From: bounce-scoliosis To: scoliosis-digest@ai.mit.edu Subject: scoliosis V1 #941 Reply-To: Errors-To: bounce-scoliosis Precedence: bulk scoliosis Saturday, 5 September 1998 Volume 01 : Number 941 Today's subjects for scoliosis, scoliosis-medical, scoliosis-child and scoliosis-teens: Re: Charleston Brace ["Sherri Linsenbach" ] Re: Update on Hayley's second opinion ["Margie Stelzer" ] Re: guinea pig surgery [Margaret Arth ] Re: Bike riding ["A & S G." ] Re: recovery time [RBerk1382@aol.com] Re: FROZEN SHOULDERS ["Kjellman, John V" ] UPDATE [R.N.A.@worldnet.att.net] Re: Planning for pre-op and post-op surgery ["Georgina Van Horn" ] alive and well [Holly Ingram ] Holly [Linda Racine ] ---------------------------------------------------------------------- From: "Sherri Linsenbach" Date: Fri, 4 Sep 1998 07:48:01 -0400 Subject: Re: Charleston Brace Michelle, My son, 19, has been in the Copes brace for about 10 months, and it has done a tremendous amount of good for him. He had a 50 degree thoracic curve and 43 degree lumbar. Both were reduced by about 15 degrees by the 6-month point. His rib cage is now moving back into better alignment as the spine continues to straighten. Since your son's curves aren't that advanced, I would definitely recommend the Copes brace and program to correct his curves. In conjunction with the total Copes program, the Copes brace straightens the curve and rib cage, and helps the entire body become healthy once again. In addition, it strengthens and trains the body to hold the corrections. Before the Copes brace, at age 17, my son's curve suddenly went from 40 degrees to 50 degrees in just 10 months, so be sure to have your son's curve monitored closely as he goes through "growth spurts". Information on the Copes brace and program is available at http://www.scoliosis.com. They have a toll-free number you can call to receive their information. Sherri L. sherril@abac.com ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Margie Stelzer" Date: Fri, 4 Sep 1998 08:22:11 -0500 Subject: Re: Update on Hayley's second opinion Allison: Last August, Spencer, then 20 months, had a 30 degree curve that progressed to 34 degrees by December. He was diagnosed w/ congenital scoliosis with a hemi-vertibrae between L-2 and L-3. The spine was also starting to rotate and second curve was beginning below the curve. The first ped. ortho scoliosis specialist we went to said he wanted to wait until Spencer was school-aged (at least 9 or 10) before he decided on surgery. After the curve progressed, he said maybe when he was 4 or 5 years old. The second opinion said he doesn't like to recommend surgery on a first visit because it may be interpreted as being "knife-happy" but he thought surgery would be needed sometime in the next year to prevent the spine from rotating more, a condition that cannot be easily corrected with surgery and to stop the secondary curve below the hemi-vertibrae. If we waited and the curves progressed, a longer fusion would be needed. Then I found out I was pregnant and we thought we had better get the surgery done before the baby is born and I before I became to big. So, we scheduled surgery for this past March. Spencer, now 2 and 1/2 has only a one level fusion and his curve was corrected to 10 degrees. We're hoping this holds on it's own but are probably looking at periodic bracing through his growth years. I'd much rather have Spencer braced than go through another surgery. Much of the spine's flexibility and shock absorption is in the lumbar area so the more that can be preserved there, the better the long term quality of life. Deciding on surgery was very difficult because Spencer's curve was not threatening severe deformity, disability or illness, yet. But, the sooner we did it, the better chance of a nearly complete correction with little loss to his height and discs. We are hoping that we have saved him from a future life of back pain, illness and/or disability. Margie ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Bogima@aol.com Date: Fri, 4 Sep 1998 09:52:51 EDT Subject: Re: Planning for pre-op and post-op surgery Hi Sheila, I had scoliosis surgery nine months ago at the age of 56. My surgery is different from yours, but from what I've seen, recovery is similar. In addition to everything that's been said to you here so far, you will need some assistive devices after surgery. These are wonderful devices that make life a lot easier. First of all, talk to your doctor about getting a hospital bed at home for the first couple of months. I had one in the living room which gave me much more contact with people than being stuck in my bedroom. Besides, as much as I love my husband, the idea of being in bed with him at the beginning of my recovery period was just unimaginable. I could not have withstood any movement in bed and the idea of his touching my back by mistake while asleep - well, it was a lot easier just to be in a different bed. My insurance company paid for the bed. You'll also need a shower seat, preferably without a back, a long handled shower nozzle, a couple of long grabbers to pick things up off the floor and a shorter one as well - it helps in getting stuff out of the refrig, a long handled shoe horn, a gizmo to help put socks on, and a a raised toilet seat with arms. You can get this stuff through a medical supplly store. There are also several catalogues you can use. The ones I like best are Adaptability, 800-288-9941 and Smith and Nephew, 800-558-8633. I also got the foam wedge that goes under you knees when you sleep on your back. I find it stays in place a lot better than a pillow. Satin pajamas are a wonderful idea - it makes turning in bed so much easier. I spent a lot of time before surgery stocking my freezer with cooked food. It kept me busy before surgery and made things a lot easier for my husband afterwards. These a tough times for you, but you seem to have a very good, positive attitude, which helps a great deal. This surgery is, to put it mildly, a bummer, but I am so glad I did it. I am not back to old my old self at nine months post-op, but I am a heck of a lot better than I was before surgery and I still improve daily. Good luck to you. Keep in touch and do post any questions you have. Who are your surgeons? 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: Cathy Lutz Date: Fri, 04 Sep 1998 09:58:12 -0700 Subject: FROZEN SHOULDERS Roberta, You mentioned having "frozen shoulders" after surgery. That pretty much describes my shoulders 4-months post-op--frozen in a forward position. They refuse to move, unless I concentrate on making them move. When I move them, they seem to tug at the upper hardware where hooks and a crossbar are located. Formal PT is now finished so I'm on my own to get things back in shape--which means daily exercising, including shoulder rolls. Do you have any suggestions to unfreeze the shoulders? BTW, with a mostly lumbar curve, I hadn't expected to have any problems in the upper back since it was pretty much "normal" prior to surgery. It was a surprise to find out the fusion extended up to T6--higher than expected... Cathy [cwlutz@erols.com] ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Margaret Arth Date: Fri, 4 Sep 1998 11:36:56 -0400 (EDT) Subject: Re: guinea pig surgery I was also at a teaching hospital as well. The week before my surgery I had an appt w/my surgeon for about 2 hrs to ask all my questions. When I met with him, one of his residents was tagging along. This got me kind of nervous. So I asked him if my surgeon was performing the op or his resident...or if they "share" the op time. He definitely understood my concerns and Dr. W. asked the resident "who is performing the operation?" Res. "You are." Dr. W. "who is performing the operation?" Res. "You are." Dr. W. "III can't heeere you" Res. "You are Dr. W." Dr. W. "And will you in any way shape or form do any part of the operation?" Res. "Absolutely NOT, sir." Sooo, as you can see, he made this very clear that he was going to be the only one. The agreement that I signed also stated this. It sure put me at ease, as I certainly didn't want anyone else touching me. (though of course I know there are other people who do, but it's a different function). - --Megan ______ 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: "A & S G." Date: Fri, 04 Sep 1998 09:16:07 -0700 Subject: Re: Bike riding What great advise!!! I would have done it-----and been sorry I am sure. I did not know one needed to be fitted for these bikes. Thank you for your knowledge Carol. susan t 09:16 AM 9/3/98 EDT, you wrote: > >Do not buy a bike on the Internet! >C.P. ______ ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: RBerk1382@aol.com Date: Fri, 4 Sep 1998 12:52:54 EDT Subject: Re: recovery time Hi Patty: My need for the walker was a total surprise to me. I was expecting to be able to return to work within three or four months. I think the walker was just because of general weakness. My surgery lasted 12 hours and I lost a lot of blood. I also contracted the common urinary tract infection from the catheter, and pleurisy from the deflated lung. I was up out of bed for my meals after five or so days. It's all kind of in a haze to me. So, no, I did not have specific restrictions, I just didn't have the capability. I did not have a brace. This was determined during the surgery. I had been expecting one, but Dr. Boachie decided that it was not necessary. Hope this helps. Ask more if I didn't answer your questions. Roberta ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Kjellman, John V" Date: Fri, 04 Sep 1998 16:12:22 -0400 Subject: Re: FROZEN SHOULDERS Dear Cathy Lutz: I don't have scoliosis, my daughter does, but I have had two frozen shoulders, first one, then the other. Worked it out starting with physical therapy, but found swimming (crawl/freestyle stroke mostly, but some backstroke) was just as effective as the PT, more convenient, and less expensive. I have no idea if your frozen shoulder is from same cause as mine, but if you can you might consider swimming as way to loosen your shoulders. Regards, John Kjellman johnk@victorex.com ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: R.N.A.@worldnet.att.net Date: Fri, 04 Sep 1998 19:29:04 +0100 Subject: UPDATE Just an update to let some of you know about my return to work. I returned to work this week--exactly 3 months after surgery. All in all I feel better than I thought I would but definitely not like my "normal" self. I'm a 44 yr old high school science teacher (in answer to a previously asked question). Normally there is a lot of bending, twisting and lifting. However I do none of that at the moment. The people in my department have been great in helping unpack and store my supplies, and helping me prep the labs. The custodians are also aware of my situation and deliver items to me. The principal and vice-principals are very understanding. I have adjusted my teaching style to my present condition so as I don't tire too easily. I also pace my activities during the day. I informed my students that I had spinal surgery and asked for their cooperation in class. I avoid student contact--not in the halls the same time as the students, etc. If I'm tired I go to the clinic and rest (as I did yesterday since that burning sensation in the shoulder returned). I'm at work from 7 AM to 3 PM. Park in a handicapped space for easy access to the building. My home routine is also adjusted. I need to nap for about an hour or so when I get home and afterwards I don't do anything strenuous. I find that it's important to really slow down when I get home. I do find that my shoulder muscles and some back muscles tighten by the end of the day, I feel some pinching throughout the back and ribs hurt from where the graft was taken. I do find myself getting tired. However my back doesn't hurt--it's more muscle discomfort and fatigue. My hips start to hurt a bit if I'm standing too long-so I alternate between standing and sitting. I'm really glad that I had all that PT prior to surgery--it really helped not only with the recovery but also back at work. There is only one drawback--too many people said I look great, in fact some didn't know I had such extensive surgery. Unfortunately this is taken as an indication that I feel just as good--I wish! There are so few people who really understand what this type of surgery is all about, the physical and emotional sides of the recovery, and length of recovery. Those that do also find it amazing. Education and exposure are definitely needed. 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: "Georgina Van Horn" Date: Fri, 04 Sep 1998 18:44:25 PDT Subject: Re: Planning for pre-op and post-op surgery Bonnie, Just read your email to Sheila. You are right on with all the devices you recommend. I was fortunate and had 5 days of rehab before coming home and they gave me most of them and arranged for me to rent and buy more. I also had a hospital bed that we put in the dining room because of our stairs. I had my surgery at 55 exactly one year ago. I had the full spine fused from neck to sacrum. My screws in the sacrum are coming out so I'm looking at more surgery in the near future. How extensive was your surgery?? I've started back to work and it's OK but I pitch forward because of the loose screws and it's tiring to walk. The best to you. GEorgina ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: KBrad98536@aol.com Date: Fri, 4 Sep 1998 23:24:59 EDT Subject: Re: Second time around??? Good luck with your surgery. I understand Dr. Hu is a wonderful surgeon. The draw back is being in a hospital over Christmas with this type of surgery. Not many doctors are usually available over the holiday. I was transferred from UCSF to Mt. Zion/UCSF rehab the 20th of Dec. last year where I stayed until 1/10/98. My surgeries were 12/3 & 12/8/97. It was extremelly difficult to be in the hospital over Christmas because of a lack of staff...I suggest you ask before surgery to understand what will be available to you if needed. Your in good hands with Dr. Hu. Kay ______ 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: Holly Ingram Date: Fri, 04 Sep 1998 23:53:11 -0400 Subject: alive and well Hi all, I know there are many who are not big on details. I am home and home 5-6 days sooner then expected. I had a wonderful orthopedic episode to my surgery in the 25th but 5 hours into it i started to bleed with great zeal all my body functions became extremely critical and just by the grace of god i am still here. Boy were they shaken up. I entered up with some pretty massive treatments that resulted in other problems it took them 3 days to correct. But by friday i was happy and chatting and in very little pain. Sleeping on my tummy. LOL my favorite place. Surgery this week monday was kind of a hold your breath and see procedure but all went well . After the anterior surgery on monday i was sleepimg on my swollen tummy by wednesday night. Dr Kostuik just could not get over that fact and i must say my tattoos were a major hit with the docs. Off all heavy pain meds by wednesday i figured i might as well get home to my family. I must say today was a bit scary buts its midnight, i got in at 4pm and have been computing since about 6pm except for dinner. I am hot and sore and now tired but i really feel well. They have decided since bone wise all went to well i will not have to be flat in bed for three months but will be able to sit in a wheelchair as soon as i feel up to it i think after the weekend. I am taking darvon for pain and doing great. Talk to you all soon and any privates for details are ok with me. I am so glad this part is finally over. Hollyi ______ 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: Holly Ingram Date: Fri, 04 Sep 1998 23:53:11 -0400 Subject: alive and well Hi all, I know there are many who are not big on details. I am home and home 5-6 days sooner then expected. I had a wonderful orthopedic episode to my surgery in the 25th but 5 hours into it i started to bleed with great zeal all my body functions became extremely critical and just by the grace of god i am still here. Boy were they shaken up. I entered up with some pretty massive treatments that resulted in other problems it took them 3 days to correct. But by friday i was happy and chatting and in very little pain. Sleeping on my tummy. LOL my favorite place. Surgery this week monday was kind of a hold your breath and see procedure but all went well . After the anterior surgery on monday i was sleepimg on my swollen tummy by wednesday night. Dr Kostuik just could not get over that fact and i must say my tattoos were a major hit with the docs. Off all heavy pain meds by wednesday i figured i might as well get home to my family. I must say today was a bit scary buts its midnight, i got in at 4pm and have been computing since about 6pm except for dinner. I am hot and sore and now tired but i really feel well. They have decided since bone wise all went to well i will not have to be flat in bed for three months but will be able to sit in a wheelchair as soon as i feel up to it i think after the weekend. I am taking darvon for pain and doing great. Talk to you all soon and any privates for details are ok with me. I am so glad this part is finally over. Hollyi ______ 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: Fri, 04 Sep 1998 22:50:05 -0800 Subject: Holly Holly... I have to tell you... I read your letter with my mouth hanging open. REALLY. I can't believe how quickly you're back with the living. Congratulations on your quick recovery. Hope it continues to go as well as it's started! 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 #941 ************************ 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. 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