From: bounce-scoliosis To: scoliosis-digest@ai.mit.edu Subject: scoliosis V1 #840 Reply-To: Errors-To: bounce-scoliosis Precedence: bulk scoliosis Wednesday, 27 May 1998 Volume 01 : Number 840 Today's subjects for scoliosis, scoliosis-medical, scoliosis-child and scoliosis-teens: RE: Debra - the next child [Sharon Kay Miller ] Re: Pilates [Margaret Arth ] Re: falls [stephanie demblon ] Hypermobility [Margareta Norell ] RE: new to list ["Sell, Lois A." ] RE: Help - First Day with Boston Brace ["Sell, Lois A." ] June surgeries and bone maturation ["carol lytle" ] donating blood ["carol lytle" ] Re: Pilates ["Carla E. Barnett" ] Re: The Spine ["Carla E. Barnett" ] Re: corsets [Leah640 ] Re: donating blood [Leah640 ] Blood Donation [zeteo@sirius.com] Re: Marfan's orthopedic assessment [Quackkerz ] Re: Problem [Elizabeth Mina ] RE: consumer reporting [Marla Dowdeswell ] Re: A/P surgery ["Kathy Stott" ] Marfans and Scoliosis/Abnormal Aorta/Spondylolisthesis [Thomas & Kelley M] terminology [Marla Dowdeswell ] Marfans and Scoliosis/Abnormal Aorta/Spondylolisthesis [Thomas & Kelley M] Re: June surgeries and bone maturation ["Carla E. Barnett" ] Re: Celebrities with scoliosis ["Katherine Parrish" ] Hehehe ["Katherine Parrish" ] Re: Blood Donation [Linda Racine ] Re: Marfans and Scoliosis/Abnormal Aorta/Spondylolisthesis [stephanie dem] Re: Hypermobility [stephanie demblon ] Re: terminology [Linda Racine ] Re: Blood Donation [RSMVMD ] Re: Marfans and Scoliosis/Abnormal Aorta/Spondylolisthesis ["Gail Walsh" ] Re: corsets [RSMVMD ] Re: terminology [R.N.A.@att.net] Re: Roe's Remarks About Pain in the Morning [Halavah2@aol.com] Re: falls [Halavah2@aol.com] Re: new to list [Halavah2 ] Re: Marfans and Scoliosis/Abnormal Aorta/Spondylolisthesis [Halavah2 ] Re: Marfans and Scoliosis/Abnormal Aorta/Spondylolisthesis [Jewel2346 ] Re: The Spine [Silberkrmf ] Re: The Spine [Kathy Mayhall ] RE: Help - First Day with Boston Brace [Jennifer Parker ] Re: Blood Donation [SilverRD ] Re: Celebrities with scoliosis [Jewel2346 ] Re: Hehehe [Jewel2346 ] Re: Hehehe ["Carla E. Barnett" ] Surgery [R.N.A.@att.net] Re: Surgery [Linda Racine ] Re: new to list [Silberkrmf ] Re: Blood Donation [zeteo@sirius.com] ---------------------------------------------------------------------- From: Sharon Kay Miller Date: Tue, 26 May 1998 09:42:23 +0200 Subject: RE: Debra - the next child Debra, How nice to hear from you - and hear about some of the things you are doing to alleviate the pain. It is interesting to hear you also believe that the scoliosis worsened after your pregnancy. You are presumably younger than I am (I'm now 46), so I started relatively late after finding the right guy to finally have a family with! Little did I know that my back would give me so many problems. I also faced the dilemna you are now facing - of having another child. I really wanted one, but was frankly also very frightened of the pain and possible debilitation afterward, and wondered how I could handle another bundle of energy. I decided to leave it to fate, and I became pregnant - actually twice. I lost them both, the first one after I had the placenta test to determine the fetus was all right genetically. It was, and we knew the sex and everything, so it was hard to lose that little thing. I still think that my back was a likely cause (or factor in) of the miscarriage, since I have had nerve and circulation problems. I figured someone was trying to tell me something, so I just didn't force the issue anymore. I feel very lucky to have a happy, healthy daughter of 7 (yes, she is almost using the blow dryer herself). One of the reasons she had collic, too, was that she was born with a hip 'click' - something that is apparently fairly frequent here in Scandinavia - and that is often thought to be related to a hormone problem. The click means that the hip joints aren't completely formed, and they have to be in a leg brace for 3 months. Perhaps I'm drawing too many conclusions, but I can't help but think that this may also have something to do with the connective tissue with joints - like scoliosis. I have also read that if a child is born with a hip 'click' that there is a 40% chance that the next sibling will have it as well. I have been told that I am hypermobile, and that this charactistic is also found in many scoliosis patients - and that if one is hypermobile, the joints don't fare well in pregnancy. In one article, I have read that the joints will likely cause problems in the 1st pregnancy, even more in the second, but after that - it shouldn't get any worse!!!! If this applies to you - there is the good news!?! Thanks for sharing your experiences. Sharon > ---------- > From: Debgwest[SMTP:Debgwest@aol.com] > Sent: Monday, May 25, 1998 7:14 PM > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Sharon Kay Miller Date: Tue, 26 May 1998 09:52:24 +0200 Subject: RE: falls Debra, I have also wondered about this - and have asked my doctors about it - they all have denied that a fall such as the one I had would have an impact on scoliosis. At the age of 12, I fell (more like flew) off a skateboard and dislocated my hip. After not being able to move the leg and searing pain, I was transported to the doctor's office, where the hip 'snapped' back into the joint. Nothing ever happend since - and I first began to have problems in my 30s - which was when I was eventually diagnosed by a chiropractor as having a 'slight' scoliosis. Sharon > ---------- > From: Debgwest[SMTP:Debgwest@aol.com] > Sent: Monday, May 25, 1998 9:48 PM > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Margaret Arth Date: Tue, 26 May 1998 04:01:18 -0400 (EDT) Subject: Re: Pilates Hi hmc, I'm sorry I'm responding to this pretty late, I've been kind of weird about my email postings b/c of the pain I'm in. Well, as far as the pilates...I have my own home system. I actually got it off an infommercial (and I really despise those!;). About 8 yrs ago I read in Shape magazine that professional dancers were using this method. So I splurged for it over a year ago. Because of this home system, I'm not going to a studio for instruction. I really fell in love with it while using it preop b/c of how I felt afterwards, and it was never stressful on my back (a real plus!). I recently brought it to the attention of my physical therapist, to see if I could start back up. He feels that it is still too early, but maybe in a few weeks. He thinks that there are many exercises that I won't be able to do for quite a while, but those that I can will be very beneficial--especially those abdominal and back muscles. He'll be creating a program that will focus on my needs and limitations. So I can't wait! I've noticed that a lot of the pilates exercises are very similar to what I would do in yoga or pt. Hmmm...think they're on to something??;) I've noticed this pilates craze too, especially here in NY. There are many studios here and it seems to be getting a lot of media attention. Oh, btw, Cyndi...I did see the previews for the show, but unfortunately didn't get to watch it. And hmc, you are right...it has been around since the 40s or 50s. Well, after I get back into it, I will definitely let you know how it goes. And I hope you've been able to see that instructor...good luck! Take care. - --Megan On Thu, 7 May 1998, hmc wrote: > > Megan -- > I came across an old post of yours about Pilates and couldn't remember > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: stephanie demblon Date: Tue, 26 May 1998 11:16:24 +0100 Subject: Re: falls > It is interesting that there are some dancers on the list. I was very active > as a child. Once I even fell off a very tall ladder on my rear. My mother > always wondered if the jar might have caused my scoliosis. I was > ... Hi Debra, I was a gymnast for many years and had fallen (like all kids) so many times...I stopped gymnastics at 14 and at 16 I had a accident.I will make a very short story but I was playing volley-ball and I didn't see the net...I felt down on my head ... Result : fracture skull,fracture of C4 and C7 moved slightly...and it's was the begining of all my problems...3 months after the accident, I experienced my first back's problems,and quickly after,my first x-rays... Some doctors that I have seen agreed in the fact that my scoliosis could came from the accident (or at least causes the pain) but no one said that they will give me a writing report.I'm still never had any report about the accident.The doctors hate to take their responsabilities about an accident, they don't like the insurance problems and the medical expert valuations... One of my ortho. decide to avoid surgery because of this problem (I promise you,it's true) It's so easy for them...nobody know what causes scoliosis... Take care of you... stephanie ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Margareta Norell Date: Tue, 26 May 1998 05:21:44 -0400 Subject: Hypermobility Message text written by INTERNET:scoliosis@ai.mit.edu > I have been told that I am hypermobile, and that this charactistic is also found in many scoliosis patients -< I am very interested in to know if a hypermobile persons have more difficult after a surgery. A doctor did not want to operate due to this fact. Margareta ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Sell, Lois A." Date: Tue, 26 May 1998 07:51:37 -0400 Subject: RE: new to list Sima The brace definitely appears to be the way to go at this point. Regarding bone age - however - you may want to wait for such an x-ray - -here's my reasoning. She's already had the x-rays to determine the curvature and you know you need the brace. She'll need followup xrays once she's in the brace. She's most likely not reached maturity if she's 12. So why add more x-rays? (I just get scared of having these youngsters have so many x-rays, and if any can be safely avoided, it seems better). She'll need that bone age xray eventually anyway, but it doesn't seem like it will tell you much right now. The two years after menstruation can be misleading. My daughter was diagnosed late - at age 14 and a half. But because she had been menstruating for about 1.5 years, and because she was already 14.5 and the curve was only 21 thoracic and 11 lumbar, they felt she would not progress and we should just come back in 6-9 months. Well my daughter started having back pain this past winter, and in the spring we went back at the 9 month mark. The scoliosis had progressed a degree a month!!!! (I hadn't even realized this would or could happen. The doctors had really minimized it - I think mostly because it was almost 2 years after the onset of menstruation. Now she's in the brace. She'll be 16 in a couple of weeks - and we're still hopeful that the scoliosis will stabilize now - at the 29-30 degree point - and we won't have to face the issues many of you on this list face. In any event, this time they did the bone age xrays and it shows she still has another 2 inches of growth! We're talking 3 years after menstruation. I still don't think the bone age xray is worth it for your daughter - since the reason for doing this xray is to determine if bracing is recommended - you already know it is. But you will need the xray to help determine when to stop bracing. (They say that bracing doesn't work after you've stopped growing). Good luck! Lois > -----Original Message----- > From: Sima Goldfarb-Rivlin [SMTP:rivlin@canaan.co.il] > Sent: Sunday, May 24, 1998 4:07 AM > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Sell, Lois A." Date: Tue, 26 May 1998 07:54:09 -0400 Subject: RE: Help - First Day with Boston Brace Eva One thing our orthotist 'forgot' to mention was that you don't tighten the brace to the maximum point right away. We did the same thing, we were pulling it tight to the 1 inch mark, and after a couple of days my daughter was in tears and said she couldn't do it anymore. Loosen it up a bit so she can sleep, and as she gets more comfortable, tighten it a hair more, gradually! Lois > -----Original Message----- > From: Chryssanthakopoulos, E [SMTP:elines@lucent.com] > Sent: Monday, May 25, 1998 10:09 AM > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Sharon Kay Miller Date: Tue, 26 May 1998 15:10:37 +0200 Subject: RE: Hypermobility This is very interesting - I have not heard that doctors may be reluctant to operate due to this condition. Sharon > ---------- > From: Margareta Norell[SMTP:MHNorell@compuserve.com] > Sent: Tuesday, May 26, 1998 11:21 AM > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Maggie Pajerowski Date: Tue, 26 May 1998 09:27:21 -0400 Subject: RE: heating pad I bought a similar thing at a craft show awhile back. It is called a Cherry Pit Pack (it is filled with cherry pits). You heat it for 2 minutes in the microwave and can even wet it if you need moist heat. It does smell strange though, so I think I would prefer the popcorn smell. Maggie > -----Original Message----- > From: Sharon Kay Miller > Sent: Tuesday, May 26, 1998 3:26 AM > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "carol lytle" Date: Tue, 26 May 1998 08:43:23 PDT Subject: June surgeries and bone maturation Hi everyone, 13 days until Jennifer's surgery. I can't believe it is almost here. All this waiting will come to an end. She seems to be having so many backaches lately, probably caused by alot of stress. I found her on the couch last night because her bed was hurting her back. Of course my scoliosis pain has been raging out of control - totally stress related so we all play musical beds every night. She will give her second unit of blood today - this will be her last. He only wanted two. Henry, I am so very surprised at your doctors suggestion that you not donate your own blood - if you get it done many weeks before surgery you will replenish on your own. You can donate up to 42 days before, but I'm sure you already know that. I am glad you are finally at this stage and I certainly hope this surgery will give you much needed pain relief. As far as girls becoming bone mature 2 years post mensus (sp?) that was pretty true to us although we were told initially it was 1 year. Well, after one year we were hoping we were in the clear, only to find out she was just beginning to get the "shadow" on the xray showing bone maturation. At 14 years and 3 months (2 years post mensus) her back went out of control and she was at a risser 5. Even at 14 years and 6 months she still had a small amount of growth left. Make sure you don't get false hope - we had that and the fall was tremendous. By the way they can find out how much growth is remaining by the pelvic area, they don't need the hand xray. Bracing - we did that for 5 years and good luck to all of you that are just beginning that process. Yes we were one of the unlucky ones that it didn't work for but I still believe it is something that must be tried - there is absolutely no comparison with the problems of the brace and what we are going through right now. If you were to ask my daughter, she would have a different view - she thinks she did all the brace wearing for absolutely no reason. You just never know but anything is worth a try. Carol This Friday Jenni goes to her pediatrician and gets her blood work testing (CBC, CHEM7, urinalysis). Does that sound like everything that is needed? She goes next week on Tuesday for her spinal monitoring (base line evoke potential - learned that one last week!) and tour. Then next Thursday for the final ortho meeting. My mom comes in on the 6th and will stay until the 22nd to help. I am very grateful to her for that. I still haven't made my final decision about the private nurse for the first few nights - doc said that is not an issue usually, but I am still waiting to hear from a nurse friend. ______________________________________________________ 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: "carol lytle" Date: Tue, 26 May 1998 08:52:30 PDT Subject: donating blood Anyone know this one? The technician that was with Jenni on her first unit of blood donation looked at her info and said that the doctor only wanted to save red blood cells. Why? 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: "Carla E. Barnett" Date: Tue, 26 May 1998 10:50:27 -0500 Subject: Re: Pilates Dancers, Tell me what Pilates are. Never heard of it. Carla - ---------- > From: Margaret Arth > To: scoliosis@ai.mit.edu > Subject: Re: Pilates > ... scoliosis > > patients, because it focuses on lengthening the muscles as it > > strenghtens them, instead of "bulking up". I've read, though I can't > > remember where, that lots of lactic acid can slow the muscular healing > ... relate, > > I would love to hear! > > --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: "Carla E. Barnett" Date: Tue, 26 May 1998 10:59:33 -0500 Subject: Re: The Spine Sharon, I have one of those micro heat pads. Cathy recommended a moist heat pad too. I plan to get one soon. The micro are good because it is versatile. I have taken mine to work and used it while I sat at the computer on bad days. The only thing is they do cool off after about 30 minutes. Mine also smells uuky. Maybe I have another kind. Mine has a little cover, which I neglected to remove before putting in the micro and it burned a hole in it. Now little white things go everywhere. Guess I could sew it up! Anyway, read your instructions guys! Carla - ---------- > From: Sharon Kay Miller > To: scoliosis@ai.mit.edu > Subject: RE: The Spine > ... ______ 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, 26 May 1998 12:15:48 EDT Subject: Re: corsets Margret and Kathy, I found that the girdle that I was recomended to wear for my hip and lower spine made the aria right above it hurt a lot more, dull ache to start then full blast musle spasms. Glad it works for some, but try it at home first, where you can take it off if it hurts. Good luck, 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: Leah640 Date: Tue, 26 May 1998 12:38:03 EDT Subject: Re: donating blood Carol, That is common, it is what is usualy transfused during surgery. Most ofthe time whole blood is not used as between that aand the ivs it would produce to much liquid volume. When I worked in the donor room we almost always sepperated the blood to packed red cells and plasma, which was frozen. The plasma is generaly held for the patient as well as the packed cells. Don't worry, that sounds like they know what they are doing. You can also ask them if they are using a cell saver, which keeps blood loss down to a minamum. Sorry my spelling is so bad but thats me. The pain meds only make it worse, oh well. Hope this helps, and good luck to Jenni. 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: zeteo@sirius.com Date: Mon, 25 May 1998 22:39:22 -0700 Subject: Blood Donation I go in tomorrow for my first blood donation. I am supposed to give 6 units. My first surgery is June 30, but my Dr. doesn't think I will need blood since it is only a rod removal surgery. I will be on I.V. antibiotics for 6 weeks after my June surgery because I have a localized infection around the rod. She wants it clean before she puts in new hardware. At first, I was told because I will be on antibiotics, I can't donate. But the blood bank told me I could donate after being on them for 10 days. Confusing. Anyway, I am going to try to get 4 units done before June 30, and then the last two afterwards. The first 4 units will have to be frozen. I just hope they somehow don't get lost or tossed out accidentally. I guess I will just have to keep reminding them to keep it until August. Also, I was wondering if anyone else has to call the hospital blood bank the day before surgery to make sure they have your blood? I have been told it is my responsibility to make sure the blood is there for me! Like I really need something else to worry about! Susan ______ 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: Quackkerz Date: Tue, 26 May 1998 09:25:33 EDT Subject: Re: Marfan's orthopedic assessment Dear Elizabeth, Your question about having scoliosis drs. check for Marfan's is basically this: Scoliosis is easier to detect than Marfan's. Marfan's is a connective tissue disorder and scoliosis is a result not a cause of it. Many other orthopaedic disorders can be presented or confused with genetically traced conditions. My daughter has McKune-Alright Sydrome. She also has scoliosis. MAS is not a factor of scoliosis but scoliosis can be an "out factor" of it. If you think you have or know of someone who has Marfan's, get in touch with a orthopaedic specialist dealing with genetic disorders. They have a checklist that may be reviewed. There are no tests rite now in the genetic areanas to verify true Marfans. Just like anything else in society now, a question is posed.....how much presentation factors have to be shown before you are diagnosed with a disease. cherie ______ 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: Elizabeth Mina Date: Tue, 26 May 1998 09:38:54 -0400 Subject: Re: Problem Dear Georgina, Probably the most important question is whether your spine is fully fused in spite of the fact that the screws are loose. As far as I've been told, the screws are put there to position the vertebrae to fuse in a particular position & after that happens, the screws are not needed any more. As long as they are not causing you any problems, if doesn't matter if the screws are loose. At least this is what doctors have told me. I had just the opposite problem: after my fusion to the sacrum "took," the screws from the base of my spine into my pelvis began interferring with the way I walked. I left them in for 7 years anyway, dreading another surgery, which was a mistake. Although I had the screws removed a year ago, I have not been able to regain full hip flexibility. It seems like screws into the pelvis are problematic to just about everyone. I'd be interested to know if anyone with screws from spine into hip were EVER able to leave them in and not have something go wrong with them. Elizabeth Georgina Van Horn wrote: > Would appreciate any info about a problem I am having. I had A/P > surgery 9 months ago. Recent xrays show that the 2 screws holding the > rods at the base of my spine are coming out. The pelvic bones are too > ... ______ 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: Marla Dowdeswell Date: Tue, 26 May 1998 08:11:24 -0600 Subject: RE: consumer reporting - ------ =_NextPart_000_01BD887D.E0BFD600 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 7bit - -----Original Message----- From: Linda Racine [SMTP:lindaracine@earthlink.net] Sent: May 23, 1998 2:50 PM To: scoliosis-medical@ai.mit.edu Subject: Re: consumer reporting Allison and Mary... I feel we should be free to name names on this list. [Marla Dowdeswell] I too think that we should be free to name doctors on this list. If not for this list, I would never have been able to find a doctor. 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I will be having a post-op visit to the hospital in which they go through what to expect the day of the surgery and how to prepare, they take 5 hrs with you at the hospital and cover everything which is a great idea, so I expect any lingering questions will get answered then. I just got the "Scoliosis Handbook" from the library which I had on reserve for several weeks, finally came in and it has answered alot of my questions......great book. My tentative surgery dates are July 7th for anterior and July 14 for posterior. I have such a mix of emotions going on right now and don't know how I am going to be ready in 6 weeks, feeling a little overwhelmed at all I have to do. I a have a 5 year old and a 2 and half year old and as you can imagine have alot of things to work out. I also just found out yesterday that they were in contact last Saturday (all day) with 2 kids that now have the chicken pox. I pray they don't come down with this as I really don't need that added to the list. Just trying to take one day at a time and not "freak out". Thanks again to all who responded. Kathy Stott ______ 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: Thomas & Kelley Moore Date: Tue, 26 May 1998 10:06:57 -0700 Subject: Marfans and Scoliosis/Abnormal Aorta/Spondylolisthesis I went to the Marfans site and found it very interesting. Although I don't think I'm a candidate for the syndrome, I did find that I meet some of the criteria. One of the topics that caught my attention was regarding the aorta. I don't quite understand all of the medical lingo, or what the malfunction of the aorta is that they are referring to, but I do remember the physical that was done prior to my initial surgery, found that I had a very prominent aorta. The doctor actually noticed it when he was listening to my stomach with the stethoscope and noticed the pulsating of my aorta very close to the surface. I kind of laughed, because I never thought much of it but always thought that it was funny to watch my stomach pulsate like that when I was lying down. It's kind of right below my sternum. The doctor immediately sent me to have a sonogram to determine whether or not I had an aneurysm! They decided that I did not have an aneurysm, but that my aorta was just pushed abnormally to the surface as a result of my Scoliosis. Has anyone else had this happen to them? I had forgotten about it until I read the Marfans site. I do have a heart murmur, but I've been told that a lot of people do and it's normal. I am tall and slender, but then a lot of people in my family history are, also. My feet have very high arches and when I lie down on my back my feet tend to hang forward and down like I'm pointing them, but I'm not, they are in that position when I am relaxed. The doctors usually make a note of this during a physical examination. Nothing is wrong with my eyesight rather than slight astigmatism. I just found out on my last doctor's visit that I have spondylolisthesis. That vertebra that slides forward on my bending films is cracked. I think it's L-4 or 5 (I'm not looking at the x-ray right now). Dr. Shook said this was very common with people that have Scoliosis. Does anyone else have this? He said it explains why I have so much pain, though. I can't find a whole lot on the Internet about spondylolisthesis. Any suggestions? I did think that http://www.rad.washington.edu/BOOKS/Approach/Scoliosis.html was an excellent site on explaining Scoliosis from a radiological point of view. It covers the different types of curves, vertebral rotation, and details about how to measure the degrees using the Cobb method. After reading it I think I could even measure it myself! :o) Kelley ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Marla Dowdeswell Date: Tue, 26 May 1998 10:45:55 -0600 Subject: terminology - ------ =_NextPart_000_01BD8893.772DC420 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 7bit Could anyone please tell me what the following terms mean to scoliosis patients? ostiotomy thorcoplasty corpectomy decompression Thanks, Marla - ------ =_NextPart_000_01BD8893.772DC420 Content-Type: application/ms-tnef Content-Transfer-Encoding: base64 eJ8+IjkQAQaQCAAEAAAAAAABAAEAAQeQBgAIAAAA5AQAAAAAAADoAAEIgAcAGAAAAElQTS5NaWNy b3NvZnQgTWFpbC5Ob3RlADEIAQ2ABAACAAAAAgACAAEEkAYA6AEAAAEAAAAQAAAAAwAAMAIAAAAL AA8OAAAAAAIB/w8BAAAAVwAAAAAAAACBKx+kvqMQGZ1uAN0BD1QCAAAAAHNjb2xpb3Npcy1tZWRp Y2FsQGFpLm1pdC5lZHUAU01UUABzY29saW9zaXMtbWVkaWNhbEBhaS5taXQuZWR1AAAeAAIwAQAA AAUAAABTTVRQAAAAAB4AAzABAAAAHQAAAHNjb2xpb3Npcy1tZWRpY2FsQGFpLm1pdC5lZHUAAAAA AwAVDAEAAAADAP4PBgAAAB4AATABAAAAHwAAACdzY29saW9zaXMtbWVkaWNhbEBhaS5taXQuZWR1 JwAAAgELMAEAAAAiAAAAU01UUDpTQ09MSU9TSVMtTUVESUNBTEBBSS5NSVQuRURVAAAAAwAAOQAA AAALAEA6AQAAAB4A9l8BAAAAHQAAAHNjb2xpb3Npcy1tZWRpY2FsQGFpLm1pdC5lZHUAAAAAAgH3 XwEAAABXAAAAAAAAAIErH6S+oxAZnW4A3QEPVAIAAAAAc2NvbGlvc2lzLW1lZGljYWxAYWkubWl0 LmVkdQBTTVRQAHNjb2xpb3Npcy1tZWRpY2FsQGFpLm1pdC5lZHUAAAMA/V8BAAAAAwD/XwAAAAAC AfYPAQAAAAQAAAAAAAACsW8BBIABAAwAAAB0ZXJtaW5vbG9neQC5BAEFgAMADgAAAM4HBQAaAAoA LQA3AAIAZAEBIIADAA4AAADOBwUAGgAKACwANQACAGEBAQmAAQAhAAAANTZDOTFDRkFDNDg4QkQx MUEwMzgyRTE0NjY4NDJFMEUALQcBA5AGAAwEAAAhAAAACwACAAEAAAALACMAAAAAAAMAJgAAAAAA CwApAAAAAAADAC4AAAAAAAMANgAAAAAAQAA5ACCmu8DFiL0BHgBwAAEAAAAMAAAAdGVybWlub2xv Z3kAAgFxAAEAAAAWAAAAAb2IxcCa7SNbAfSFEdGYiOtkyjBrfQAAHgAeDAEAAAAFAAAAU01UUAAA AAAeAB8MAQAAABEAAABtYXJsYUBuZXQxZnguY29tAAAAAAMABhA93tSPAwAHEHwAAAAeAAgQAQAA AGUAAABDT1VMREFOWU9ORVBMRUFTRVRFTExNRVdIQVRUSEVGT0xMT1dJTkdURVJNU01FQU5UT1ND T0xJT1NJU1BBVElFTlRTP09TVElPVE9NWVRIT1JDT1BMQVNUWUNPUlBFQ1RPTVlEAAAAAAIBCRAB AAAABAEAAAABAABeAQAATFpGdZnmO8MDAAoAcmNwZzEyNQYyAPgLYG5nNDEwOjUB9yACpAPjAgBj aMEKwHNldDAgBxMCgGZ9CoAIyCA7CW8OMDWzAoAKgXVjAFALA2MAQfMPAg9QMzMLpwqxCoAIUShs ZCAAcHkCIGUgCQtQZWERMCB0ZWwzAyAHgCB3EQAFQHRodxdQAhAYAG8D8A8gF9Fyjm0EIAeAA5F0 byAE8LkG8GlvAJAEIAqwdAiQeQIwcz8WRBZEGsAbMG/5GkBteRZEGLAFsAWgC1F3HHAc5QWhcAWQ HLgFgm2+cAlwBBAasAuQG7lUEQDwbmtzLAXQCsALYBuqBRHxACLQAwAQEAAAAAADABEQAAAAAAMA gBD/////QAAHMMAapJvFiL0BQAAIMMAapJvFiL0BCwAAgAggBgAAAAAAwAAAAAAAAEYAAAAAA4UA AAAAAAADAAKACCAGAAAAAADAAAAAAAAARgAAAAAQhQAAAAAAAAMABYAIIAYAAAAAAMAAAAAAAABG AAAAAFKFAAC3DQAAHgAlgAggBgAAAAAAwAAAAAAAAEYAAAAAVIUAAAEAAAAEAAAAOC4wAAMAJoAI IAYAAAAAAMAAAAAAAABGAAAAAAGFAAAAAAAACwAvgAggBgAAAAAAwAAAAAAAAEYAAAAADoUAAAAA AAADADCACCAGAAAAAADAAAAAAAAARgAAAAARhQAAAAAAAAMAMoAIIAYAAAAAAMAAAAAAAABGAAAA ABiFAAAAAAAAHgBBgAggBgAAAAAAwAAAAAAAAEYAAAAANoUAAAEAAAABAAAAAAAAAB4AQoAIIAYA AAAAAMAAAAAAAABGAAAAADeFAAABAAAAAQAAAAAAAAAeAEOACCAGAAAAAADAAAAAAAAARgAAAAA4 hQAAAQAAAAEAAAAAAAAAHgA9AAEAAAABAAAAAAAAAAMADTT9NwAAJ7o= - ------ =_NextPart_000_01BD8893.772DC420-- ______ 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: Thomas & Kelley Moore Date: Tue, 26 May 1998 10:06:57 -0700 Subject: Marfans and Scoliosis/Abnormal Aorta/Spondylolisthesis I went to the Marfans site and found it very interesting. Although I don't think I'm a candidate for the syndrome, I did find that I meet some of the criteria. One of the topics that caught my attention was regarding the aorta. I don't quite understand all of the medical lingo, or what the malfunction of the aorta is that they are referring to, but I do remember the physical that was done prior to my initial surgery, found that I had a very prominent aorta. The doctor actually noticed it when he was listening to my stomach with the stethoscope and noticed the pulsating of my aorta very close to the surface. I kind of laughed, because I never thought much of it but always thought that it was funny to watch my stomach pulsate like that when I was lying down. It's kind of right below my sternum. The doctor immediately sent me to have a sonogram to determine whether or not I had an aneurysm! They decided that I did not have an aneurysm, but that my aorta was just pushed abnormally to the surface as a result of my Scoliosis. Has anyone else had this happen to them? I had forgotten about it until I read the Marfans site. I do have a heart murmur, but I've been told that a lot of people do and it's normal. I am tall and slender, but then a lot of people in my family history are, also. My feet have very high arches and when I lie down on my back my feet tend to hang forward and down like I'm pointing them, but I'm not, they are in that position when I am relaxed. The doctors usually make a note of this during a physical examination. Nothing is wrong with my eyesight rather than slight astigmatism. I just found out on my last doctor's visit that I have spondylolisthesis. That vertebra that slides forward on my bending films is cracked. I think it's L-4 or 5 (I'm not looking at the x-ray right now). Dr. Shook said this was very common with people that have Scoliosis. Does anyone else have this? He said it explains why I have so much pain, though. I can't find a whole lot on the Internet about spondylolisthesis. Any suggestions? I did think that http://www.rad.washington.edu/BOOKS/Approach/Scoliosis.html was an excellent site on explaining Scoliosis from a radiological point of view. It covers the different types of curves, vertebral rotation, and details about how to measure the degrees using the Cobb method. After reading it I think I could even measure it myself! :o) Kelley ______ 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: "Carla E. Barnett" Date: Tue, 26 May 1998 12:12:10 -0500 Subject: Re: June surgeries and bone maturation Carol I know this is a very stressful time for you all. My prayers and thoughts are with you. We have a daughter who will be 15 Aug28. So the age and bone maturation caught my eye. Her degree is 52 thoracolumbar. They only checked her arm length from finger tip to tip and said she could grow 3 more inches. She's 5'5". I am only 5'3" and my husband is about 5'11." Also, she just started mensus this month. Am I understanding that the more they have left to grow the more the chances of the curve worsening? I'm confused. We really want to avoid surgery and are considering the Copes brace if she is a candidate. How old is your daughter now? What type of brace did she wear? Will you tell me what type of instrumentation they are going to use? Strange, but right now our daughter's biggest fear is giving her own blood. Little does she know! My scoliosis is giving me fits too. We are "all" totally stressed. If you can help us "beginners" I'd appreciate it. Carla - ---------- > From: carol lytle > To: scoliosis@ai.mit.edu > Subject: June surgeries and bone maturation > ... ______ 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, 26 May 98 13:24:23 -0500 Subject: Re:Blood Donation Susan, you are the only other person I've heard of who's having to do 6 units! I did too. And let me say, YES, CALL that blood bank!, because when I woke up after the operation the first thing I asked was how many of those units did they need and they said how they hadn't been able to find the 4 frozen ones and so just used the 2 fresh (one of which was contaminated by fever and shouldn't have been used.) ARG! It had been such a battle getting those 6 in! I wish they had let me know they were too stupid to arrange getting the blood to the operation without me prodding them. Good luck with your donation, do you *really* need 6? If there's anyway your surgeon will agree to less than 6, take 'em up on it, because giving so much blood so rapidly really exhausted me at least! Also, maybe find a local juice bar and splurge on getting juices of spinach/kale/parsley/etc. every day to help with the iron... I found meat a lot more effective myself. >:) Good luck!! I can't imagine 6 units in 5 weeks... !! Is this really what your surgeon prescribed?? 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: "Katherine Parrish" Date: Tue, 26 May 1998 17:20:11 GMT Subject: Hehehe Anna~ How bad is your scoliosis? That is cool that you can dance and know people that can still dance even with scoliosis. Your flowers were cute :) and so were your tap shoe :) ~katherine a.k.a Kat :p Yo, Wutz up homeslice! ______________________________________________________ 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: "Katherine Parrish" Date: Tue, 26 May 1998 17:32:23 GMT Subject: Re: Celebrities with scoliosis >-Rachel- Who was Renee Ruso? I know I've heard of her before. That is so cool. I don't want to offend anyone on this chat/a-mail-thing Was it the black one or one of the white girls? I'm just curious. That's it. Please, if I have offended anyone..I am terribly sorry. ______________________________________________________ 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, 26 May 1998 14:46:38 EDT Subject: Re: Blood Donation In a message dated 5/26/98 12:57:18 PM Eastern Daylight Time, zeteo@sirius.com writes: << Susan I was under the Impression that auto Blood only had a shelf life of about 45 days... And I havent heard that you need to call hospital the day before surgery to see if your Blood is there for you..... But like said before everyplace is different... My question to That would be what if they tell you No it isnt? Are you then supposed to cancel surgery until they find out what happen to your blood????? Ask as many questions as you can when you go in for your first donation..Your right that isnt something you need to be worried about the day before Surgery. 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: "Katherine Parrish" Date: Tue, 26 May 1998 17:20:11 GMT Subject: Hehehe Anna~ How bad is your scoliosis? That is cool that you can dance and know people that can still dance even with scoliosis. Your flowers were cute :) and so were your tap shoe :) ~katherine a.k.a Kat :p Yo, Wutz up homeslice! ______________________________________________________ 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: Linda Racine Date: Tue, 26 May 1998 13:05:39 -0700 Subject: Re: Blood Donation Jenn... I did 7 units. My doctor wanted 8, but my veins gave out after 7, so one of my brothers donated the last one. I did the 7 units in 8 weeks. I think I only used 3 or 4 during surgery, and none after. 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: stephanie demblon Date: Tue, 26 May 1998 22:28:42 +0100 Subject: Re: Marfans and Scoliosis/Abnormal Aorta/Spondylolisthesis > I just found out on my last doctor's visit that I have spondylolisthesis. >That vertebra that slides forward on my bending films is cracked. I think >it's L-4 or 5 (I'm not looking at the x-ray right now). Dr. Shook said > ... I've heard that's very common too...it's not my case,but I understand that cause real pain... Is your doctor offer you a treatment for this ? I know that usually,when the vertebra slides too much there is a risk for the spinal cord... one of my friend had a plaster cast for few weeks to prevent more damage because of this... wish you a good luck stephanie ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: stephanie demblon Date: Tue, 26 May 1998 22:21:09 +0100 Subject: Re: Hypermobility > I have been told that I am hypermobile, and that this charactistic is > also found in many scoliosis patients -< > > ... I'm hypermobile too...but my ortho. (I have seen him today) think that's a quality,not a flaw ! I don't know who is right but each ortho. had their own criterias for possible surgery.You can believe me,I've experienced it ! ;o) stephanie ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Linda Racine Date: Tue, 26 May 1998 14:10:02 -0700 Subject: Re: terminology Hi Marla... Osteotomy - Removal of a wedge of bone from a vertebra Thorocoplasty - Removal of parts of any number of ribs to reduce the size of a rib hump Corpectomy - ? Decompression - What it sounds like. The space between vertebrae is widened. If you want to try to figure out what a corpectomy is, you might try a seach of Yahoo (http://www.yahoo.com). I did one and came up with 185 hits. I looked at a few, but couldn't figure it out. I'm sure if I looked at all the hits, I could figure it out. None of the Glossaries I have contains corpectomy. Good luck! If you figure it out, be sure to let us know. 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: RSMVMD Date: Tue, 26 May 1998 17:42:19 EDT Subject: Re: Blood Donation I would say that it is a good idea to check and make sure that your blood is at the hospital of your surgery at least a day or two before the surgery date. I've heard some real horror stories in regard to this not being done; however, I currently forget the details. It would also be important to check if you donate the blood in one Red Cross region (that's if you have the Red Cross do it), and you are having your surgery in another Red Cross region, as the blood would go from Red Cross region headquarters #1 to Red Cross region headquarters #2 even before it gets to the hospital's Blood Bank! I'm not sure what the transport method is when the blood is donated at a private (for profit) company. 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: "Gail Walsh" Date: Tue, 26 May 1998 17:35:35 -0500 Subject: Re: Marfans and Scoliosis/Abnormal Aorta/Spondylolisthesis Hi Kelley, I too have a heart murmur that was congenital. It has never bothered me and is considered "innocent". I have regular electrocardiograms and echos to make sure it is not changing. I have always wondered how related it was to my scoliosis and most doctors think there might be a connection but are unable to specify what. 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: RSMVMD Date: Tue, 26 May 1998 18:12:34 EDT Subject: Re: corsets Megan, I've gotten a "back support belt" from my local Orthopedics' office. I've found that some doctors tend to keep a supply of this type of item in their office and others do not. In the past (pre-surgery, that is), I got one at Sears. Those tend to be more like the ones that people who do a lot of lifting have, i.e., those employed at Home Depot. I hope that this is helpful :)! Richard S. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: R.N.A.@att.net Date: Tue, 26 May 1998 18:46:34 +0100 Subject: Re: terminology Here's the definition of corpectomy: CORPECTOMY - Removal of the body of a vertebra. The body is the solid bony mass, almost circular in appearance, that forms the front part of each vertebra. from: http://www.tylerneuro.com/glossary.html ______ 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: Halavah2@aol.com Date: Tue, 26 May 1998 19:20:25 EDT Subject: Re: Roe's Remarks About Pain in the Morning Hi Debra, Thanks for the input and i agree with you...I have this air mattress that I use on occassion, you know the ones most people use for camping...Well I have used it in the past and found that I woke up in less pain and discomfort...Imagine, the air mattress cost about $20 and my bed cost about $800...I have also now made it a habit to stretch before i get out of bed.. Thanks again Regards Roe ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Halavah2@aol.com Date: Tue, 26 May 1998 19:49:28 EDT Subject: Re: falls Hi Again Debra, Funny you should mention that because I was thinking that all the falls i took might have caused the scoliosis...I fell from the top of the monkey bars hit every bar on the way down...I also fell off a swing while standing up and riding high...But then again I think too that it might have already been there because i was falling so much, my balance must have been off...And scoliosis and growth spurts do throw off your balance...Who knows! Regardless I have 2 curves to deal with...I guess anything is possible... Thanks for listening Roe ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Halavah2 Date: Tue, 26 May 1998 19:59:33 EDT Subject: Re: new to list Hi Shannon, Its going on 3 months now...Be sure to check with your doctor first...And always take it after a meal preferrably in the evening after dinner...Its in a tablet form... Good luck Keep me posted Regards, Roe ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Halavah2 Date: Tue, 26 May 1998 20:14:57 EDT Subject: Re: Marfans and Scoliosis/Abnormal Aorta/Spondylolisthesis Hi Kelley, I found this in the aol medical dictionary....Try looking up diseases of the joints...It might be listed under that or Rheumotology....Anyway heres the true definition.. I have a similiar condition as a result of scoliosis...I have 2 compressed discs which i guess can lead into this condition... - ---------------------------------- spon*dy*lo*lis*the*sis (noun) : forward displacement of a lumbar vertebra on the one below it and esp. of the fifth lumbar vertebra on the sacrum producing pain by compression of nerve roots let me know if you find a good sight!!! Regards, Roe ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: LinLou41 Date: Tue, 26 May 1998 21:53:38 EDT Subject: Re: Roe's Remarks About Pain in the Morning how do you unscribe this newsletter, I have tried many, many times. This does not concern my problem. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Jewel2346 Date: Tue, 26 May 1998 23:01:51 EDT Subject: Re: Marfans and Scoliosis/Abnormal Aorta/Spondylolisthesis Hey I'm not sure about your spondyliosis but I know about scoliosis I mean I have it and I hate having it its really hard because recently when I bend I get pains luckily mine is in the thoracic region and not in the lumbar so in a way I'm lucky but in another way I'm not because its more noticeble everytime I look at someones back I think what I would give to have a back like that but its just a dream that won't come true ever so put it out of my mind your thing sounds way more severe sorry that I can't help u but keep searching thanks Sharon ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Debgwest Date: Tue, 26 May 1998 23:04:14 EDT Subject: Re: Spondylolisthesis Kelly: In a message dated 98-05-26 13:25:20 EDT, you write: << I just found out on my last doctor's visit that I have spondylolisthesis. That vertebra that slides forward on my bending films is cracked. I think it's L-4 or 5 (I'm not looking at the x-ray right now). Dr. Shook said this was very common with people that have Scoliosis. Does anyone else have this? He said it explains why I have so much pain, though. I can't find a whole lot on the Internet about spondylolisthesis. Any suggestions? >> How interesting you have spondylolsisthesis. My x-rays found it when I was 16 or so. I've always been scared my vertebra would slide off if I did too much (didn't stop me though). It is in my lower back - not sure which part, it's been years since I've even looked at the x-rays. Debra ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Silberkrmf Date: Tue, 26 May 1998 23:23:02 EDT Subject: Re: The Spine Thanks for the picture, Karen ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Kathy Mayhall Date: Tue, 26 May 1998 23:57:00 -0400 Subject: Re: The Spine Could anyone on this list tell me if their harrington rod has failed them..and how it failed..and what they did to fix it..My hook at the bottom of the rod as jiggled around so much it has made the space they put it in large...and when I do anything...and I mean just about anything, that would move my spine causes a total outage...Sick of being babied, would like just to feel half way normal..I need to know what they can do for me..and would like to talk to someone that has had the problem first hand... Silberkrmf wrote: > > Thanks for the picture, > Karen > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Jennifer Parker Date: Tue, 26 May 1998 20:56:18 -0700 (PDT) Subject: RE: Help - First Day with Boston Brace - ---"Sell, Lois A." wrote: > > > Eva > ... my > daughter was in tears and said she couldn't do it anymore. Loosen it > up a bit so she can sleep, and as she gets more comfortable, tighten it > a hair more, gradually! > > Lois > ... than > > once. > > > > Thank you, > ... forth. > > My > > > daughter, Georgette, just turned 10 years old and we have been > > monitoring > ... the > > > proper terms for it) began at 10 degrees, and this past February was > > at 20 > > > degrees and then in end of April jumped to 30 degrees. Doctor > > prescribed > ... each > > night > > > for the next two weeks, until we work up to 16 hours. 11:30 last > > night we > ... that I > > was > > > suppose to get to (but at this point I didn't care, I just wanted > > her to > ... two > > hours > > > which I think was a mighty feat. I kept checking on her through > > those > ... she > > be > > > able to pick herself up from bed? Should she be able to turn from > > one > ... two > > > years. But I feel like everyone was telling me so many children > > never go > > > beyond 20 degrees so they never have to be braced. I was totally > ... sit, > > and > > > we need to be able to get through this, can anyone share some > > thoughts on > ... minimum > > of > > > every two weeks, is this the norm or what? > > > > ... What > > type > > > of doctor could do the testing? > > > > ... "scoliosis-request@ai.mit.edu" with one line of text: "help". > > ______ > For help on using this list (especially unsubscribing), send a message > ... Hello and good luck. I didn't wear a Boston Brace but I did wear a Milwalkee Brae and I found that by gradually getting used to the brace it was a help. My doctor prescribed an air conditioner to use in my room during the Summer to make sleeping more bearable. The first night I had to sleep in the brace I was up almost all night but eventually I didn't even remember I was wearing the brace. My doctor told me this would happen and I thought he was crazy but HONESTLY it does get easie, keep up the good work and good luck!] Jennifer :-) _________________________________________________________ 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-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: judy@believers.org Date: Tue, 26 May 1998 19:09:09 +0000 Subject: Re: A/P surgery Kathy, You will be in my thoughts and prayers in the coming weeks. I feel your surgery will go smoothly and you will be just fine. I'm a 46 year old female who will have A/P surgery in Oct. with Dr. Bridwell in St. Louis. Oct. 15 for anterior and Oct 20th for posterior. Dr. Bridwell explained to me that a combined surgery could take 13 to 16 hours (I will be fused to the sacrum with screws to the pelvis) and that he cannot always get the entire surgical team to stay for the duration. (It's a fact of life that nurses and medical technicians have family responsibilities too.) Dr. Bridwell said that during these long procedures, he ends up doing some of the most critical parts of the surgery with a skeleton crew and they are all completely exhausted. I, too, was disappointed to have 2 surgeries but since Dr. Bridwell explained the situation to me, I am at peace with it. I was told that I would stand on the day after both surgeries and I am not having anterior instrumentation. I plan to question Dr. Bridwell further about standing without the hardware to support me. God bless! Judy > From: "Kathy Stott" > > Thanks to everyone who responded to my questions about blood donation and > ... ______ 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: SilverRD Date: Tue, 26 May 1998 22:38:21 EDT Subject: Re: June Surgery hi Henry- In my case cell-saver, which recovers the lost blood, would not have been adequate - I donated 6 units starting 2 months befoe surgery (2 units were frozen) I needed 3 units in the OR and another 2 units post-op. The 6th unit was tossed because I did not need it and it could not bbe used in the regular blood donation program becuase the standards for hemoglobin is lower for the autologous program. Hope this helps. ann 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: SilverRD Date: Tue, 26 May 1998 22:38:28 EDT Subject: Re: Blood Donation Hi Susan - Before my surgery, I was concerned that my 6 units got to the hospital blood bank, considering all the handling of the blood before it gets to the final destination. I called the blood bank one week before surgery - they would not talk to the patient only the doc. When I asked the doc's surgical coordinator , she did not have the time and told me I can call as though it was from his office. So, I did not lie I told the blood bank, "I calling for Dr. Boachie's ofiice on a patient's autologous blood." I found out they only had 4 units - theytold me the other 2 would be by the surgical date. Good luck! ann 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: Jewel2346 Date: Tue, 26 May 1998 22:54:04 EDT Subject: Re: Celebrities with scoliosis Renee Ruso was the blonde chick that was in the monkey movie and the movie Tin cup but does she seriously have scoliosis I never new it and I never saw it before So do you have scoliosis ? 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: Jewel2346 Date: Tue, 26 May 1998 22:52:09 EDT Subject: Re: Hehehe Hey my name is Sharon and I have scoliosis in the thoracic region 52degrees and I have tried wearing the brace but I don't like it very much so I don't really wear it I tried physio but I don't think that will work my specialist said that no exercise will correct so I have heard rreally bad things about the operation so here I am 17 having scoliosis and I feel really ugly especially whne I see everyone elses back I think what I would do to have such a nice straight back anyway I'm kind of used to it now so thats all I have to say now 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: "Carla E. Barnett" Date: Tue, 26 May 1998 22:39:53 -0500 Subject: Re: Hehehe Kat, My scoliosis is thoracic to left at 2 degrees and lumbar to the right at 52 degrees. Its not near as bad as some of the other peoples curves but the doctors still want me to have surgery. But whatever we do, I won't give up my dancing. I have been in it since I was three which makes me be dancing for 11 years. Thanks for writing me, maybe we can talk sometime :) C-Ya Later Anna~a.k.a. Anna (haha) Bye - ---------- > From: Katherine Parrish > To: scoliosis-teens@ai.mit.edu > Subject: Hehehe > ... 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: R.N.A.@att.net Date: Wed, 27 May 1998 00:09:11 +0100 Subject: Surgery I just wanted to thank all who have been so helpful on this list. A lot of questions were answered, new information discovered, and support readily available. I went for my PAT today. It was certainly a long day. In addition to the regular stuff (EKG, blood work, X-ray...), I met with an anesthesiologist, the director of social services, had a conference with the nurse on the orthopedic floor and gave my last unit of blood. I am impressed with the way things were handled at the hospital (Montefiore-Albert Einstein) today--I pray my stay there is just as good. Surgery is still set for June 1, will call Friday for confirmation and definite time. Will return to posting as soon as I feel up to it after surgery. Have lots to do between now and Monday. Bye for now-- Lynne ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Linda Racine Date: Tue, 26 May 1998 21:49:02 -0700 Subject: Re: Surgery Hi Lynne... If we don't "talk" again before Monday, I (and I'm sure, everyone else) wish you the best of luck. Hope you have as easy a time as Cathy did. Is there someone who can post your progress to the list, or can you email a phone number of someone I can call to check on your progress? 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: Silberkrmf Date: Tue, 26 May 1998 23:21:41 EDT Subject: Re: new to list Dear Sima, What you are doing so far is the right track. Get as much information as possible till you are comfortable. Make sure you are comfortable with the doctor. My daughter is 61/2 and has a S curve with the top 25 and the bottom 22. She has been in a Boston Brace since November and the curves are currently 14 and 12. She wears the brace 23 hours and really complains. She never had pain but was picked up by my pediatrician at her yearly exam because she wanted to practice he r full back exam on a young child. We got lucky too. Good lUck with the process. Karen ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: zeteo@sirius.com Date: Wed, 27 May 1998 00:03:38 -0700 Subject: Re: Blood Donation Thanks everybody who wrote about blood donation. Ann S. thanks so much for the clue about how to contact the blood bank. I know I would have gotten really annoyed to have called long distance and then have them tell me, Sorry, we can't talk to you! That is so typical though. I have found that often the right hand doesn't know what the left hand is doing. I did my first unit today. It went well. I don't feel tired or anything. My hematocrit ? was 43. It has to be at least 33 to give, and this was without me even having taken any iron supplements beforehand. I go again next Tuesday a.m. I am now taking iron, so it will be interesting to see what the level is then. Richard S. Yeah, I am dealing with two different regional blood banks. So, I really need to keep tabs on where my blood is. Linda M. I wondered the same thing. What do I do if they do lose or toss my blood? Besides throw a royal fit, I don't think there is much choice except either cancel or have volunteer blood, which I really don't want to do. They will be freezing my blood, so that when I need it in August it will be there. Hopefully ! I have had a lot of surgery, and gotten a lot of blood. All of it in the time before they did routine testing for all those nasty diseases. In fact, I was sent a letter recommending I have an HIV test done. Imagine my shock then when the first test came back POSITIVE ! Thank God, a second test, the Western Blot came back NEGATIVE. That is the definitive test, if it is NEGATIVE they are sure you are. I am also NEGATIVE for Hepatitis. So, as you can tell, I think I have dodged the bullet enough. Nobody is putting anyone elses blood in me unless it is an absolute emergency. I just don't want to take the risk if I don't have to. Susan ______ 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 #840 ************************ 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.