentation and titanium cages; curves measure 63 deg. and 42 deg.; however, he said I had what appeared to be congenital scoliosis because of so much wedging at L3 -- more than would usually be expected for this kind of curve at my age; also, though my legs (heel to ball joint) are the same length, the right side of my pelvis is 0.5 cm higher - by X-ray and measuring tape; also, my pattern and time of progression doesn't fit the standard idiopathic patterns; of course, to tell for sure, he'd have to have my old X-rays, which I am looking for currently (or at least the typed reports of them); curves measure 63 and 42, also must realign C7 and S1 Opinion 4: AP surgery L4/5 to T10/11, though L5/S1 must be considered until a discogram proves otherwise; Moss-Miami instrumentation posteriorally, no instrumentation anteriorally; main concern to bring my C7 over S1, which are almost 2" off (to the L); possibly sacrifice sympathetic nerve anteriorally; pelvis not shown on X-ray, but possible congenital scoliosis disregarded; no leg measurement taken; curves measure 56 deg. and approx. 43 deg. Now I'll tell you who each of the opinions came from: 1 -- Dickson of Houston, TX; 2 -- Holt of Louisville, KY; 3 --Horton of Atlanta, GA; 4 - -- Kostuik of Baltimore, MD. So what do you think? Horton is who I'm most comfy with -- I had a better repoire (sp?) with his less pedantic, easy-going manner, and of course I like the idea of a more conservative fusion, for obvious reasons *and* to give revisionists something to work with should I have to have another surgery later in life. But if I'm putting myself at much risk to be fused incorrectly, I should keep looking. But I've been looking, reading, making visits, etc. for so long! -- You can see the kinds of arguments I'm having with myself... Any input would be apprecated! - --hmc. ______ 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: Tue, 12 May 1998 22:49:49 -0700 Subject: Re: hmc's 2nd (etc.) opinions hmc.... There's no way for any of us to judge which procedure would be best in your case. I think you have to pick the doctor with whom you're the most confident and comfortable, and let that surgeon do what they think is best. If you haven't already, be sure to ask the surgeon how many scoliosis surgeries they do each year. Also, how many of them are on people in your age range. And ask him/her about their outcome numbers. Has s/he had any sigificantly bad outcomes? Be sure to talk to at least 3-4 of his/her patients, preferably in your age range. Good luck with your decision. 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". ------------------------------ End of scoliosis V1 #825 ************************ 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". For help on using the scoliosis-digest, (especially unsubscribing) send an electronic mail message to "scoliosis-digest-request@ai.mit.edu" with one line of text: "help". Spammers and promotional posts not allowed.