From: bounce-scoliosis To: scoliosis-digest@ai.mit.edu Subject: scoliosis V1 #1330 Reply-To: Errors-To: bounce-scoliosis Precedence: bulk scoliosis Saturday, 25 September 1999 Volume 01 : Number 1330 Today's subjects for scoliosis, scoliosis-medical, scoliosis-child and scoliosis-teens: Re: Working with Pain Management Doctor [Bogima@aol.com] Re: Pain Management (Andrea) ["Andrea Ishigami [Health Technology]" ] Waterbeds? [Carol Anderson ] Re: Post Op Depression [VSlaybaugh@aol.com] Re: Post Op Depression (Carol/Tina) [Rockdigs@aol.com] Re: Working with Pain Management Doctor ["Karl E. & Penny Coan" ] Re: Depression, Mood Swings, Fatigue ["Sherri Linsenbach" ] Anger (Valerie) [Susan Whitmore ] Scoliosis Links page [Susan Whitmore ] Hemivertebrae [Jenjen7272@aol.com] Waterbeds? [Carol Anderson ] Re: Height [Karen Pilmer ] Re: Height [Karen Pilmer ] Re: Waterbeds? [CRBwow@aol.com] ---------------------------------------------------------------------- From: Bogima@aol.com Date: Fri, 24 Sep 1999 10:25:16 EDT Subject: Re: Working with Pain Management Doctor Hi Carol, In addition to what George has already said, make sure to tell the doc about any sleeping problems you've had. Sleeping problems can indicate insufficient pain relief. Also, make sure to tell the doc about your reaction to each and every pain med you've tried. And know the number of millegrams of the meds you've taken. Good luck!! 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: "Andrea Ishigami [Health Technology]" Date: Fri, 24 Sep 1999 10:32:19 -0500 Subject: Re: Pain Management (Andrea) Dear Carol, Thanks for the support! I'm just so frustrated and tired. It's been six years of constant pain and due to that, other things have also gotten screwed up such as my endocrine system. I'm feeling worse and worse every day to the point where I debated early retirement and am still thinking about working only part-time if they'll give me enough money to support myself! I guess the most frustrating part is that I have always felt so young and have always been so active and now I like nothing better than to lie in my recliner and sleep and watch TV all day! Getting to work is a monumental chore (some days I work from home so I can lie down periodically) and thankfully no one has said anything about my coming in late and leaving early. This is not the life I want but the fatigue is so overwhelming, I really can't fight it. Good luck to you also. I hope your pain management works well. Please keep me up to date on how and what you are doing. 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: Amanda Daly Date: Fri, 24 Sep 1999 09:54:45 +0100 Subject: Re: In response to Elizabeth Mina - --------------2F6742298CF5107F9CA1E9A5 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit Hi Nancy, I had a spinal fusion 4 years ago and just read your email, Could you please tell me what is crankshafting I have never heard of this condition??? I also agree with you I think it is better to have surgery earlier rather than later if you are told by the doctors that the spine is likely to keep progressing. I sometimes wish I had my surgery when I was 45 degress and not waited till I was 68 and even at that degree I only got a 30 degree reduction. Thanks Amanda Jeff + Nancy Kennedy wrote: > Elizabeth,I wanted to respond to what you said about avoiding surgery > especially for those with small curves. I, wholeheartedly, agree that > surgeons certainly don't give their patients enough information about > ... - --------------2F6742298CF5107F9CA1E9A5 Content-Type: text/html; charset=us-ascii Content-Transfer-Encoding: 7bit Hi Nancy,

I had a spinal fusion 4 years ago and just read your email, Could you please tell me what is crankshafting I have never heard of this condition??? I also agree with you I think it is better to have surgery earlier rather than later if you are told by the doctors that the spine is likely to keep progressing. I sometimes wish I had my surgery when I was 45 degress and not waited till I was 68 and even at that degree I only got a 30 degree reduction.

Thanks
Amanda
 
 

Jeff + Nancy Kennedy wrote:

Elizabeth,I wanted to respond to what you said about avoiding surgery especially for those with small curves. I, wholeheartedly, agree that surgeons certainly don't give their patients enough information about future implications of surgery. I would also like to state that it goes the other way too. Sometimes waiting too long is not good either. The year before my daughter had her surgery she was at 55 degrees. It took a year to finally get a action plan from the surgeon and by then she was at 80 degrees. Because they had to break apart her old fusion from five years ago and remove her hemivertebrate she only was corrected to 30 degrees. I can't help but wonder if she would have had a better correction if this had been done a year earlier when we first discovered her spine was crankshafting. This is such a complex disease. One thing I thankful for is that my daughter's new surgeon is a new breed and so open and honest about what could happen in the future. I sometimes feel frustrated that my daughter had to go through two surgeries. If she had the surgery she had in June the first time which actually eliminated the cause of her scoliosis (the hemi-vertebrate) I am pretty sure that she would be much straighter than she is now. And she would have only had one surgery to have gone through.Nancy
- --------------2F6742298CF5107F9CA1E9A5-- ______ 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 Anderson Date: 24 Sep 99 12:50:41 PDT Subject: Waterbeds? Does anyone know whether a waterbed is good, bad or whatever for a a post-op spinal fusion patient? Thanks. Carol in La Puente CA ____________________________________________________________________ Get your own FREE, personal Netscape WebMail account today at http://webmail.netscape.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: VSlaybaugh@aol.com Date: Fri, 24 Sep 1999 18:08:42 EDT Subject: Re: Post Op Depression In a message dated 09/23/1999 5:49:19 PM Pacific Daylight Time, ceeanders@netscape.net writes: << I am six weeks post-op and have been fighting depression BIG TIME. Most of the time, the bad feelings seem to come from out of the blue and I will find myself saying, is it going to be like this FOREVER? Then I start thinking about all the other things in my life that I am not happy with. And a lot of those things are NO BIG DEAL when one steps back and takes a look at them. but they seem like a big deal to me. And so then I am miserable and sobbing away! >> Carol, It is so interesting to see how you expressed your post-op depression. I also battled post-op depression from my 4th week post-op in almost exactly the same ways you described it for you. I would sit and cry and think that I would always be that way and it wouldn't get any better. Nothing anyone did for me pleased me. We had bought new living room furniture for better comfort in my recovery period and I hated that, too, after it finally arrived during my 3rd week post-op. I think a lot of that had to do with the new smell of the furniture and it turned my stomach. We kept it covered with quilts for almost another 6 weeks before I was able to stand the smells again. At almost 6 weeks post-op my family doctor put me on a prescription of Paxil for 6 months for my depression. He told me that it was not uncommon for people who had gone through the type of surgery that I did to develop depression in the recovery stage. He said it was something biological. I just wish I had known prior to surgery that depression was a possibility and maybe I wouldn't have been so surprised by it. Anyway, the depression did subside and of course things got a lot better over time. I think my big turning point in my recovery came at the end of my 6 weeks post-op...when my doctor gave me the OK to drive again. That was my "ticket to freedom" once again and I began feeling more dependent and less dependent on others. And once I got off the narcotics and on to only Tylenol by the end of my 8th week post-op, then I really began to get my old appetite back and my old self back. The narcotics sure had an effect on me. Thanks for sharing. It was nice to see that others also experienced what I went through. Vicky fused T2-L1, 2/23/98, Isola rod instrumentation ______ 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: Rockdigs@aol.com Date: Fri, 24 Sep 1999 15:20:28 EDT Subject: Re: Post Op Depression (Carol/Tina) Dear Carol, When I read about your problems my heart goes out to you. You should not have to be dealing with this at 6 weeks post op. My surgeon did not try to cut back my pain meds for 3 months, after that my family doctor gave me Vicodin 3 x a day, and he still prescribes Vicodin for me now. I don't know how you can even function at all. They say to walk as much as you can at first, but how can you even feel like it if you are in so much pain. I forget your age, but your fusion was long and your degree was very severe. The older you are, of course plays a big big part, & your curve was very severe. We also are all very different. I remember my doctor told me that he was surprised when he operated on me that my bones were very very hard & strong, & that the operation before mine on another woman, that her bones were a lot softer than mine. I was corrected from 91 and 78 degrees to 57 and 53 degrees, only a 40% correction-probably because of my age, I was 38 at the time. How can you exercise & get better if you don't feel like moving because of your pain? I would like to see how they would feel. They don't know what it's like to have rods put in your back. I hope that the pain clinic will prescribe pain medication for you because that is what will help you to feel like getting up and going for that walk. You do need to move & exercise to promote healing and recovery. Good luck, Sandy in Colorado ______ 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: "Karl E. & Penny Coan" Date: Fri, 24 Sep 1999 13:06:08 -0700 Subject: Re: Working with Pain Management Doctor This is a multi-part message in MIME format. - --------------93D6B95E0A4A812F5A6E8EE0 Content-Type: multipart/alternative; boundary="------------EDD6C792FCB9924A07E4523C" - --------------EDD6C792FCB9924A07E4523C Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit Hello; my name is Karl several years ago I had a teompary pain pump installed it gave me total pain relief. I was a victim of a violent crime in I was shot in 66 in 85 I underwent a fusion that did not take. The Dr. found I had scolsis and several other spinal problems the pump help them all you might ask you Dr. about it, they only use it as a last resort but it works I also was put on a drug that was not approved at the time but it sure worked. The Dr. I have been seeing is Dr. Edward Talmage in Houston, Texas phone # (713) 4961006 he is a pain manage specialist Iif you want further info. give him a call he is very good. Good Luck Karl Coan ------------------------------------------------------------------------ Carol Anderson wrote: > Hello, All! > > Thanks to EVERYONE and believe me, I got tons of support and great advice when > ... - --------------EDD6C792FCB9924A07E4523C Content-Type: text/html; charset=us-ascii Content-Transfer-Encoding: 7bit Hello; my name is Karl several years ago I had a teompary pain pump installed it gave me total pain relief. I was a victim of a violent crime in I was shot in 66 in 85 I underwent a fusion that did not take. The Dr. found I had scolsis and several other spinal problems the pump help them all you might ask you Dr. about it, they only use it as a last resort but it works I also was put on a drug that was not approved at the time but it sure worked. The Dr. I have been seeing is Dr. Edward Talmage in Houston, Texas phone # (713) 4961006 he is a pain manage specialist
Iif you want further info. give him a call he is very good.
 
 
 

Good Luck
Karl Coan


Carol Anderson wrote:
Hello, All!

Thanks to EVERYONE and believe me, I got tons of support and great advice when
it came to dealing with this post-op pain!

I finally got approval and even an appointment to see a Dr. Rothman with
Cedars-Sinai Pain Center in Los Angeles next Monday, Sept. 27.

For those of you who have dealt with or are under the care of a pain
management specialist, I would greatly appreciate any guidance, advice or tips
to make sure that the meeting with Dr. Rothman is as productive as possible.

Thanks in advance!
Carol in La Puente CA

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  - --------------EDD6C792FCB9924A07E4523C-- - --------------93D6B95E0A4A812F5A6E8EE0 Content-Type: text/x-vcard; charset=us-ascii; name="vcard.vcf" Content-Transfer-Encoding: 7bit Content-Description: Card for Karl E. & Penny Coan Content-Disposition: attachment; filename="vcard.vcf" begin: vcard fn: Karl E. & Penny Coan n: Coan;Karl E. & Penny org: Big Planet adr: 15707 Spruce Point Drive;;;Houston;Texas;77084;U.S.A. email;internet: coank5531@bigplanet.com title: Independent Representatives' I.D. # 3632586201 tel;work: 281 859 7559 tel;fax: 281 859 7933 tel;home: 281 8597 559 x-mozilla-cpt: ;0 x-mozilla-html: FALSE version: 2.1 end: vcard - --------------93D6B95E0A4A812F5A6E8EE0-- ______ 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: Marie Jones Date: Fri, 24 Sep 1999 11:41:02 -0400 Subject: Re: Working with Pain Management Doctor I had a first appointment at a pain management center on Wed of this week. My advice would be to think about exactly how to describe your pain before you go...is it sharp? grinding? constant? intermittent? If they give you a pain scale that asks you to choose these kinds of words, ask them for a description of any term you aren't sure of. "Lancinating" has a specific meaning. I discovered that my pain is "grinding" in their terms, although I wouldn't have used that as a personal description. One chapter of the following book gave good descriptions of the terms: Back talk : how to diagnose and cure low back pain and sciatica / Loren Fishman and Carol Ardman It didn't address scoliosis specifically, and really wasn't much help in the treatment area, but it did cover the terms well, and made me more articulate when I saw the pain management doc. Marie ma_jones@muskingum.edu Reference & Bibliographic Instruction Librarian Muskingum College, New Concord OH (740)826-8157 (office) (740)826-8404 (fax) ______ 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: "Stabin" Date: Fri, 24 Sep 1999 07:54:10 -0300 Subject: Re: I just found out I have to get surgery Lisa, Surgery's not too painful, after a while. The first day, all I could do was lay there, I couldn't turn on my side or anything, and it hurt SO much, but that could be because the nurses got the dosage instructions for my pain medication wrong. Once the anesthesiologist found out and corrected it, I was much better, except that twice they gave me these intramuscular injections that were supposed to help with the pain but all they did was make my arm ache SO bad for an hour afterwards. But you probably won't have to have those. Another thing that helps after surgery is to ease back in to your normal activities. Like I only stayed an hour and a half my first day at school, but I kept adding time to that until I could stay for a whole day. I managed to get back into school about a month after surgery, but most of the other people I hear talking about their surgeries say that it was more like six weeks before they went back to school. (I'm a little confused about this; why did everyone else have a longer recovery time than me?) Laura stabin@hotlink.com.br 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: Funky2317@aol.com Date: Fri, 24 Sep 1999 16:31:06 EDT Subject: Replies,Surgery a clue what is going on? I have a few questions for anyone with surgery: 1. Can you swim afterwards? Rollerbalde? Ride roller coasters? Dance? Bend? Twist? Ride horses? Play sports? 2. How many doctors do the surgery? Is it just your doctor and a nurse? 3. Is there any therpy involved afterwards? 4. How many days in the hospital? How long until you can go back to doing everything? Thanks, Liz Funky2317@aol.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: Sunflwrbjs@aol.com Date: Fri, 24 Sep 1999 17:13:26 EDT Subject: Re: Height I thought I was kinda short but I am 5'5 and a half and I might grow a little taller. No offense to the rest of you a course. You guys must have huge curves because mine is 30 and 15 degrees. Well, Just thought I would put my 10 cents in. Bethany For help on using this list (especially unsubscribing), send a message to "scoliosis-teens-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Sherri Linsenbach" Date: Fri, 24 Sep 1999 11:47:14 -0400 Subject: Re: Mineral testing Re: Mineral testing Pam, To determine the levels of minerals, toxic minerals, etc., you can have a hair analysis test. This costs approximately $50, can be done by reputable nutritionists, naturopathic physicians, or chiropractors, takes only a few minutes, and the test results come back fairly quickly. Sherri Linsenbach SherriL@abac.com ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Sherri Linsenbach" Date: Fri, 24 Sep 1999 12:03:43 -0400 Subject: Re: Depression, Mood Swings, Fatigue Re: Depression, Mood Swings, Fatigue Jennifer, Some researchers believe that mood swings, depression, and chronic fatigue often go along with scoliosis. This is probably due to the hormonal problems that some with scoliosis experience. An endocrinologist would be able to determine if you're experiencing any hormonal problems, and would be able to treat it accordingly. Also, nutritional problems can also lead to mood swings, insomnia, depression, fatigue, etc. These include low tissue calcium (sometimes caused by hormonal problems), low copper, low iron, as well as other nutritional deficiencies. Our son (who has scoliosis) had several nutritional deficiencies and experienced some of these problems. He has digestive problems and problems with absorbing some of these minerals, so it is something he will have to continue to treat and monitor. Scoliosis is a very complex condition, but a doctor who understands the complexity of it will be able to treat it properly. Hope this helps. Sherri Linsenbach SherriL@abac.com ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Brande" Date: Fri, 24 Sep 1999 11:13:14 -0700 Subject: Re: Post surgery question Hi Everybody, How are you? I had Phatom Pains in mostly my Right Shoulder Blade area after both Sets of Anterior and Posterior Spinal Fusions that I had! For me they lasted quite a long time....and I still get them every once in awhile! There were no rhyme or reason to them, they were kind of like a stabbing, electric pain! It may be different for her, but that is how it was for me! Take Care, Brande b_l_p@My-deja.com In the last 3 days she has complained about a very sharp >pain in her left shoulder area. The pain seems to occur with little or no >notice and there is no consistency to bring it about in terms of her activity >at the time. I am wondering if it would have something to do with all the > ... - --== Sent via Deja.com http://www.deja.com/ ==-- Share what you know. Learn what you don't. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Susan Whitmore Date: Fri, 24 Sep 1999 09:38:52 -0700 Subject: Anger (Valerie) Hi Valerie - You asked: "I was wondering about toileting, reaching everything she needs when in the restroom, and stepping up to get on the bus." We haven't found these things to be a problem. The brace stops slightly below hip-bone level but slightly above where the leg bends, so it doesn't affect how high she can lift her knee. Also doesn't affect sitting (on either chairs or toilet) - just make sure you get underwear a size bigger than usual so the waistband can go over the brace - then it's easy to pull down. The thing she'll have to adapt to when reaching for things is bending from the hips rather than from the waist. Actually, the only thing my daughter has trouble doing is putting on socks and shoes with the brace on. There is a really good picture of the brace on the Boston Brace Co. website, which will give you a good idea what you'll be dealing with. It's at www.bostonbrace.com. I also really recommend the Scoliosis Links page at http://users.cybercity.dk/~nmb10880/scoliosis.html All best wishes, Susan ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Susan Whitmore Date: Fri, 24 Sep 1999 09:42:15 -0700 Subject: Scoliosis Links page I just want to publicly thank Claus and Jeanette for their fabulous work on the Scoliosis Links page at http://users.cybercity.dk/~nmb10880/scoliosis.html I recommend it highly to everyone, especially those new to this list and looking for information - truly a wealth of info at your fingertips! - --Susan in OR ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Jenjen7272@aol.com Date: Fri, 24 Sep 1999 14:35:18 EDT Subject: Hemivertebrae Since joining this list a week or so ago, I have heard the term "hemivertebrae" several times. I still don't know exactly what it means, can someone please enlighten me? Thank you. Jennifer ______ 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 Anderson Date: 24 Sep 99 12:50:41 PDT Subject: Waterbeds? Does anyone know whether a waterbed is good, bad or whatever for a a post-op spinal fusion patient? Thanks. Carol in La Puente CA ____________________________________________________________________ Get your own FREE, personal Netscape WebMail account today at http://webmail.netscape.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: Karen Pilmer Date: Fri, 24 Sep 1999 20:57:47 -0400 Subject: Re: Height For health class we had to do all these different measurements of my body and mine says I'm gonna be 5'8 so now I'm kinda confused. Erica Funky2317@aol.com wrote: > Erica > 5' 6 is not short at all! Average for a women is 5' 4. Be tall stand proud! > My mom had friends who are like 5 foot , you will be tall! > ... 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: Karen Pilmer Date: Fri, 24 Sep 1999 21:00:21 -0400 Subject: Re: Height I am exactly as tall as my mom. Erica Stabin wrote: > Erica- > 5'6" isn't short at all! I'm 5'6", or pretty close, and my mom says that > that's the perfect height for a woman since it's about the height that most > ... 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: CRBwow@aol.com Date: Fri, 24 Sep 1999 21:13:36 EDT Subject: Re: Waterbeds? This is just a thought, but wouldn't the test be whether the waterbed is helpful in maintaining whatever position it is that is most comfortable for your surgical site? It would seem to me that there is not a great deal of support to provide a stable platform for you to lay on, in a water bed. However, not having had surgery like that, I can only theorize, and maybe the stable support is not what your body needs at this point. Any place where you can go and lay on a water bed for a while, just to try it out, and see what your body thinks? Seems to me that would be a logical approach. Maybe even clear it with the manager of a store that sells water beds. Heck, if it made your back feel better, that might even be a bonus for him if he could say he had someone who bought the bed, specifically because her recently operated upon back felt better on it than on a regular bed. Just a thought or two. No real experience to draw upon. Blessings, Cecile ______ 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 #1330 ************************* 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.