From: bounce-scoliosis To: scoliosis-digest@ai.mit.edu Subject: scoliosis V1 #862 Reply-To: Errors-To: bounce-scoliosis Precedence: bulk scoliosis Thursday, 18 June 1998 Volume 01 : Number 862 Today's subjects for scoliosis, scoliosis-medical, scoliosis-child and scoliosis-teens: Re: Experiences with the COPES brace ["Carla E. Barnett" ] Re: Fusion failures (sampling bias?) [Linda Racine ] Fusion failures (sampling bias?) [Thomas & Kelley Moore ] Re: Experiences with the COPES brace [Jessie Deyoe ] Re: PROTRUDING HARDWARE [Linda Racine ] Re: Fusion failures (sampling bias?) [Bogima@aol.com] Re: Fusion failures (sampling bias?) [Linda Racine ] Re: Fusion failures (sampling bias?) ["Gail Walsh" ] Hardware removal ["Ann & Billy Bean" ] Re: Hardware removal [Linda Racine ] Re: Hardware removal [Diana Laurent ] Re: Experiences with the COPES brace ["Carla E. Barnett" ] Re: Sam's unsucsessful MRI ["Carmell Burns" ] Spouse reaction to staying on list [CarolPerk@aol.com] Re: Hardware removal [PrfBones@aol.com] Re: Fusion failures (sampling bias?) [PrfBones@aol.com] Re: Fusion failures (sampling bias?) [Linda Racine ] Re: A TIP FROM MY HUSBAND [DianePinewood@webtv.net (diane)] Scoliosis Chat ["Henry" ] Re: Fusion failures (sampling bias?) [Elizabeth Mina ] Re: Bending X-Rays [hmc ] Re: one cold foot after fusion surgery [hmc ] one cold (fat?) foot after fusion surgery ["Cyndi King" ] NERVES [KC18555@aol.com] Spencer's brace ["Margie Stelzer" ] Re: Sam's unsucsessful MRI ["Margie Stelzer" ] Re: Fusion failures (sampling bias?) [Linda Racine ] tummy trouble [hmc ] Things before surgery [hmc ] Things before surgery [hmc ] Re: To Fuse or Not To Fuse? [hmc ] Re: Bending X-Rays [hmc ] Re: Fusion failures (sampling bias?) [hmc ] Re: Bending X-Rays [Linda Racine ] Re:Loved ones' reactions [hmc ] Re: Fusion failures (sampling bias?) [hmc ] Re: Hardware removal ["Randy and Teri Nelson" ] ---------------------------------------------------------------------- From: "Carla E. Barnett" Date: Wed, 17 Jun 1998 09:16:59 -0500 Subject: Re: Experiences with the COPES brace Just have not heard from anyone lately using the Cope's brace. Still seriously considering that an option. She asked her chiro if he wanted her to have surgery. He said "NO!" Then she asked if he thought she should wear a brace. He told her she wouldn't wear it. You son seems committed. I'd like to think she would prove him wrong. I've slipped a disc and am in a lot of pain. Hopefully, she won't want to end up like Mom. Just wanted to hear from someone. Still waiting to get the right x-rays so we can send them to LA. Let us hear how things are going. Carla - ---------- > From: SherriLin@aol.com > To: scoliosis@ai.mit.edu > Subject: Re: Experiences with the COPES brace > ... 37 > degrees, and from 43-degree lumbar to 25 degrees. > > The brace is for ages 6 to 60, and for curves up to about 65 degrees, possibly > more. Two middle-aged women in our town are in the program and doing well, > particularly with pain reduction, better posture, and nutritional and > respiratory improvements. > > ... son's > case. Prior to the brace, his spine was curving one degree per month, > progressing a total of 10 degrees in 10 months before the Copes brace. > Thankfully his curve progression stopped, reversed, and is still improving. > > We like the Copes brace because it is worn 18 hours a day, leaving 6 hours out > of the brace for the required exercises, muscle stimulations, etc. The time > out of the brace is very important for re-training and strengthening the > muscles so they'll be able to help hold the corrections when the brace comes > off. > > The Copes program is a complete system that treats all areas of scoliosis, > which is also very important. Not every brace or treatment program covers > this as thoroughly. The EMG is especially enlightening, showing how the back > muscles are not functioning properly, and how they will be improved through > the brace, specific exercises, and muscle stimulations. > > It can be difficult to stick with it, and therefore not get good results. But > anything in life which is truly important to us, or that we want badly enough, > will require dedication and effort if we want good results. We felt that we > should give it our best effort, and so far it is paying off. > > More information on the Copes brace and program can be found at > ... ______ 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, 16 Jun 1998 22:47:07 -0700 Subject: Re: Fusion failures (sampling bias?) Linda M.... So, should we all wait 15-20 years while someone else tests the hardware? I didn't have that kind of time. And, since there are no other totally upright primates, some humans have to be the guinea pigs. This is not a perfect situation. Each one of us that has scoliosis surgery is taking a risk. If it doesn't work out as we'd hope, should we blame the doctors or the manufacturers? Not me. That's like killing the messenger. 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: tjsss@pacbell.net Date: Tue, 16 Jun 1998 23:00:01 -0700 Subject: Sam's unsucsessful MRI - --------------305726BB64C339EF85FE2CE0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit Dear Group, I am in need of a little support right about now. Samantha went in for her MRI yesterday (Mon. June 15th) (By the way, Sam is 6 yrs old and was diagnosed 1 year ago). Anyway, UCLA would not even consider not sedating her. Their reason being that the procedure could last up to 2 hrs and they do not want to risk the accuracy of the results. We were told that she will receive 60 mg of Phenobarbital (sp?) to start and as needed, they would administer a little more at a time until she reached the max for her weight ,119 mg. Well Sam is a fighter and would not lay still. 45 min they had administered 100 mg without any success and then she began to throw up causing them to abort the procedure. I was left to take home my young child who laid violently sick the rest of the night. She was unable to keep anything down, unable to walk, and unable to see straight. Today, though she was able to eat, was still very tried and just watched tv most of the day. At UCLA she has now been labeled as a risk and they told us she will need to be anesthetized next time (next week). My heart can not handle much more suffer on her part. I need to be reminded again of how important this test is or some suggestion on how to proceed. Jackie - --------------305726BB64C339EF85FE2CE0 Content-Type: text/html; charset=us-ascii Content-Transfer-Encoding: 7bit Dear Group,
I am in need of a little support right about now.  Samantha went in for her MRI yesterday (Mon. June 15th) (By the way, Sam is 6 yrs old and was diagnosed 1 year ago).

Anyway, UCLA would not even consider not sedating her.  Their reason being that the procedure could last up to 2 hrs and they do not want to risk the accuracy of the results.  We were told that she will receive 60 mg of Phenobarbital (sp?) to start and as needed, they would administer a little more at a time until she reached the max for her weight ,119 mg.  Well Sam is a fighter and would not lay still.  45 min they had administered 100 mg without any success and then she began to throw up causing them to abort the procedure. 

I was left to take home my young child who laid violently sick the rest of the night.  She was unable to keep anything down, unable to walk, and unable to see straight.  Today, though she was able to eat, was still very tried and just watched tv most of the day.

At UCLA she has now been labeled as a risk and they told us she will need to be anesthetized next time (next week).  My heart can not handle much more suffer on her part.  I need to be reminded again of how important this test is or some suggestion on how to proceed.

Jackie
  - --------------305726BB64C339EF85FE2CE0-- ______ 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: Richard Lethin Date: Wed, 17 Jun 1998 11:57:19 -0400 Subject: Estimating fusion failure rate by polling scoliosis mailing list; sampling bias Elizabeth, I have no idea what the failure rate of scoliosis fusions is. I think that failure rate should be well-communicated, on a per-doctor/procedure/hospital/age-group/incoming-curve/etc. basis, to allow patients and doctors to make effective decisions. I agree with you that the sampling skew introduced by Internet access may give the illusion of a diminished failure rate when one polls outcomes on the scoliosis mailing list. Or it may not. One can't tell! Estimating the correlations to make that determination is a problem more statistically challenging than simply estimating the rate of interest through direct random sampling. Best Regards, Rich Here's a model underlying this argument. Given a patient S who's had a scoliosis operation. X = probability that S had failure 1-X = probability that S had success Y = probability that S has internet access 1-Y = probability that S does not have internet access Z = probability that S joins the scoliosis mailing list 1-Z = probability that S does not join the scoliosis mailing list W = probability that S describes unsuccessful outcome to the scoliosis list 1-W = probability that S says nothing to the scoliosis mailing list. Problem is to estimate X given measurement through W, that is, trying to estimate the probability of failure by asking people on the mailing list if they had failure and tallying responses. Basic probability theory says that if two random variables are independent, the probability of event A and B = AB, e.g., A*B. The problem is that the sampling events (Y, Z, and W) are non-random and therefore there's no basis under probability theory for using W to estimate X. This is why random sampling is used in sound research, e.g., a coin flip or random number generator has no physical relation to X, so a random sampling of a subset of the scoliosis population serves as the basis for making an estimate of X. My argument about skew toward worst case is based on the assumption that W correlates with X. That is, if a person is having troubles, they're more likely to be seeking information and making noise about it. You're free to criticize that assumption, but I think there's reasonable basis in human nature to make it. Note that I'm not making any claim about the size of the correlation (e.g., the correlation of X and Y is 0.2342), I'm just saying the number is positive. You're making an argument about the sampling bias for failed fusions affecting Internet access. In effect, that the correlation between X and Y is *negative*. Thus, if we estimate X from measurements of W, we're going to underestimate X. This is an interesting claim which might have good basis. For example, if one assumes a mechanism whereby lower-income patients S choose lower quality surgeons, have a higher probability of failure, but also lack Internet access because of education levels and economic barriers. I think that's probably a valid mechanism assumption. Previously, I'd ignored mechanisms underlying Y and Z (e.g., that the correlation between (X,Y)=0 and similarly for (X,Z)=0.). But if they're non-zero, then estimating X from Z means making assumptions about (X,Y)+(Y,Z)+(Z,W)=?, e.g., whether that "sum of correlations" is positive or negative. And making assumptions about that sum involves making claims about the relative magnitudes of the different correlations... in other words, which correlation mechanisms are more important. Estimating correlations from observed data is much more difficult that simply estimating probabilities. So one sound conclusion from this ramble is that given the lack of independent sampling, estimating X from W is simply suspect. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: DLac380102@aol.com Date: Wed, 17 Jun 1998 10:57:20 EDT Subject: Re: Bending X-Rays hmc, How is the weight bearing (standing) bending X-Rays different from the bending X-Rays when you lie down on the X-Ray table? Just curious. Does anybody know? - --Donna DLAC380102@aol.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: Eckman Barbara Date: Wed, 17 Jun 1998 11:00:30 -0400 Subject: one cold foot after fusion surgery Hi, This issue was recently raised in the teens group as well. Alex has one foot that feels colder than the other. The pulse is fine and so is the "refill rate" (? I think that's what they call it--when you pinch the toe and see how long it takes for the blood to return--?). But it freaks me out. In the hospital the surgeons said it was ok as long as the pulse, etc were fine. We have a return visit coming up in a few weeks, but in the meantime--has anyone else had this experience post-op? How long does it last? Is it really ok? (Insert worried mom face here) Barbara ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Cathy Lutz Date: Wed, 17 Jun 1998 11:34:47 -0700 Subject: PROTRUDING HARDWARE As the swelling is going down around my posterior incision (7 1/2 weeks post-op), surgical hardware is beginning to reveal itself! I now have four "knobs" protruding from my back--two on each side of the incision. They are somewhat sensitive to the touch, and I wonder if later on they may cause me some problems. I checked a post-op X-ray and found the knobs match hardware locations--likely screws at and near the top of the two C-D rods (starting at T7). The lumbar area (fused to L4) is fine, though still swollen. Does the natural lordosis of the thorasic spine contribute to this (also, I'm really skinny right now)? Is it somewhat typical for hardware to protrude as the swelling goes down? Will muscle and fused bone eventually cover the protruding hardware? I spoke with someone locally who had surgery last year to remove the top 3" of her hardware. She is now in her early 60's, is active (plays lots of tennis), and found it was painful to do sit-ups (I didn't even ask about that one!). Her second surgery was as an outpatient, and it gave her much relief. 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: Thomas & Kelley Moore Date: Wed, 17 Jun 1998 08:51:10 -0700 Subject: Fusion failures (sampling bias?) Well, Elizabeth, I think you've brought up a really good point! The thing is, we need to define "fusion failure" here. Allison, I think Elizabeth is referring to the "fusion", not the instrumentation. Big difference. You can have the instrumentation removed if your fusion is solid, but you are, in fact, still left with the rigidity of a fused spine. There is the problem! Sure, there are folks that are dealing with psuedoarthrosis (by the way, I've seen that spelled psuedarthrosis and psuedoarthrosis, which is it?), but that's been there since right after the surgery! It doesn't happen years later. So, what are we talking about here? Well, I think the common problem with "old" fusion patients (mine was13 years ago... I guess that makes me one of them) is disc degeneration. Yep, that's gonna happen to anybody as they get older, but if you think about it, people with long fusion are just more susceptible to it because we don't have as many of the little buggers working for us any more. Then there's the Flatback thing. Well, I don't get that, either. Is it simply the instrumentation being put into the lumbar spine, or is it that the rod wasn't bent or shaped to give a natural lordosis prior to surgery? Is Flatback Syndrome considered "failed fusion"? The endoscopic surgery that Elizabeth mentioned is, IMO, without a doubt, the most exciting news in scoliosis technology today. Fusing fewer vertebrae and still correcting the curvature makes total sense. In addition, it's not nearly as invasive a procedure as they are offering at present. Elizabeth quoted Dr. Blackman as saying "...but if we can avoid going into the lumbar spine for the next 20 years I think that would be good providing the curve does not increase too much.". Let's not forget about the possible beneficial compensatory affects of that, also. I have often mentioned a study (The Selection of Fusion Levels in Thoracic Idiopathic Scoliosis) that goes into how the spine can correct itself if the fusion level is carefully selected. I won't go into it now, but I strongly advise reading it. The "survey" that Allison mentioned is just that, a survey, not a study. They aren't the same, are they? I think it's a great idea to get information from scoliosis patients in an attempt to find a common denominator, if you will. It seems to me that that could be very beneficial, and at least, very interesting. I have always wondered why they have never done it before. You've got these "associations" and "societies" that the spine surgeons belong to; doesn't it make sense that they compare notes on their patients? Hmmmm. I never did agree with Richard that the "failed fusion" patients come here. I don't think that there are very many patients with long fusion, that are more or less 20 years post-op, that aren't having degenerative problems. Come on! That would be practically physically impossible, unless they have been totally sedentary since their surgery. And Elizabeth is right, you still would have to factor in those who are not on-line or aware of this mailing list. OK, I'm done. :o) Kelley ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Jessie Deyoe Date: Wed, 17 Jun 1998 09:28:43 -0700 (MST) Subject: Re: Experiences with the COPES brace Hi, Carla: I was just in San Diego last week to get fitted for my brace. I am really excited and am already up to 7 hours per day in the brace. I am doing the exercises and hydrotherapy, but am waiting for delivery of the traction equipment and muscle stim machine. The brace is not always comfortable and I find it VERY hot here in Arizona, but the benefits I expect far outweigh the pain! When I received the brace last Thursday, I wore it a total of 14 hours on and off before I removed it at the clinic Friday morning. I had actually gained 1" in height. I know I did not retain that as my muscles are not retrained yet, but it was certainly indicative of improvement to come. I am 65 and over the course of years and worsening scoliosis have lost over 4" in height. I know your daughter would benefit from the program, but it does take a great deal of dedication - hers, not yours. ;) If she makes up her mind to do it, she CAN do it. Good luck. Jessie On Wed, 17 Jun 1998, Carla E. Barnett wrote: > > Just have not heard from anyone lately using the Cope's brace. Still > seriously considering that an option. She asked her chiro if he wanted her > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Richard Lethin Date: Wed, 17 Jun 1998 11:57:19 -0400 Subject: Estimating fusion failure rate by polling scoliosis mailing list; sampling bias Elizabeth, I have no idea what the failure rate of scoliosis fusions is. I think that failure rate should be well-communicated, on a per-doctor/procedure/hospital/age-group/incoming-curve/etc. basis, to allow patients and doctors to make effective decisions. I agree with you that the sampling skew introduced by Internet access may give the illusion of a diminished failure rate when one polls outcomes on the scoliosis mailing list. Or it may not. One can't tell! Estimating the correlations to make that determination is a problem more statistically challenging than simply estimating the rate of interest through direct random sampling. Best Regards, Rich Here's a model underlying this argument. Given a patient S who's had a scoliosis operation. X = probability that S had failure 1-X = probability that S had success Y = probability that S has internet access 1-Y = probability that S does not have internet access Z = probability that S joins the scoliosis mailing list 1-Z = probability that S does not join the scoliosis mailing list W = probability that S describes unsuccessful outcome to the scoliosis list 1-W = probability that S says nothing to the scoliosis mailing list. Problem is to estimate X given measurement through W, that is, trying to estimate the probability of failure by asking people on the mailing list if they had failure and tallying responses. Basic probability theory says that if two random variables are independent, the probability of event A and B = AB, e.g., A*B. The problem is that the sampling events (Y, Z, and W) are non-random and therefore there's no basis under probability theory for using W to estimate X. This is why random sampling is used in sound research, e.g., a coin flip or random number generator has no physical relation to X, so a random sampling of a subset of the scoliosis population serves as the basis for making an estimate of X. My argument about skew toward worst case is based on the assumption that W correlates with X. That is, if a person is having troubles, they're more likely to be seeking information and making noise about it. You're free to criticize that assumption, but I think there's reasonable basis in human nature to make it. Note that I'm not making any claim about the size of the correlation (e.g., the correlation of X and Y is 0.2342), I'm just saying the number is positive. You're making an argument about the sampling bias for failed fusions affecting Internet access. In effect, that the correlation between X and Y is *negative*. Thus, if we estimate X from measurements of W, we're going to underestimate X. This is an interesting claim which might have good basis. For example, if one assumes a mechanism whereby lower-income patients S choose lower quality surgeons, have a higher probability of failure, but also lack Internet access because of education levels and economic barriers. I think that's probably a valid mechanism assumption. Previously, I'd ignored mechanisms underlying Y and Z (e.g., that the correlation between (X,Y)=0 and similarly for (X,Z)=0.). But if they're non-zero, then estimating X from Z means making assumptions about (X,Y)+(Y,Z)+(Z,W)=?, e.g., whether that "sum of correlations" is positive or negative. And making assumptions about that sum involves making claims about the relative magnitudes of the different correlations... in other words, which correlation mechanisms are more important. Estimating correlations from observed data is much more difficult that simply estimating probabilities. So one sound conclusion from this ramble is that given the lack of independent sampling, estimating X from W is simply suspect. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Linda Racine Date: Wed, 17 Jun 1998 09:01:12 -0700 Subject: Re: one cold foot after fusion surgery Barbara... I often (not always) have one foot (my left) cold. I think I remember that one of the scoliosis docs told me that it was because the Sympathetic nerve was cut during anterior surgery. Linda For help on using this list (especially unsubscribing), send a message to "scoliosis-teens-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Linda Racine Date: Wed, 17 Jun 1998 09:01:12 -0700 Subject: Re: one cold foot after fusion surgery Barbara... I often (not always) have one foot (my left) cold. I think I remember that one of the scoliosis docs told me that it was because the Sympathetic nerve was cut during anterior surgery. 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: Cathy Lutz Date: Wed, 17 Jun 1998 11:54:45 -0700 Subject: A TIP FROM MY HUSBAND My husband came up with a great idea for turning on/off lights when I'm lying down reading or napping in the family room or guest bedroom. He purchased extension cords with on/off switches and attached them to the nearest lamps. Now when I'm reading in bed at night, I don't have to get myself up again (it seems good to limit that movement!) to turn off the light. The switch is within reach while I'm still flat on my back, and I don't have to disturb him or my spine to lighten/darken the room. 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: Linda Racine Date: Wed, 17 Jun 1998 09:03:57 -0700 Subject: Re: PROTRUDING HARDWARE Cathy.... Protruding hardware is a common problem with ultra thin people. If it remains protruding, and bothers you (which it probably will), your doctor will probably suggest that they remove the hardware in a year or two. 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: Bogima@aol.com Date: Wed, 17 Jun 1998 12:08:11 EDT Subject: Re: Fusion failures (sampling bias?) Hi All, I'm with Linda on this one, but you all probably already know that I'm one of those who are grateful for the 20 years of feeling really good because of my Harrington Rod surgery, even though I needed revision surgery last December. Twenty years is a long time. A lot can happen in life in twenty years. And twenty years ago, who knew they would come out with better ways of performing surgery. Someone looking at surgery today could wait for something better than what's out there now to no avail, for all we know. One cannot foretell the future. We can only do the best we can with what's available at the time. And while a lifetime of being pain free is an ultimate goal, whose to really say that twenty years relief constitutes failure? 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: Linda Racine Date: Wed, 17 Jun 1998 09:11:22 -0700 Subject: Re: Fusion failures (sampling bias?) Kelley... You may not agree with Richard that he believes the list has a sampling bias, but in my experience, Richard is correct. There is a major sampling bias on the list. The vast majority of people on the medical list have either had surgery within the last year or two, are getting ready to have surgery, or have a major problem resulting from scoliosis surgery. I have a rather unique perspective in that I've met, talked to or otherwise corresponded with, hundreds of scoliosis patients who have had surgery. The vast majority of these people fall out of contact with me after a year or two. When I occasionally talk with these people after that, they report that they don't have any major problems. Ask anyone who has run a scoliosis support group for any length of time. I believe they'll tell you that the population changes over time, with only a handful of the "successful" surgeries sticking around. 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: RBerk1382@aol.com Date: Wed, 17 Jun 1998 12:36:01 EDT Subject: EXPERIMENTAL TRIALS Allison, and others: It is always extremely difficult to do a prospective study of the effect of a particular treatment for human beings. The lack of a control group is an obvious ethical problem. The "Tuskegee" study of African American men with syphilis is a prime example. Would you deny anyone a potentially successful treatment/cure in order to get good statistics? Not with human beings. And you are not likely to get human beings to offer to participate in trials that have not been preceded by ones on primates or other mammals. So much for "no animal testing." Medical knowledge is increased somewhat by trial and error, but there is more to it than that. Knowledge of how the body functions has been increasing separate and apart from all of our surgeries. I know that to some extent I am a guinea pig. Dr. Boachie is relatively loose about what I can do and cannot do safely a year and a half after my CD A/P surgery from T4 to Sacrum. He encourages me to try different things. I certainly hope that now 51 I will not need another surgery at 71. But, so far so good, the pain of the body's readjustment is lessening everyday. We need to be realistic and not quite so bitter. We're significantly luckier than our parents and grandparents were. Roberta ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: RBerk1382@aol.com Date: Wed, 17 Jun 1998 12:36:01 EDT Subject: EXPERIMENTAL TRIALS Allison, and others: It is always extremely difficult to do a prospective study of the effect of a particular treatment for human beings. The lack of a control group is an obvious ethical problem. The "Tuskegee" study of African American men with syphilis is a prime example. Would you deny anyone a potentially successful treatment/cure in order to get good statistics? Not with human beings. And you are not likely to get human beings to offer to participate in trials that have not been preceded by ones on primates or other mammals. So much for "no animal testing." Medical knowledge is increased somewhat by trial and error, but there is more to it than that. Knowledge of how the body functions has been increasing separate and apart from all of our surgeries. I know that to some extent I am a guinea pig. Dr. Boachie is relatively loose about what I can do and cannot do safely a year and a half after my CD A/P surgery from T4 to Sacrum. He encourages me to try different things. I certainly hope that now 51 I will not need another surgery at 71. But, so far so good, the pain of the body's readjustment is lessening everyday. We need to be realistic and not quite so bitter. We're significantly luckier than our parents and grandparents were. 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: "Ann & Billy Bean" Date: Wed, 17 Jun 1998 11:54:18 -0500 Subject: Hardware removal I have been under the impression that hardware removal was fairly non-invasive as opposed to rod placement But recently I was told that removal can be as major as implantation because of having to chip through bone to release connections. I have always wondered how it could be so much simpler because of that fact. It would be easy if an incision at the top or bottom of the fusion scar could be made and the rod "pulled" out, but I don't understand how that is possible considering screws and wires, etc. which help anchor the rod/s. Anyone who has gone through rod-removal that can share the experience with us? Thanks, Ann ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Gail Walsh" Date: Wed, 17 Jun 1998 13:46:55 -0500 Subject: Re: Fusion failures (sampling bias?) Hi, Thought I would add my voice to this discussion. I hesitate to call it a debate. I believe it would be great if some reputable company or medical facility conducted research to ascertain the rate of fusion failures. A study that would follow scoliosis patients for an appropriate period of time. I had my Harrington rod surgery 12 years ago and I have been fortunate in that my rods have not caused me any noticeable problems. Any problems I have had (pain, pulmonary problems) are related to the kind of scoliosis I had and likely to the fact that I did not have the surgery until I was 17. I really believe that had I not had the surgery, I would not likely be alive and if I was, the quality of life would be significantly lower. I frankly find this discussion somewhat scary and wonder if I should expect problems. On another note, my mother was visited me recently and noticed I belonged to this mailing list. Well, she went almost ballistic, suggesting I was hanging on to the past and that I should get over this "scoliosis thing". I know she meant well but I found that really frustrating. I know how difficult it must be to have a child with a disability but my mother, an educator, reacted emotionally by wanting to hide it all the time. (In terms of buying clothes that would hide the curvature before the surgery and so on). I see this list as a scientific way to deal with these issues. Has anyone else experienced this kind of reaction among your loved ones? Thanks! Have a good day! Regards, Gail ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Ann & Billy Bean" Date: Wed, 17 Jun 1998 11:54:18 -0500 Subject: Hardware removal I have been under the impression that hardware removal was fairly non-invasive as opposed to rod placement But recently I was told that removal can be as major as implantation because of having to chip through bone to release connections. I have always wondered how it could be so much simpler because of that fact. It would be easy if an incision at the top or bottom of the fusion scar could be made and the rod "pulled" out, but I don't understand how that is possible considering screws and wires, etc. which help anchor the rod/s. Anyone who has gone through rod-removal that can share the experience with us? Thanks, Ann ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Linda Racine Date: Wed, 17 Jun 1998 10:25:07 -0700 Subject: Re: Hardware removal Ann... The hooks or screws and connectors that keep the rods in place have to be removed first in order for the rods to then be removed. Occasionally, bone from the bone graft grows around the hooks, screws and connectors. Some hardware removal is very simple. Other times, it's so difficult that the surgeon only removes a portion of the hardware. 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: Diana Laurent Date: Wed, 17 Jun 1998 11:02:10 -0700 Subject: Re: Hardware removal At 11:54 AM 6/17/98 -0500, you wrote: > >I have been under the impression that hardware removal was fairly >non-invasive as opposed to rod placement But recently I was told that > ... My experience is many years old, but the rod removal was more difficult than either the surgeon or I had thought it would be. Bone REALLY attaches to metal, so I had a small crack as a result of the removal, the the soft tissue "embraced" the metal, as well. I didn't have much pain from the crack, but the muscles and ligaments were pretty well torn up and painful for quite a while. The surgeon had to cut one of the rods in half to get it out (I still have it). I'm not sorry they were removed, though. No way was it as difficult as the original surgery. Don't forget that inserting the rods also means straightening the spine to place them, which involves a lot of skill and brute force. Diana ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Carla E. Barnett" Date: Wed, 17 Jun 1998 13:01:02 -0500 Subject: Re: Experiences with the COPES brace Jessie, Thanks for writing. I'm really getting anxious to have my daughters x-rays reviewed by the Copes Clininc in Baton Rouge LA. She has a 52º thoracolumbar curve. She had an MRI and it was normal. She is in very good health, so I really want to believe that she is a good candidate. We lived in Arizona for a while. You must be scorching. It is no better here in KY. The humidity is awful. I know it will be my daughter's responsibility. It's going to be hard, and we will need all the support we can get. I am 45 and have scoliosis also. Never had it measured, but my chiro says its probably about 40º both ways. My back has really worsened this last year. I may consider Copes myself. I hope seeing how bad I feel (I just slipped a disc) will encourage my daughter to devote the time that is needed now to give her the life she so wants and deserves. Thanks again for writing. Keep us posted. Carla and Anna - ---------- > From: Jessie Deyoe > To: scoliosis@ai.mit.edu > Subject: Re: Experiences with the COPES brace > ... her > > to have surgery. He said "NO!" Then she asked if he thought she should > > wear a brace. He told her she wouldn't wear it. You son seems committed. > > I'd like to think she would prove him wrong. I've slipped a disc and am in > > a lot of pain. Hopefully, she won't want to end up like Mom. Just wanted > > to hear from someone. Still waiting to get the right x-rays so we can send > > them to LA. Let us hear how things are going. Carla > > > > ---------- > ... gotten > > > approximately 15-degree corrections so far -- from 50-degree thoracic to > > 37 > > > degrees, and from 43-degree lumbar to 25 degrees. > > > > ... my > > son's > > > case. Prior to the brace, his spine was curving one degree per month, > > > progressing a total of 10 degrees in 10 months before the Copes brace. > > > Thankfully his curve progression stopped, reversed, and is still > > improving. > > > > ... The > > time > > > out of the brace is very important for re-training and strengthening the > > > muscles so they'll be able to help hold the corrections when the brace > > comes > > > off. > > > > ... the > > back > > > muscles are not functioning properly, and how they will be improved > > through > ... results. > > But > > > anything in life which is truly important to us, or that we want badly > > enough, > > > will require dedication and effort if we want good results. We felt that > > we > > > should give it our best effort, and so far it is paying off. > > > > ... every > > > detail of the program, and their staff can answer any of your questions. > > > > > > sherrilin@aol.com > > > > ... message > > > to "scoliosis-request@ai.mit.edu" with one line of text: "help". > > > > ______ > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Carmell Burns" Date: Wed, 17 Jun 1998 10:49:32 PDT Subject: Re: Sam's unsucsessful MRI Jackie, Know, first, that we are ALL with you and support you emotionally. It is a terribly frustrating, if not horrifying experience to go through. We had to come up with a different 'game plan' at the time of Braydon's MRI (nothing as drastic as Sam's) and it made the emotional preparation I had done obsolete. To top it off, after the spinal MRI he went for a VCUG xray (inserting dye into the bladder via catheter and then taking a series of xrays at different intervals to rule out bladder/kidney reflux, which he did have). I was holding him (he was 10 months old at the time) and he still had the IV (in his head) from the MRI sedation in case something went wrong during the VCUG. So I tried to hold him while dragging an IV pole and fighting with a screaming baby. Not a lot of fun but yet the comfort that came from knowing that the MRI revealed a healthy spinal cord with no tethering or other SM-type issues, was enough to overcome the tears we all shed that day. An MRI can be critically important to a persons overall health. Talk to an anesthesiologist and see if they can't come up with some different means of sedation for the test. Sedation can be a scary thing but if the results give you positive answers (meaning that there is nothing to worry about) then it is well worth it. Braydon has had 6 surgeries and has been sedated via IV another 5 times. Knowing that he was sedated and not traumatized by the treatment/procedure was also somewhat of a comforting thought. Each child is different and it is next to impossible to predict how they will handle a particular test/procedure. But find a good staff member at the hospital that will listen to your concerns and will help you find other solutions to a potential problem. Sorry for being so long, but I feel strongly about the MRI issue and send only my best intentions and wishes to all. Let us know how you and Sam manage with the test next week. Carmell ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.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: CarolPerk@aol.com Date: Wed, 17 Jun 1998 14:01:24 EDT Subject: Spouse reaction to staying on list My husband periodically asks me if I'm going to leave this list. He is not overly emotional about it, but I think he doesn't want me to overreact to the problems that other people might experience. I just like keeping up on what's going on and being able to be supportive to those who have or will have a similar experience to mine. 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: PrfBones@aol.com Date: Wed, 17 Jun 1998 14:02:28 EDT Subject: Re: Hardware removal I have had hardware removal and it was unbelievably painful! I couldn't return to work for two months after the Harrington removal. My other Harrington rod has Leuke wires and removal of that instrumentation is more dangerous taking out than putting in because of the proximation to the cord and the surgeon is not able to control wire movement as well during removal. I don't consider it an option to weild so flippantly. Allison ______ 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: PrfBones@aol.com Date: Wed, 17 Jun 1998 14:30:01 EDT Subject: Re: Fusion failures (sampling bias?) In a message dated 98-06-17 12:02:12 EDT, you write: << Allison, I think Elizabeth is referring to the "fusion", not the instrumentation. Big difference. You can have the instrumentation removed if your fusion is solid, but you are, in fact, still left with the rigidity of a fused spine. There is the problem! Sure, there are folks that are dealing with psuedoarthrosis (by the way, I've seen that spelled psuedarthrosis and psuedoarthrosis, which is it?), but that's been there since right after the surgery! It doesn't happen years later. >> I developed a pseudoarthrosis 12 years following surgery. A pseudoarthrosis is a joint where no joint should be and they can develop at anytime. It can and often does happen years later. We've been through this before. You speak of instrumentation removal as if it's day surgery or something. Removal of instrumentation is not a trivial matter at all, speaking from experience. It is a long stay in the hospital and you're on the same pain meds and have the same recovery time as with a fusion for the most part. It is because of the instrumentation that so many salvage surgeries are being performed. Some fusions are done without instrumentation at all (usually not in scoliosis cases but there are other circumstances that warrent this technique). My brother, 42, has a curve that is well over 80 degrees that was never treated with a brace or with surgery. He is leading a productive life with five young children and I can say that currently I am considerably in much more pain than he is today. Makes you think about those lack of controls eh??? Granted, we don't have a fully upright primate. But there are primates that do weight bare on the spine in a similar fashion as humans and would make a better control than a dog or a chicken (two animal models that are sometimes used because they are MUCH less expensive). If animal models had been in use 20 years ago, we would be in alot better shape than we are today or will be in another 20 years without those studies being carried in large numbers today!!! Humans as guinea pigs. Hmmm. I would condone that if there wasn't any way possible to carry out the needed research. But there is, and always have been and it has simply not been done. So, no, I don't accept that in 1998. Surgeons just didn't put in the Jarvic 7000 artificial heart as a bridge to transplant into a human to see if it worked or not, there were years and years and years of testing that went into that system, at least 9 prototypes on 5 animals in many laboratories all over the country collaborating to get this thing up. People were dying in the meantime, but no cardiac surgeon felt they could ethically put this thing into a human, despite the desparation of the situation, without scientifically evaluating the data and outcomes. No human guinea pigs in that situation and I dare say that those people are in far worse condition than most of us. Valve replacement, same thing. Cardiac surgery was frought with cowboys in the early days that would do daring novel manouvers on humans and try to get a technique named after themselves, but today, they have built beautiful models and arenas in which to test new devices and methods on models that are not human. Allison ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Linda Racine Date: Wed, 17 Jun 1998 12:00:53 -0700 Subject: Re: Fusion failures (sampling bias?) Allison... In some cases, rod removal is a 2-3 day hospitalization. I've met several people who've had their hardware removed, and none had really severe problems. All reported that the pain was minimal. As always, it obviously can vary from person to person. I met a doctor (from Texas... can't remember his name) at an SRS meeting several years ago, who routinely schedules his scoliosis patients for hardware removal two years after the initial surgery. Using other primates for testing is a great idea. In my case, however, I'm very grateful that I didn't have to wait an additional 10-15 years, or possibly more, to have my surgery. How would success be judged in these animal models? If the animals gait doesn't change? If the spine remains in the correct position? I think you know much more than I do about these things, but I'd personally still have concerns, even after extensive animal testing. Wouldn't the fact that other primates walk bent at the waist, possibly give entirely different results than what could be expected in humans? It seems to me that many of the significant problems in humans center around the disc about the sacrum. Non-human primates would not be putting nearly as much stress on that joint. Also, since the animals would not have scoliosis prior to implantation, would they have the same stresses on the spine? 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: pamela clouser Date: Wed, 17 Jun 1998 15:17:43 -0400 Subject: Re: Hardware removal Ann & Billy Bean wrote: > > I have been under the impression that hardware removal was fairly > non-invasive as opposed to rod placement But recently I was told that > ... Hi My name is Pam Clouser I am New. I am 32 years old with 2 kids. I had my first surgery when I was 16 years old. I had a rod put in to stop the 65 degree curve. I have had 2 hardware removals. My first removal was the rod. The rod came apart at the bottom and about 4 of the wires around the rod and spine broke. This surgery took 11 and half hours. Then I had 8 screws put in to hold the new fusion. This was in 1995. After a 2 years I still had alot of pain. So my Doctor than took out these screws and but in 10 new ones and fused me to my tale bone. The he went thur my stomach and put in 3 round metal castings. This was done in 2 surgeries in Oct 97 & Nov 97. Let me say this that having scoliosis has been nothing but pain. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: DianePinewood@webtv.net (diane) Date: Wed, 17 Jun 1998 16:01:44 -0400 Subject: Re: A TIP FROM MY HUSBAND Just another thought on the subject: What about those clappers that were usually out around the holidays? You plug a lamp into this device and then turn it on or off by clapping your hands. Or maybe they have new remote control devices for all I know. On a related aside. The equipment catalogs that are out there have so many devices and things to help with mobility, reaching, etc... If you need assistance, in general, or post surgery, be sure to look through one. There are lots of products available that you wouldn't even have thought of to make life easier or more pain free. Diane ______ 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: "Henry" Date: Wed, 17 Jun 1998 20:31:31 -0400 Subject: Scoliosis Chat This is a multi-part message in MIME format. - ------=_NextPart_000_000E_01BD9A2E.E9E03500 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit It's been a while since I've made this post, so I thought it's about time. I have an ICQ chat room called "Scoliosis Support". I have regular chats (make that I 'TRY' to have regular chats - sometimes "doo-doo occurs" and I just can't make it) on Saturday nights at 9pm US east coast time zone. Anyone with icq can automatically add themselves to the chat list. The uin is 4087834. Anyone who doesn't have icq, but wants to know more about it, can goto: http://www.icq.com The program can be downloaded there for free. there is no fee for using icq (at least not yet - but AOL just recently bought it out, so who knows). If you are having any problems downloading the Windows95 version, email me, and I'll direct you to my home page where you can download it a lot easier and quicker. I can help with most Windows95 questions/problems, but I am useless with Macs and AOL. If anyone on the list wishes to invite someone to the chat, who isn't on the mailing list, that is perfectly ok. There is no restriction to who can come to the chats, but notify the person that the intent of the chat room is for Scoliosis Support. It doesn't mean that we dont chat about other topics, but generally that is the common theme. The next scheduled chat (yes I plan on being there) is Saturday 6/20/98, at 9pm US eastern time. Any questions, give me a yell, cyall later, Henry bgrmystr@eagnet.com Scoliosis Support icq 4087834 - ------=_NextPart_000_000E_01BD9A2E.E9E03500 Content-Type: text/x-vcard; name="Henry Berger.vcf" Content-Transfer-Encoding: quoted-printable Content-Disposition: attachment; filename="Henry Berger.vcf" BEGIN:VCARD VERSION:2.1 N:Berger;Henry FN:Henry Berger NICKNAME:2fuzzy ORG:Just-Reboot TITLE:Owner NOTE;ENCODING=3DQUOTED-PRINTABLE:ICQ - 383711 (2fuzzy)=3D0D=3D0A = - 4087834 (Scoliosis Support Chat =3D Room)=3D0D=3D0A - 12093088 (Just-Reboot) =3D0D=3D0A=3D0D=3D0AIf = you don't have IC=3D Q, check out:=3D0D=3D0Ahttp://www.icq.com=3D0D=3D0A TEL;WORK;FAX:912-882-2715 ADR;WORK;ENCODING=3DQUOTED-PRINTABLE:;;555 charlie Smith Sr. = Hwy=3D0D=3D0ASuite 8 #326;St. Marys;Ga.;31558;US LABEL;WORK;ENCODING=3DQUOTED-PRINTABLE:555 charlie Smith Sr. = Hwy=3D0D=3D0ASuite 8 #326=3D0D=3D0ASt. Marys, Ga. 31558=3D0D=3D =3D0AUS ADR;HOME:;;;St. Marys;Ga. LABEL;HOME:St. Marys, Ga. URL:http://www.eagnet.com/edipage/user/bgrmystr URL:http://www.just-reboot.com EMAIL;PREF;INTERNET:bgrmystr@eagnet.com EMAIL;INTERNET:2fuzzy@mindless.com REV:19980618T003131Z END:VCARD - ------=_NextPart_000_000E_01BD9A2E.E9E03500-- ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Elizabeth Mina Date: Wed, 17 Jun 1998 17:23:39 -0400 Subject: Re: Fusion failures (sampling bias?) Dear Linda, The problem is that many SRS doctors are not being upfront with their patients and telling them that after they fuse them at age 14, they will probably be back in the operating room at 34 to try to salvage what was done 20 years earlier. And when I say salvage, I mean salvage: it's extremely diffifult to deal with a fused spine once it gets into a failed situation--no matter what hardware or techniques were used. All bets are off, & each salvage is and will be an experimental situation. Doctors do not even want to see you when you're in this condition. You wouldn't believe the horrible things they say to you, giving you no hope. This is why I think the approach for scoliosis treatment in adolescence should change to: don't fuse anything unless the curve is so great that it is absolutely needed cosmetically for that teen to be able to function in life. Wait to see whether the curve progresses into adulthood and if it THEN starts causing severe pain and/or disability with walking, breathing, etc., operate at that point. Avoid the lumbar spine COMPLETELY, as verified studies show that the levels of chronic pain caused by lumbar fusions are huge, creating more problems than are solved. People can physically live with pretty big unfused curves, and as I hear it, less pain than if surgeons had operated on them earlier with fusions. I know if I were never fused in the first place, I wouldn't be in the situation I'm in now at 48, racked with pain from my neck to my arms, into my hips, knees, etc., unable to walk much or even sometimes use my hands to hold up a book to read. All of my pain and disability are FUSION-related, not scoliosis/curve related. So if I can save any youngsters from turning into mechanical fused spine screwups 20 years down the road, I'm going to try to do it. I want surgeons to be truthful with their patients & give the real advantages and disadvantages to operating on scoliosis curves. People should know the initial fusion IS expected to be just one step in a line of more fusions, and there's no other choice later in life once that first fusion is complete. Surgeons are just entirely too quick to fuse young teens' spines without giving "full disclosure." Elizabeth Linda Racine wrote: > So, should we all wait 15-20 years while someone else tests the > hardware? I didn't have that kind of time. And, since there are no > other totally upright primates, some humans have to be the guinea pigs. > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: hmc Date: Wed, 17 Jun 1998 17:03:39 -0600 Subject: Re: Bending X-Rays DLac380102@aol.com wrote: > > hmc, > > ... Donna-- Do you mean in taking the X-ray or results? I'm going to assume results, and this is all I know (though I believe someone else has mentioned it on-list before): in my standing (weight-bearing) X-rays, the lower part of my spine seemed incredibly stiff for my age, etc. Though this may actually be the case when I have my lying-down ones, standing up certainly could account for the inflexibilty, according to Dr. Horton. I don't know if it also changes the curve measurement slightly or not. - --hmc. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: hmc Date: Wed, 17 Jun 1998 17:07:46 -0600 Subject: Re: one cold foot after fusion surgery Barbara-- OK, I'm not exactly sure about this, but it is something that I had never heard of before that Dr. Kostuik mentioned to me when I visited him. He said that sometimes with the anterior procedure (or A/P), the sympathetic nerve is damaged or severed, causing each side of the body, from hips down , to feel as though they are different temperatures. Has anyone else heard of this? - --hmc. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Cyndi King" Date: Wed, 17 Jun 1998 18:55:58 -0400 Subject: one cold (fat?) foot after fusion surgery Barbara - I had one fat leg and foot during pregnancy and one very normal. I weighed 125 prior and 157 at full term - so I did not gain a lot of weight. I wonder if this is somehow related? Normal sized legs now, equally matched set, I mean. Diagnosed with scoliosis at 9, corrected with Milwaukee brace during teens, pregnancy at 33, now 41. Experienced tremendous awareness of curve & curve regression after pregnancy. Surgery scheduled for June 30! I can't believe it is less than 2 weeks away! I will keep you posted on my foot and leg experience, I wondered prior to this posting if my situation from pregnancy may reappear? No correlation, but may be my way of responding to pressure. :-) As an aside, my 8 year old daughter was going to my sister's on 6/29. I just found out today she had a hysterectomy on Monday!!!!! Did not have a chance to talk to her at length about doctor's restrictions for herself - it was done the old-fashioned way! (Not vaginally). She will call later when each of us has no kids around. What am I gonna do?! Here, by the Grace of God, go I. Regards - CBK ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Cyndi King" Date: Wed, 17 Jun 1998 19:24:42 -0400 Subject: To Fuse or Not To Fuse? My surgeon recently performed the fusion surgery on an 11 year old girl from a farm outside of Shanghai, China. Heal the Children put them together here in the USA so she could live past her teen years. In China, as you know, a family is permitted one child. This girl was described by Dr. Brown as her parents Faberge egg. He feels now she will grow up to have children of her own. I know in my case I need this surgery to get through the next 20 years. Over the last 20 the technology has improved so dramatically. As an option then I would have spent 1 year out of school and activities in a full body cast. This gave me the incentive to wear the brace. Now one is up walking in a clamshell style brace after 2 or 3 days!! If I need revision surgery in 20 years may it outpatient surgery because people like Allision and Megan studying medicine will improve on the current technology. My mom, with 65 degree thoracic curve, has told me not to let this list and my research pervade my life! It's okay for the pain to do so, but not my understanding of my condition. I take ownership and responsibility for my scoliosis! If I can learn from others and offer solace when necessary, you all have been a link to life! Thank you for being here. It is my intention to remain here. I don't think for one minute that I will be "cured" or "healed" once the rods are inserted and the fusion is in place. I will always have scoliosis. I go on and on, sorry. Regards - CBK - ---------- > From: Gail Walsh > To: scoliosis-medical@ai.mit.edu > Subject: Re: Fusion failures (sampling bias?) > ... expect > problems. > > On another note, my mother was visited me recently and noticed I belonged > ... I > know she meant well but I found that really frustrating. I know how > difficult it must be to have a child with a disability but my mother, an > educator, reacted emotionally by wanting to hide it all the time. (In terms > of buying clothes that would hide the curvature before the surgery and so > on). I see this list as a scientific way to deal with these issues. > > ... ______ 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: KC18555@aol.com Date: Wed, 17 Jun 1998 19:42:00 EDT Subject: NERVES hi. I am getting surgery in two weeks from today. Two nights ago was the first night I was REALLY nervous about it. Everyday I think about it. I would like to know what people did to keep their minds off it. 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: "Margie Stelzer" Date: Wed, 17 Jun 1998 19:05:23 -0500 Subject: Spencer's brace Carmell: Thanks for the info. on the brace. He no longer has the pink marks and really doesn't show signs of rubbing anywhere. His appetite has decreased but I can't tell if it's because of the brace or because he's two. We're trying to give him small snacks through the day and not depend on 3 big meals for his nutrition. Everyone: Now we are fighting heat rash under the brace. We have him in a onsie that we change a couple times a day and give him a cool bath in the evening (and sometimes after playing outside) to cool him off. We are in hot and humid Mid-west but our air conditioning works great and we assist it with fans. But, Spencer is a sweat master and has sensitive skin to boot. Any suggestions? Thanks, 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: "Margie Stelzer" Date: Wed, 17 Jun 1998 18:55:51 -0500 Subject: Re: Sam's unsucsessful MRI Jackie: What a terrible experience! My heart goes out to you and Sam. There is nothing worse than seeing your child suffer especially when it is a result of a decision you made that you hoped was in her best interest. Do you think you and Sam can get ready to do it again next week? I sometimes find that waiting and anticipating are worse than actually just going ahead through the rough part and so I grit my teeth and do it as soon as I can. >From all that I have read and from my and other parents experience, I highly recommend getting the MRI done. (Spencer's MRI showed a syringomylia that is causing no problems now but can in the future.) If the scoliosis is a result of an intraspinal anomaly, no amount of bracing will correct the curve and delayed treatment could lead to neurological problems. It is possible that Sam may have a totally different experience with general anesthesia. Spencer's MRI was done under general anesthesia and was uneventful. They first gave him Versed in some juice to help him relax before going down. He's a pretty low-key kid and that was enough to keep him relaxed through three attempts to start an IV. (For his surgery and cast changes, they did not start the IV's until after they gave him gas to sleep so you may have that option.) They then put him under anesthesia with us at his side. We waited in the waiting room just down the hall during the procedure and as soon as it was over we were called. We walked up to the recovery room with him and, since recovery was not crowded, we were by his side as he woke up. We spent another hour or so in another recovery area as he sipped juice and watched TV. Since he kept the juice down just fine, we drove home. When we got home, Spencer vomitted once, probably from the car ride, but ate fine only an hour later. He was a little tired the rest of the evening but by the next day, he was fine. Getting routine vacinations were more tramatic than the MRI. Not to make light of Sam going under general anesthesia because it is a big deal and more of a risk than just taking a sedative. She also has the disadvantage of a memory of her previous experience. However, although I'm not sure how phenobarbital chemically relates to general anesthesia, she may have less of a reaction if only because she won't have such prolonged anxiety. I wish I could give you a big hug or bring you a casserole or something. Please keep us posted. 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: R.N.A.@worldnet.att.net Date: Wed, 17 Jun 1998 21:17:19 +0100 Subject: I'm home!! Just to let you know that I arrived home today. I feel a whole lot better than I thought I would. It's been a long day, and a bit tired right now. Will post within the next couple of days. (With or without details?? Haven't read any posts yet and I know that was a concern right before I had my surgery) 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: JDuffing@aol.com Date: Wed, 17 Jun 1998 22:52:09 EDT Subject: Re: Hardware removal Dear Ann, I had the Harrington Rods removed from my back 6 years after my original surgery. They had come unattached at the top, thus necessitating the removal. The surgery was much simpler than the corrective surgery. They used the same incision, but they did open my entire back. The recovery rate was a few weeks. Sincerely yours, Joanne ______ 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: Wed, 17 Jun 1998 19:47:27 -0700 Subject: Re: I'm home!! Lynne... Glad you're back with the living. Post all the details you want. 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: Linda Racine Date: Wed, 17 Jun 1998 19:53:46 -0700 Subject: Re: Fusion failures (sampling bias?) Elizabeth... Doctors didn't know when you were 14 that there would be problems 20 years later. Nor can they say to anyone today that there will be problems 20 years from now. I don't know about your doctors, but each of the doctors I saw told me there were no guarantees. I was also told that they didn't have any long term outcome studies. Like Cyndi, I take ownership of my scoliosis. I've been lucky so far, in that I don't have any severe problems. If I do have a problem in the long term, I won't be blaming anyone. Obviously, you feel that your parents and your doctors made the wrong decision. But, that's in your individual case. Left untreated, many curves will progress to over 100 degrees, which leaves the patient looking very deformed and with curve(s) that are often not correctable. If my parents let me get that bad when they had an option to stop the curves at 40 or 50 degrees, I'd be an unhappy camper. 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: Linda Racine Date: Wed, 17 Jun 1998 19:55:59 -0700 Subject: Re: Bending X-Rays Donna and hmc... I believe I've heard that it really doesn't make any difference if bending xrays are taken standing or laying down, as long as it's known which is the case. 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: hmc Date: Wed, 17 Jun 1998 22:00:13 -0600 Subject: tummy trouble Hello! I was wondering if anyone has much of a problem with their tummies. As of the past few months, I can only eat very small, light meals, and even then, I often feel I have consumed the big Turkey-Day dinner. Or sometimes I get naseous.. I won't go into that... My G.P. says everything is basically fine. I'm wondering if it's because my lumbar curve has got my innards all squished up. Any thoguhts? - --hmc. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: hmc Date: Wed, 17 Jun 1998 22:14:02 -0600 Subject: Things before surgery Hello again! I went to my G.P. (actually my first visit with her) for a base-line check-up, to get all my "normal" (ha!) stats and blood work-up before I subjected my body to any more pre-surgery stress. Besides getting my resting heart rate, my blood pressure, and standard blood work-up (plus a check for the bacteria that can cause ulcers), there was nothing else done, though she asked me if there was anything else I wanted to check. Well, of course, _now_ I'm thinking--after I leave the office (isn't that always te way it is?!). So, the only things I've come up with are a nutritional analysis and if there is any way to check lung function (I'm now worrying _tremendously_ about that occasional social smoking I did for a while...) -- and I don't even know if those are things that a G.P. can/will check! Can you guys think of anything else, by experience or common sense? I want to catch as many problems as possible *before* they occur. Thank you! - --hmc. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: hmc Date: Wed, 17 Jun 1998 22:14:02 -0600 Subject: Things before surgery Hello again! I went to my G.P. (actually my first visit with her) for a base-line check-up, to get all my "normal" (ha!) stats and blood work-up before I subjected my body to any more pre-surgery stress. Besides getting my resting heart rate, my blood pressure, and standard blood work-up (plus a check for the bacteria that can cause ulcers), there was nothing else done, though she asked me if there was anything else I wanted to check. Well, of course, _now_ I'm thinking--after I leave the office (isn't that always te way it is?!). So, the only things I've come up with are a nutritional analysis and if there is any way to check lung function (I'm now worrying _tremendously_ about that occasional social smoking I did for a while...) -- and I don't even know if those are things that a G.P. can/will check! Can you guys think of anything else, by experience or common sense? I want to catch as many problems as possible *before* they occur. Thank you! - --hmc. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: hmc Date: Wed, 17 Jun 1998 22:26:26 -0600 Subject: Re: To Fuse or Not To Fuse? Cyndi-- I got your message and for a moment I thought _I_ had written it! ;-) That is _exactly_ what I have been getting since I dropped out of college this semester to get a handle on this thing. My parents won't tell me I _can't_ have surgery, but they do not support my decision, either. And being 22, they are still quite an influence on my life. Everyone perpetually accuses me (that's what it feels like, at least) of doing this for _cosmetic_ reasons, or tells me (over and over and over) that this is not a cure and that I am just setting myself up for surgery after surgery for the rest of my life.... I know I do not have to tirade about this to you guys, because anyone who has had these things said to them knows how it feels. Anyway, *thank you* , everyone, for helping to have such a helpful, supportive list that gives me a little realistic hope when some days all it seems like I've got is _bozos_ (but bozos that I love, alas!) who haven't been doing the research, yet insist on "telling me a thing or two" and squishing down my hope. And, oh yeah -- the information is pretty good, too. %-) - --hmc. P.S. Well said, Cyndi -- your message is in my "Hope full" folder. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: hmc Date: Wed, 17 Jun 1998 22:30:16 -0600 Subject: Re: Bending X-Rays Linda Racine wrote: > > Donna and hmc... > > ... Not to contest you, but it has made enough of a (possible) difference that Dr. Horton is requesting another set of bending x-rays, done lying down, even though I'll probably have to put off surgery because of it (I'm 5 hours from his office) I'll let you guys know if there is a difference in results when I go back to do this in early July. - --hmc. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: hmc Date: Wed, 17 Jun 1998 22:51:10 -0600 Subject: Re: Fusion failures (sampling bias?) Avoid the lumbar spine COMPLETELY, as > verified studies show that the levels of chronic pain caused by lumbar > fusions are huge, creating more problems than are solved. People can > physically live with pretty big unfused curves, and as I hear it, less pain > ... Alright, maybe I'm going after a little false security here, but play along, would you guys? Could we please take a little informal survey? Respond on- or off-list to me ( so we don't flood the list), either way, but would all the lumbar or thoraco-lumbar fusion patients please raise your modems? OK, good. Now would you include your age, sex, pregnancy-or-not (not required if you are male ;-), age at fusion, and current age, plus any other goodies I should know. Just a stats format (whatever you can do most quickly) will be fine. I know this is unusual, but this is the kind of fusion I am currently "enlisted" for at 22. I want to have "my eyes open" --that's why I'm on this list... Thanks! - --hmc. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Linda Racine Date: Wed, 17 Jun 1998 20:59:47 -0700 Subject: Re: Bending X-Rays hmc... Your surgeon prefers standing bending xrays. Mine prefers lying bending xrays. I think it was David Bradford, King of scoliosis surgery ;-), who said that it didn't make any difference as long as he knew at which he was looking. 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: hmc Date: Wed, 17 Jun 1998 23:23:51 -0600 Subject: Re:Loved ones' reactions Gail-- I responded to Cyndi on this same topic, but it's to you, too. As far as parents reactions, my parents have always just acted like it was something to live with that didn't actully cause me problems (compared to my sister's handicaps, it's small, I suppose), and we never actually dealt with it in any way. It always embarrased me horribly, and I, too, completley ignored it (the word "scoliosis" could embarrass me to tears in my childhood and early teens!) until I couldn't do so anymore (i.e. now). It's not just you and yours, Gail. BTW,I agree on the list-scientific way- comment. - --hmc. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: hmc Date: Wed, 17 Jun 1998 23:00:43 -0600 Subject: Re: Fusion failures (sampling bias?) PrfBones@aol.com wrote: > I developed a pseudoarthrosis 12 years following surgery. A pseudoarthrosis > is a joint where no joint should be and they can develop at anytime. It can > and often does happen years later. We've been through this before. > ... I know we've been through this before, but I don't remember (or maybe I never really understood). Isn't a pseudoarthrosis made when the spine has to bend abnormally above and below the fusion to compensate in every day activities? Isn't it like a joint on each end of, well, your thigh bone, in your back, and a normal result of spinal fusion? And what's it called when these joints begin to have problems i.e. deteriorate? What's a failed fusion called? And is there such a thing as "pseudoarthrisis"or "pseudoarthritis", or is this just a dreadful mis-spelling, mis-understanding on my part? I'm just full of questions, I know... :*) - --hmc. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Randy and Teri Nelson" Date: Thu, 18 Jun 1998 00:20:00 -0700 Subject: Re: Hardware removal I just found out a couple of days ago that I too have to have my harrington rod removed. I have developed flat-back syndrome and have to have major surgery. I am so scared right now and at the same time am looking forward to having something done to stop the pain that I am in. I had my initial scoliosis surgery done in 1975 when I was 14 years old. My surgery corrected my curve from 57 deg. to less than 20. I have led a very productive life until about the last 5 years or so when I started to have lower back pain. The pain is so unbearable now and it is due to the fact that I am fused down to the L-5 area and am having problems with degenerating disks. I haven't decided when or where to have the surgery yet....still trying to get out of the shock that I am in I guess. If anyone in here has any information or has had this sort of surgery before please write me. My email address is rtjjj@tbcnet.com. Thank you so much! Teri Nelson ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ End of scoliosis V1 #862 ************************ 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". 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