From: bounce-scoliosis To: scoliosis-digest@ai.mit.edu Subject: scoliosis V1 #1296 Reply-To: Errors-To: bounce-scoliosis Precedence: bulk scoliosis Wednesday, 25 August 1999 Volume 01 : Number 1296 Today's subjects for scoliosis, scoliosis-medical, scoliosis-child and scoliosis-teens: Re: [Re: under the brace] [BoxtEnigma@aol.com] Allison & her EMG [Alyssa ] Dallas Readers please! [c j day ] Correction to previous post [Rufus Brown ] Re: Scoliosis Postings [RSMVMD@aol.com] Re: Intro- NancyH and Toby ["Elizabeth DeGirolamo" ] RE: Scoliosis Postings ["Bufkin, Charla C WES" ] Re: Scoliosis Postings ["Dean Hoppenrath, D.C." ] Re: scoliosis V1 #1294 [DocGroovy@aol.com] Nancy/Toby [Mary Kirkpatrick ] Re: [Re: [Re: under the brace]] [lauren.olson@usa.net] Kim / Christopher [Mary Kirkpatrick ] Lots to write.... ["Nikki :" ] RE:Potty Training [kelly drake ] Undershirts [SusieQ013@aol.com] Body Cast ["m.stelzer" ] Re: Allison & her EMG [prfbones@att.net] TIMING FOR SURGERY [Cathy Lutz ] Re: Body Cast [CRBwow@aol.com] Pain Medications Walking [RSMVMD@aol.com] Pain Medications Walking [RSMVMD@aol.com] Re: Pain Medications Walking [Linda Racine ] The brighter side of surgery [Lori ] [none] [Steve Hughes ] re: Copes, Dr. Deutchman in New York! ["neemi kim" ] Re: Pain Medications Walking [CRBwow@aol.com] [none] [Steve Hughes ] Taylor Update - long [Ezrich@aol.com] Re: Allison & her EMG ["Joseph Boatman" ] Pain meds walking ["Craig Salisbury" ] ---------------------------------------------------------------------- From: BoxtEnigma@aol.com Date: Tue, 24 Aug 1999 00:12:42 EDT Subject: Re: [Re: under the brace] Laura, I've been trying to figure out that same thing. I wish I knewn how it was made. I think it does have a seem but one thats very small. The fabric itself isn't solid. It's a woven pattern so it stretches. I think the 2 sides were just woven together. But I couldn't tell you for sure. -Sabriel 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: Alyssa Date: Mon, 23 Aug 1999 23:11:21 -0500 Subject: Allison & her EMG Hi Allison, As I recall your EMG was today. How was it? Do you feel a bit like a voodoo doll after enduring all of those needles? No doubt you're relieved that it's over - I always have been after one of those. Alyssa ______ 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: c j day Date: Mon, 23 Aug 1999 01:30:51 +0530 Subject: Dallas Readers please! A request from my wife and daughter: They would like to consider starting or joining a local Dallas/Ft. Worth Scoliosis patient support group that might actually at some point meet at some central location occasionally. Age, gender, etc. should not matter. I think the idea is that sometime moderated conversations like this among national and international respondents might have a slightly different effect and they are interested to see if there might be a possibility of some local collective benefits to this type of local support group. Also if you have any experience with this sort of thing in your local area, you might drop us a note. Please respond directly by email: wa5ekh@Juno.com. Jeff Day, and Family ___________________________________________________________________ Get the Internet just the way you want it. Free software, free e-mail, and free Internet access for a month! Try Juno Web: http://dl.www.juno.com/dynoget/tagj. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Rufus Brown Date: Tue, 24 Aug 1999 05:44:50 -0400 Subject: Correction to previous post Hi all, In reference to caring for the skin under the brace, I remarked that I soak in the tub at night with baking powder in the water. I meant to say baking SODA! Sorry. Cathy with a "C" 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: RSMVMD@aol.com Date: Tue, 24 Aug 1999 08:02:58 EDT Subject: Re: Scoliosis Postings In a message dated 08/23/1999, 9:16:53 PM, JaymnDad@aol.com writes: <> Due to the fact that a number of ISP limit the number of characters that the subject of an email can have, it is (at times) difficult to always include "Scoliosis" in the subject. May I suggest that you UNSUBSCRIBE from this list by sending an email to scoliosis-REQUEST@ai.mit.edu, put a dash "-" in the subject line, and "unsubscribe" in the message area. THEN, subscribe to the digest (which combines all four lists (this list, scoliosis-medical, scoliosis-teens, and scoliosis-child) into one email which posts at about 3AM ET). The digest says "scoliosis" in the title. To subscribe to the digest, send an email to scoliosis-digest-REQUEST@ai.mit.edu, put a dash "-" in the subject area, and "subscribe" in the message area. This should take care of your "little problem" with scoliosis postings :-). Richard S. Maryland (about 30 miles outside of Washington, DC) ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Elizabeth DeGirolamo" Date: Tue, 24 Aug 1999 07:19:40 -0400 Subject: Re: Intro- NancyH and Toby Welcome to the list! My daughter, Sarah, is also 25 months old. She had an operation for laryngomalacia done when she was three months old! Is this a coincidence? She has one curve, thoracic, at 68 degrees. it was my doctor (Dr.. Sanders) at Shriners hospital in Erie that does not like growing rods too well. I asked him about using one as an option. He said that many of his patients have come to him from other doctors with problems with their rods. They can cause spontaneous fusion of the vertebrae, they can work themselves off, they can protrude out of the back/skin, they can cause a lot of pain in the back and extremities. This was all in his words. Sarah has a doctor at the Cleveland Clinic that wants to do this operation(growing rod). We see him again in September and will tell him NO. From parents to doctors, everyone agrees, try to stall the operation as long as you can (every child's situation is different, determining when an operation must be performed.) Because of this, we are going to go with casting for Sarah and then into a Milwaukee brace. (She currently is in a Boston.) This may mean that we will only delay her surgery until next year. But hopefully we can wait much longer. Elizabeth ______ 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: "Bufkin, Charla C WES" Date: Tue, 24 Aug 1999 07:20:30 -0500 Subject: RE: Scoliosis Postings I'm sorry you are having a problem with too many E-Mail messages. If there is someone in your household that has a need to be on the scoliosis listing why don't you use a "free" E-Mail service that is available on the internet. I know there are several out there. One is "JUNO" and others are "Caremail" "Wildmail" and "Snailmail." The three I just mentioned don't cost anything and benefit endangered animals. I you had a free E-Mail site you could subscribe to the scoliosis lists just at that site and not have to worry with it interfering with your regular E-Mail. It is only a suggestion and I am just trying to be helpful. Charla Bufkin ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Dean Hoppenrath, D.C." Date: Tue, 24 Aug 1999 10:35:14 -0500 Subject: Re: Scoliosis Postings But you can set up a filter that will cause all of these messages to go into a special scoliosis folder based on the TO: entry. - ----- Original Message ----- From: To: Sent: Monday, August 23, 1999 7:24 PM Subject: Re: Scoliosis Postings > > You can not look at the To portion unless you open the email! > > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: DocGroovy@aol.com Date: Tue, 24 Aug 1999 11:41:37 EDT Subject: Re: scoliosis V1 #1294 Hello! I just wanted to interject something for those of you who are interested in the Copes Program . . . > >From: RSMVMD@aol.com >Date: Sun, 22 Aug 1999 21:30:20 EDT > ... Actually, Dr. Copes has three offices (Baton Rouge, LA; San Diego, CA; Tampa Bay, FL). However, for those interested in his program, there are over 79 Copes Casting Centers throughout the country. My office is one of them. Most of my scoliosis patients who begin the Copes program, have never met Dr. Copes, and have never had to travel outside of the Dallas area. If you are interested in finding out more about the Copes program, go to . Most of your questions will be answered there. After you have seen the Copes web site, call his office at (800) 726-8869. They can tell you where the nearest Casting Center is to your home. Thanks! Dr. VanderWerff ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Mary Kirkpatrick Date: Tue, 24 Aug 1999 09:06:58 -0700 (PDT) Subject: Nancy/Toby Nancy Thanks for sharing your story and photos of Toby. He is very adorable, beautiful - what amazing eyes. Boy - - you guys have been through a lot. Toby is 6 days older than my little boy (Ben) - born 6/16/97. Ben has congenital scoliosis that was first diagnosed a couple of weeks after his 1st birthday - he had fusion surgery on October 6th and was in a cast for five months. It was a horrible time for us - a nightmare. Thankfully we have been able to have a great summer and put it at the back of our minds (kind of) - he had his cast removed on March 8th and our next appointment is September 13th. I am getting anxious about that appointment. Toby has obviously been through more than his fair share of doctors and hospitals. I hope and pray that things get a little easier for him. Although by the looks of him - he is as happy as can be. Will talk again. Mary === Mary Kirkpatrick __________________________________________________ Do You Yahoo!? Bid and sell for free at http://auctions.yahoo.com ______ 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: lauren.olson@usa.net Date: 24 Aug 99 12:17:35 EDT Subject: Re: [Re: [Re: under the brace]] Laura- Sorrie to but in but- i think they're kint that way. like normal cotton fabric have a little tiny knits, like a sweater, and instead of making flat sheets (like umm fabric) they make it a circle. well, i think thats it. buh bye Lauren "Stabin" wrote: Sabriel- How do they make the shirts without seams? I don't wear a brace, so I'm not going to get one of those shirts, but I'm curious about how they make them. It seems to me that it would have to have a seam somewhere. 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". ____________________________________________________________________ Get free email and a permanent address at http://www.netaddress.com/?N=1 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: Mary Kirkpatrick Date: Tue, 24 Aug 1999 09:15:03 -0700 (PDT) Subject: Kim / Christopher Kim When I first saw Ben in his cast 5 days after he had surgery - I did not know whether to laugh or cry! The waiting while his cast was been put on was awful - I diid not know what to expect. We did not know if he would come out with a head halo or not. We were very happy when the doctor came out and said he did not use the halo, but continued the cast up over half his head instead! I felt relieved, but when I saw him I did not know which would be worse - his head was bent severly over to one side with the cast, it looked as if it was cutting under his chin - he looked so uncomfortable. HOlding him was so weird and frustrating for the first week or so - I felt that I could not feel my little boy. But things got better - they cut a little under his chin and that made the cast more comfortable and also under his arms. I quickly got used to holding him and the weight. Also, I could feel him through the cast - I could feel his warmth and hugging him was beautiful. I could tickly his tummy and around his cast and his little legs. We had as much fun with the cast - we rolled him around, through him in the air and made the most of it. Dressing him was a chalenge at the begining - but I bought big t-shirts and cut one shoulder and he could wear big overalls. Ben's cast went from his hips to stop under one arm and the other side went over his shoulder to cover half his head. What I am trying to say is that the first couple of days with cast are not fun, Ben was uncomfortable, found it hard to sleep and I found it difficult to hold, feel, dress him etc.... But very quickly it felt normal and the most important thing was THAT I COULD REALLY FEEL MY LITTLE BOY THROUGH THE CAST. I also used In Between. i gave Ben a sponge bath every night and the cast never got really too bad. We also were give some extra cast covering - so when the area around his mouth got too messy, we could change the cast covering. We tried to spare it for special occasions!!! We had a few disasterious at the beginning with diarahhea and he got a tummy bug and threw up a bit att he beginning. But we dealt with that - my husband would hold him in the air and I would get a q-tip and scoop the dirt out from under the cast. Talk to you later - better stop and do some work.... Mary (Ben's mom - 2 years, congenital scoliosis. Fusion surgery last October - cast from October until March '99) === Mary Kirkpatrick __________________________________________________ Do You Yahoo!? Bid and sell for free at http://auctions.yahoo.com ______ 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: "Nikki :" Date: Tue, 24 Aug 1999 13:08:12 -0400 Subject: Lots to write.... Hey Guys, I just got back from a vacation with my family and i got 77 messages in one week. I am going to attempt to answer to some of them in one letter. Sorry if it is confusing. Okay, about the alcohol/baby powder/corn starch thing- My doctor prescribed this medicated powder to me. It helps by absorbing sweat and stopping itches. I find that it really does help. I was told though, not to use baby powder or any other lotions/soaps that soften the skin because it makes the skin more vulnerable. I also got un seemed undershirts from my doctor and although they are expensive they really help. Lauren, now that you mention it, i am not really quite sure exactly how it can have no seems in it, i will try to figure it out the next time i look at it. I think that the undershirts are like half Lyra which makes them s-t-r-e-t-c-h out a lot but also just enough to fit the size of an individuals body and the other half is cotton which helps to absorb sweat. The really neat thing about this undershirt is that they are specially designed for Boston braces. There is a little extra piece of material under the armpit on the side that the brace goes up high. I also have a different kind of undershirt. This one is also pretty good except it has seems in it. The good part about it is that it is long enough to go past my hips. Most regular undershirts just cover the top half of the body. Also the neck of this undershirt is low so that you cant see it underneath other shirts. I once tried mens T-shirts but they stuck out beneath my other clothes. The itching dilemma- I sometimes pull on my undershirt wherever it is itchy which causes enough friction to scratch the area. This works pretty well except if you do this too much the undershirts bunches up and then you have to take the brace off to pull it down anyhow. I think that i have come to the conclusion that being in a car for more than a half hour is excruciating(?) I just came back from riding in car for 8 hours and i really tried everything. I tried using a pillow, changing positions, changing seats... and nothing worked! So on that topic i have no advise! Sorry. Last, but not least, Laura, i just wanted to tell you how happy i am for you that your curve decreased. That is really great news!! nikki p.s. Sorry if this is too long.... i just thought it would be better this way! ___________________________________________________________________ Get the Internet just the way you want it. Free software, free e-mail, and free Internet access for a month! Try Juno Web: http://dl.www.juno.com/dynoget/tagj. 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: kelly drake Date: Tue, 24 Aug 1999 10:36:20 -0700 (PDT) Subject: RE:Potty Training Dear Allison Boy,can I relate! My daughter Abby age 21 months is in a TLSO body brace and although she is not old enough to potty train yet I have been wondering what the future holds. I want her to feel as independent as possible but because her brace fastens with velcro in the back she cannot get into or out of it by herself. I am going to ask my ortho in September because I'm wondering--if since her curve is a thoracic one--they can cut her brace up a little higher from the bottom. Maybe that will help. Sorry I can't offer any helpful advice, but if you learn anything along the way I would appreciate any suggestions! Kelly Drake __________________________________________________ Do You Yahoo!? Bid and sell for free at http://auctions.yahoo.com ______ 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: SusieQ013@aol.com Date: Tue, 24 Aug 1999 15:13:58 EDT Subject: Undershirts To all ~ I have a bunch of the seamless undershirts. I don't know how they make them but they really don't have a seam that would bother you under the brace. The shoulders have a seam but it's not under the brace. The fact that they have no seam is why they're so expensive -- mine were $50!! Maybe they weave the fabric in a tube when they make them. ~ SusieQ013 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: "m.stelzer" Date: Tue, 24 Aug 1999 14:17:12 -0500 Subject: Body Cast Kim: The type of cast you described sounds exactly like Spencer's when he had surgery. Hopefully, they will show you how to properly diaper him when you're in the hospital. If not, save this note. We had a very stinky, wet cast that needed to be changed after 4 weeks (under general anesthesia!) because we were not taught the right way to diaper a boy in a spica cast. You'll be using 2 diapers one to go over his penis only and the other to catch any B.M. or to catch urine that may have leaked out of the first diaper. First, take a folded diaper and cut a hole a little larger than the circumferance of his penis at the fold that runs horizontally between leg gatherings. Open the diaper. Slip the diaper over his penis through the hole so that the outside of the diaper is next to his skin. Fold the diaper closed to create a closed pocket. The penis should be inside the pocket with the absorbant side on the inside. This contains the urine and keeps it from getting on the cast. We used smaller diapers (newborns, I think) to reduce the bulk. Second, open the 2nd diaper. Fold the waistbands down to prevent moisture from wicking up the diaper into the cast. Tuck folded waistbands into cast and over "penis pocket" diaper. To keep the diapers in place, we got extra large diaper covers (used with cloth diapers) with velcro closures. We put that over the diaper, and over the hips of the cast like you would regularly use a diaper cover only it's over the much larger cast. Our covers didn't quite hold so we got surgical tape (there were rolls laying all over his hospital room and I lifted them whenever I saw one) to secure the side closures. Before you leave the hospital,have the nurses line the edges of the cast with waterproof hospital tape or "pink tape" or have them give you a couple of rolls to do yourself after you get home. The "pink tape" makes a nice smooth edge and protects the cast from moisture. The fiberglass cast has some rough edges and this tape covers those edges. Despite all efforts, the cast is bound to get wet with perspiration and an "accident" or 2 but hopefully it will stay dry enough to last as long as he needs it. After we learned the above diapering method, the cast stayed much drier! Margie (mother to Spencer 3 1/2 yrs, hemi-vertibrae excision and fusion surgery 3/98) ______ 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: prfbones@att.net Date: Tue, 24 Aug 1999 19:56:44 +0000 Subject: Re: Allison & her EMG Oh, it was a little like being a voodoo doll! My thigh is a bit sore, but all in all, it wasn't very bad at all. I think after having spine surgery so recently, I expect everything medical related to be just as painful. The nurologist said I have a slipped disc at L-5/S-1. So, right after the EMG, I went for a CT scan. The radiologist read the scan and said that there was clear evidence of a previous laminectomy complete with scaring! I've never had a laminectomy or even had surgery at that level! Mike LaGrone called that a "very bad misread". Oh, I called Mike and he said that Sandy is doing very well. He said her surgery was long, but that everything went well and she is recovering nicely. I'll try and call her tomorrow or the next day and see how she's getting along. *whew* I'm sending Mike a copy of the CT scan and he wants a myelogram and a urodynamic study before we talk treatment. yukk. At least the word "discogram" never issued from his mouth. Thanks for all the support everyone:-) I'm still answering letters, slowly but surely, please be patient with me. Abstracts for this meeting (American Society of Hematology) are due tomorrow, so I'll be more free after that. If anyone has any thoughts or messages they would like to pass on to Sandy, let me know, I'll tell her when I talk to her. Take care everyone:-) Allison > >Hi Allison, >As I recall your EMG was today. How was it? Do you feel a bit like a >voodoo doll after enduring all of those needles? No doubt you're >relieved that it's over - I always have been after one of those. Alyssa > > > > ... "help". > ______ 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: Tue, 24 Aug 1999 09:31:02 -0700 Subject: TIMING FOR SURGERY Lyn, Thanks for posting about your situation, which is similiar to my own. I had A/P surgery (T6-L4) with three rods (CD/TRSH) almost 1 1/2 years ago at age 50, believing I had a small window of opportunity also. The surgeon commented it was just a matter of time before I would experience pain down my legs. Also being peri-menopausal, I felt "now better than later" would increase the chances for a solid fusion. Prior to surgery, my 58 degree lumbar curve was not causing excessive or chronic pain, and I was pretty active, enjoying skiing, hiking, and occasional whitewater rafting without any physical limitations. Mostly, I experienced muscle spasms and aches brought on by doing too much (yard work, etc.). Your surgeon and mine must have gone to the same school. He also believes the surgery was a great success--the fusion is solid and the cosmetic results are terrific (curve reduced to 10 degrees and I now tuck in shirts and tops). Unfortunately, he is not interested in the impact on my quality of life. I am also unable to work and play as before, and chronic pain rules my life. With each breath and movement, I have pain that reminds surgery has completely changed my life. I have pinching and burning, pulling and tugging, near the upper hooks (which protrude as 5 knobs) any time I move my arms. I also experience pain deep inside when I expand my rib cage and breath. I have swelling in both ankles (particularly the anterior side--left) and numbness in my left hand, plus dull aching around both SI joints. By evening, I am so uncomfortable that I lie on a heating pad for relief wondering why I ever elected to have surgery! Would you let me know what you are doing for pain management and what kind of pain you are experiencing? Cathy [cwlutz@erols.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: CRBwow@aol.com Date: Tue, 24 Aug 1999 19:12:50 EDT Subject: Re: Body Cast Margie, Your instructions for diapering a baby in a cast are invaluable. You will never know how many parents you have helped today! Blessings, Cecile ______ 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: RSMVMD@aol.com Date: Tue, 24 Aug 1999 20:23:18 EDT Subject: Pain Medications Walking After trying a number of NSAIDS without much pain relief, I have been giving a prescription for Vicoprofen (which is similar to the better known Vicodin (acetaminophen with hydrocodone; however, it is ibuprofen with hydrocodone) about six weeks ago, and have begun to get relief. The prescription was for a one month supply (one three times a day) with one refill. I have been very careful about following the prescription exactly as given as it has made me very drowsy (my doctor said that it was ok to take a NoDoze along with the Vicoprofen to counteract its drowsing effect). After two week, I seemed to have a lot less medication than I should have, and thought the pharmacist miscounted the amount (the prescription options of my health insurance pays down to the pill). Well, they did ok the refill, and the pharmacist double counted the medication as he filled it. Again, after just two weeks I had a must lower supply than I should have. I am single, and live by myself. The only people that have keys to my house are a Pet Sitting Company, and a Housecleaning Company. The house is only cleaned once a month; but, the medication has been disappearing much faster. My dog is walked each weekday. I have had the same pet sitter since I've had the midday dog walking (my dog is four years old), and she (the pet sitter) has been very good to my dog, and my dog really likes her! The Pet Sitting Company is a chartered member of the National Association of Pet Sitters, and is licensed, insured, and bonded. I was able to get the Vicoprofen refilled today, and I've also purchased a locking tool box to store my medications there rather than in my medicine cabinet. I am very concerned as to whether I should contact the Pet Sitting Company in regard to this matter, or let this slide. I'm VERY concerned about my "little girl's" safety if I do report it, and was wondering if anyone else on this list has had a similar situation in regard to pain medications / controlled substances that they take, and what they have done about it, or suggestion in general. This situation is really eating at me :-( !!! Thanks for any information that anyone may have!! 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: RSMVMD@aol.com Date: Tue, 24 Aug 1999 20:23:18 EDT Subject: Pain Medications Walking After trying a number of NSAIDS without much pain relief, I have been giving a prescription for Vicoprofen (which is similar to the better known Vicodin (acetaminophen with hydrocodone; however, it is ibuprofen with hydrocodone) about six weeks ago, and have begun to get relief. The prescription was for a one month supply (one three times a day) with one refill. I have been very careful about following the prescription exactly as given as it has made me very drowsy (my doctor said that it was ok to take a NoDoze along with the Vicoprofen to counteract its drowsing effect). After two week, I seemed to have a lot less medication than I should have, and thought the pharmacist miscounted the amount (the prescription options of my health insurance pays down to the pill). Well, they did ok the refill, and the pharmacist double counted the medication as he filled it. Again, after just two weeks I had a must lower supply than I should have. I am single, and live by myself. The only people that have keys to my house are a Pet Sitting Company, and a Housecleaning Company. The house is only cleaned once a month; but, the medication has been disappearing much faster. My dog is walked each weekday. I have had the same pet sitter since I've had the midday dog walking (my dog is four years old), and she (the pet sitter) has been very good to my dog, and my dog really likes her! The Pet Sitting Company is a chartered member of the National Association of Pet Sitters, and is licensed, insured, and bonded. I was able to get the Vicoprofen refilled today, and I've also purchased a locking tool box to store my medications there rather than in my medicine cabinet. I am very concerned as to whether I should contact the Pet Sitting Company in regard to this matter, or let this slide. I'm VERY concerned about my "little girl's" safety if I do report it, and was wondering if anyone else on this list has had a similar situation in regard to pain medications / controlled substances that they take, and what they have done about it, or suggestion in general. This situation is really eating at me :-( !!! Thanks for any information that anyone may have!! 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: Linda Racine Date: Tue, 24 Aug 1999 18:14:36 -0800 Subject: Re: Pain Medications Walking Richard... How odd that you posted this today. I had a business lunch today with a gentleman who was telling me about a previous meeting with someone. That person had almost the exact situation with drugs that you've just had. In her case, it was her nanny. I do think it's important that you call the pet sitting company and get a new person assigned. Be careful not to directly accuse this person, or they'll likely get very defensive. If they do get defensive, or refuse to admit there might be a problem, I'd find a new sitting service immediately. Best of luck. 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: Lori Date: Tue, 24 Aug 1999 19:14:26 -0500 Subject: The brighter side of surgery I thought maybe our list could use a message with a different tone. I've been thinking about the positives of my upcoming surgery. Aside from the reducing the risk of future back pain, we hope...I'm finding many indirect benefits. In fact, I think the preparation may be just as meaningful as the surgery itself. Due to my "deadline," at which point none of this will be possible for a while, over the past few weeks I've gotten motivated to make improvements around the house. While the ext. housepainters are working... I have painted the kitchen, made decorative improvements in the dining room, hung new picutres here and there, am painting and reupholstering 4 chairs, fixing other chairs, cleaning the basement. And there's more. To me, these improvements are as good as a 4 week vacation. I've planned a party (sort of a pre-op party ... altho I did not announce it that way to my invitees). We don't have parties much any more since we moved Mom in, so this will be great. I've invited loads of people. My sister's coming in all the way from Calif (2000 miles) to stay for a month. She's taking family medical leave to help take care of me and our mom who lives with me and has Alzheimer's. She and I have never had this much time together, as she's 14 years older than I, and I haven't lived with her since I was 3. I love her. I've been at the health club regularly. It feels good. I'm getting in better shape than I've been in a while, and my energy is going up. (I can't believe in 15 days I'll be a wreck.) I've made some great online friends on this list! Friends of mine are already offering to help me when I'm laid up. Cindy's bringing me cookies, and Kathleen's coming over to shave my legs. My husband is showing a new tender side of himself, being very supportive of this big decision (which means months without my income) and asking the surgeon to be very careful. I hope when we think about it, we can all find some special good coming out of our decision to have surgery. Right now, it's really helping me. Lori ______ 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: Steve Hughes Date: Tue, 24 Aug 1999 21:52:32 -0500 Subject: [none] Is there anyone out there who is doing the Copes treatment in the New York City vicinity? If so, I'd like it if we could "chat" a little--I live in NYC and am considering the treatment. Thanks a lot! ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "neemi kim" Date: Tue, 24 Aug 1999 18:58:48 PDT Subject: re: Copes, Dr. Deutchman in New York! Hello, I am wondering if anyone on this List is working with Dr. Deutchman in New York? Because I received his name as a referral of the Copes method and I wonder if anyone has anything to say about him. If you like you can post to the list or write to me at my own email address. Thank you! Neemi Kim _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: CRBwow@aol.com Date: Tue, 24 Aug 1999 22:00:43 EDT Subject: Re: Pain Medications Walking Richard, In reading your post, I am concerned in two areas: You say that your Pet Sitters company is licensed, insured and bonded. So their employees are (supposedly) not going to steal. Obviously that isn't the case in your situation. I suspect you are not the only victim of this person, and I know the company would want to know right away if something like this is happening, because the longer something like this goes on, the more potential there is for the company to be sued by more people than just you. You may well have legal recourse against the company or the person in this situation already. I realize you are concerned about your dog's safety (and what responsible pet owner would not be in this situation), but I think there must surely be someone else, in this company, who can take over this person's role in the life of your dog. I think you need to also consider the possibility that the drugs may not be all that is disappearing while you are at work. However, the biggest issue would be: what happens if you run out of medication unexpectedly, and the pharmacy refuses to refill it again, and/or your HMO refuses to pay for it again, because it is too soon?!?! This whole mess could impact upon your credibility as well as your physical condition. I realize it is a huge hassle to have to go through getting established with some other person, and I don't blame you for wanting to avoid that, but I think for your own sake and the sake of your animal, you need to take steps to be sure this person is not allowed in your home again, and you have someone else that will do the job, do it right, and keep their hands off your possessions. I would bet the company would be thrilled to work with you if they thought they can avoid a lawsuit. They really are holding the bag here. They need to get rid of that employee, before she gets them in terrible trouble. Very important though: (and another big hassle) if you change people to exercise your dog, for heaven's sake, get all the locks in your home changed, so this person cannot enter again, without your knowledge. Then see if the company has some additional security precautions they can take as well, considering that one of their employees had that much access to your home. If you have neighbors, close by, especially some who love to spy and meddle, they probably know what your present person looks like, and you could explain what has happened and tell them to keep watch in case she comes over again while you are gone, and to call the police if that happens. Of course, you would want to let them see who did have the right to come into your home. I realize this is all a huge pain in the neck (no pun intended), and I don't envy you what you need to do, but I do think you need to take action quickly. 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". ------------------------------ From: Steve Hughes Date: Tue, 24 Aug 1999 22:10:41 -0500 Subject: [none] Hi Sherri, I hope you don't mind my writing to you directly. You have been very helpful. I am seriously considering the Copes program. I got 2 referrals in NY of Copes people. The first, unfortunately, hardly speaks english! So I couldn't work with him--I have so many questions I'd never get clear answers to. The second was referred to me by the Copes people--and I got a pretty bad feeling about him! He suggested that I better get in the program really soon before my curve worsens--although it's been stable for 10 years--he said it might just quickly get worse! I felt he was just trying to scare me. Also, some of the things he said were (I thought) inaccurate. His office also didn't seem to have much confidentiality or privacy! I want to believe the program could work--and there seems to be a lot of good material there--but some of the scare tactics & inaccuracies put me off. I wish he would have just showed me some "before" and "during" x-rays. On the other hand all the physicians I speak to (including the legendary Dr. Neuwirth) totally dismiss Copes in such a way that I find it hard to take them seriously--after all, how could some elements of the program (such as exercise) NOT make a difference? It's hard to accept that we can't make SOME difference in our bodies if we try; and also hard to believe that if a curve can go one way (worse) it can't also go the other way (better). I hope this isn't too rambling--I'm finding myself in a very confusing situation and wondering if you went through any of the same worries and how you resolved them. If you do have time to answer, or thoughts to share, I thank you! Steve ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Ezrich@aol.com Date: Tue, 24 Aug 1999 22:44:29 EDT Subject: Taylor Update - long Hi everyone and welcome to all the newcomers! It has been a while since I have written in, so I will briefly remind you of our situation: Taylor was born full term on 3/31/98, we had no previous knowledge of her complex situation. Diagnosed with VATER Association she had 1 kidney with reflux, Imperforate Anus, tethered cord, dextrocardia, malrotation of the intestines and congenital scoliosis with a 95degree throracic "C" curve, with multiple hemivertibrea with a contralateral bar. She had four sugeries in her first year, and at 11 months, 3/9/99 she hadsurgery consisting of having three hemivertibreas removed from the apex of her curve, then they "straightened her out" as much as they could, inserted two titanium rods, with 8 hooks (two on each end of the rods). They then used bone graphting from her rib and hip and fused the entire area anterior and posterior. This was the most frightening thing to face and the only way I think I got through it was to pray and turn it over to God. To be honest though I can't believe we faced it, it all seems like a fog to me now and almost unreal. Because Taylor's situation is very rare, and fusion only surgery as well as growing rods were discussed, it seemed that no one quite knew how to approach it. We knew without some correction she had a high likelihood of having respitory problems due to the severity of her curve. I think I talked to more doctors then anyone on this list, including Dr. Betts at Shriners who we really loved, and would have been happy to work with him, however, he didn't do surgery on children under 3-4 and we knew hers had to be early. Initially we were told she would need it by 4 months, since it was so progressive! Luckily it really did'nt progress that much it was 100 on the day of surgery. Since her surgery she has been a brace to support and protect the area while it fused. The brace was like a Boston, under her arms and up to her hips, made of a hard styrofoam with flat metal rods running all through it with a large hole for her stomach. She learned to walk at 15 months while in the brace, she had to wear it all the time and could not lean forward without it. The only time she was out of it she was flat and we spongebathed her. Today we went back for the six month check up and she is all fused! I didn't want to get my hopes up, but he told us no more brace. At first I thought I didn't hear him right!! Her limitations are that she can't jump, twist or tumble, for the next six months. He wants to see her in three months, he measured her curve at 35 degrees. Her right shoulder is noticibly higher then the left and he seemed to feel that she should develop an upper compensatory curve that will go the other way, but who really knows. She does have some other strange vertabrea throughout her spine, so it just needs to be watched as she grows. But nothing is a problem at this time. He told us it was the best we could have hoped for. For everyone facing these unbelievably difficult decisions, don't stop talking to the experts until you feel confident in the doctor. After many doctors, this was our last stop, he was so confident that we only had to speak to him once to know he was the one and his approach held the most promise for Taylor. Sorry this is so long but for a change this is one of the happiest days of my life and I want everyone in the throes of this long process to know there is definately a light at the end of the tunnel. Holding her close to me after so long, and snuggling her all night had me crying and crying!! My best to all and God bless Jennifer Mom to Taylor, 17 months, VATER, Cong, Scoli, un-tethered cord, IA, dextrocardia, one kidney, etc..... ______ 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: "Joseph Boatman" Date: Tue, 24 Aug 1999 22:17:06 -0500 Subject: Re: Allison & her EMG Do you have Sandy's address and phone at the hospital? I was planning to visit her, but had to cancel my appt w/Dr. LaGrone since Humana has not yet made a decision re: going outside the network. I want to call her soon - is she in any shape for phone calls? Thanks. Jennie Boatman - -----Original Message----- From: prfbones@att.net To: scoliosis-medical@ai.mit.edu Date: Tuesday, August 24, 1999 4:19 PM Subject: Re: Allison & her EMG > >Oh, it was a little like being a voodoo doll! My thigh >is a bit sore, but all in all, it wasn't very bad at all. > ... ______ 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: "Craig Salisbury" Date: Tue, 24 Aug 1999 22:39:20 -0600 Subject: Pain meds walking Hi Richard, I would have to agree with a previous posting to your problem. Whoever is taking your pills would probably have no problem taking other items from you. I'm sure the person knows exactly what she is getting when she takes your medication. If you do not put a stop to it, the doctor will just think you're abusing the medication, and probably think of you as a liar. Get rid of her, and keep your meds out of plain sight from anyone. Good luck, Craig ______ 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 #1296 ************************* 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". 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