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Thread: Janzen Bracing System for JIS

  1. #46
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    Quote Originally Posted by Dustin76 View Post
    It's amazing what gets past peer review sometimes. You think the authors of BrAIST did it on purpose? Could have been an honest mistake that they just don't want to own up to. Were the authors of BrAIST biased toward bracing?
    I think the reviewers certainly flagged that omission yet the paper was still published without final Cobbs.

    It is not possible for experienced researchers studying bracing to honestly miss putting in the arguably most key data.

    An author was asked about the range of Cobbs and IGNORED the question.

    I think it is inescapable at this point that had they included the final Cobbs it would have blown their conclusions about the dose-response curve and the general conclusions completely out of the water.

    I have to look up their funding. It may be possible to FOIA the final Cobbs.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  2. #47
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    Quote Originally Posted by Dustin76 View Post
    These are valid points, Linda.

    I guess my thinking (subject to change) at this point is this. My son is already 25 degrees. My daughter is 20. They are braced at neutral spine position right now - 100% in-brace correction (better than average?) with no skin irritation or pressure points at all so far. My son is sleeping 9-10 (took him 3 days to get to this) hours through the night leaving just a few daytime hours to get to the 13-14 target right now. My daughter is in her first week adjusting but has slept though the night twice now. They will be tested every 3 months for lung capacity (baseline already noted). They will have at least 2 stand-up MRIs (no radiation) every 3 months to monitor in-brace/out-of-brace curve measures. The stand-up MRI will look at rib position as well. They each get 10-11(of 14) daytime hours out of brace for fun/exercise. We don't sit them in front of a screen all day long (hardly at all) like a lot of kids end up. With this monitoring, I really don't think we will do psychological or physical damage to our kids. I'm not going to let that happen. They should be on track to eventually enter puberty at 0 in brace and hopefully no worse than now out of brace (maybe better than now out of brace which is a loaded thing to say and hard to prove). I just don't want to look back and say, "I just wish we would have at least tried this." I'll pass on the cost to society thing other than to say we are likely going to pay for all or most of this out of our pocket. We are still going to consult a specialist (again) at Seattle Children's Hospital who is supposed to be an internationally recognized expert on this stuff.
    Why is this written like its a confidence trick? Your command of the material for 4 months seems to be a little bit too strong. I watched my Goddaughter go through Med school, she was top 5% percentile on the USMLE's of 19,000 students in the US many years ago, and you know more than her.

    I am having a really hard time believing you. I have around 30 reasons why I say this and see major holes. You need my list? You want to see my braces?

    Your empathy is not realistic, and you emit extreme disrespect to everyone. Many of us have paid a stiff price with scoliosis, I do not appreciate it at ALL!

    Why do you come on a public forum and request to talk with one person only? You could have simply done this by e-mail.

    Why don't you give it a break? Your pushing too hard. I mean really, don't you have to go to work today?

    Attachments here really are quite easy. I posted an example of one down below for you. You want me to give you instructions?

    Ed
    Attached Images Attached Images
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  3. #48
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    Quote Originally Posted by titaniumed View Post
    Why is this written like its a confidence trick? Your command of the material for 4 months seems to be a little bit too strong. I watched my Goddaughter go through Med school, she was top 5% percentile on the USMLE's of 19,000 students in the US many years ago, and you know more than her.

    I am having a really hard time believing you. I have around 30 reasons why I say this and see major holes. You need my list? You want to see my braces?

    Your empathy is not realistic, and you emit extreme disrespect to everyone. Many of us have paid a stiff price with scoliosis, I do not appreciate it at ALL!

    Why do you come on a public forum and request to talk with one person only? You could have simply done this by e-mail.

    Why don't you give it a break? Your pushing too hard. I mean really, don't you have to go to work today?

    Attachments here really are quite easy. I posted an example of one down below for you. You want me to give you instructions?

    Ed
    I came on this forum to interact with people who have, or are, going through similar things as my wife and I. I admit that I jumped the gun with any recommendations to others, but I am set on documenting what I am going through and interacting with whoever wants to discuss.

    Going through med school does not make anyone know that much about such a specific area as this. Going through med school makes a person a medical generalist that knows more about scoliosis than the average person on the street. Medical students have so much to learn that they can't know a ton about scoliosis unless they specialize. Anyone with a science background can learn more about scoliosis than a general practice MD has memorized within a few hours. I'm no genius. I'm just putting a lot of work into this because I care about my kids.

    I'm not following the "only want to talk to one person" thing. I'll talk to anyone one here via forum, e-mail, phone or whatever.

    My status on her initially was only for posting until a couple days ago. I couldn't edit posts or post images until then.

    I do read a lot, especially when my kid's health is on the line..........don't know what else to say about my command of the literature. There is so much out there that I feel like I have just scratched the surface. I practice evidence based intervention as a physical therapist, so I have some idea about how to look things up.

    I should get a chance to post my kids images this weekend...I want to include my daughter's too who is just starting.

    I just want to make reasonable informed decisions for my kids and I thought this forum could help me process.

    Other than that, I guess this is an open public forum. If you don't want to read my stuff, then don't. If you want to post your 30 reasons, go for it. Post whatever you want and I'll do the same within the agreed upon rules of the forum.

  4. #49
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    Quote Originally Posted by Dustin76 View Post
    I came on this forum to interact with people who have, or are, going through similar things as my wife and I. I admit that I jumped the gun with any recommendations to others, but I am set on documenting what I am going through and interacting with whoever wants to discuss.
    I think we can move past the appearance of you being a chiro coming here to advertise. I believe you are a PT with two children with JIS. It will be valuable to document your family's journey.

    How are your children imaged? Are they in brace or immediately out of brace? What about the other children?
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  5. #50
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    Dustin, Watching the effects and outcomes of various scoliosis cases all these years as a patient is not an easy thing. Knowing patients, members and friends here is hard sometimes when outcomes are difficult. There is a deep profound sadness which I hope explains why I do a lot of joking around here, it helps somewhat. Seeing small kids with scoliosis takes it to the nth degree I guess, I could walk into a cadaver room no problem, walking into a Shriner's or Ped center would kill me. I don't think I could do it. I would fall to pieces. I do try to keep things light and jovial here, because of the suffering that I know about. Coming up with some sort of support when there are no answers is tough. Living with scoliosis can be especially difficult sometimes.

    Bracing studies can help somewhat for all that is worth, if one has a 57% value, what do you do? Sounds like predicting weather. Either is going to rain, or it isn't. Do I walk around with an umbrella? No. Nobody does this. Its the same with scoliosis curves or any disease. You don't really know because everyone is different. They thought I had cancer, I did not. I was only told the last 5 seconds right before they knocked me out. Why, because they didn't want to scare me that much more. Its one thing to be an adult, but medical diagnosis is like having a ton of bricks fall on you. Doing this with small kids will have an effect, there is no doubt. From disbelief, to depression, to being angry, which can take a long long time if at all to get over. This is why watching and waiting and monitoring is so important. Its not the back, I guess you could say its our psyche. I have seen this with several of my family members. The diagnosis of disease changes people. Lack of hope set's in and only the strong that have the ability to be positive make it through. Having the ability to ignore scoliosis through the years kept me going. I always thought of it as being a small icon on your desktop, aware, and only looking at every once in a blue moon. X-rays once per year, my whole life. I have quite a pile of them.

    If you are a parent, I really like your proactivness. There is nothing worse that being ignored as a patient. For example, comments like "It doesn't hurt" are especially damaging, some of us have heard this. I would imagine it can be a challenge dealing with scoli kids, the things that are said and done are critical. For instance, Junior comes from school after a really hard bracing day, You ask, "How was your day" when he pissed his pants trying to get the brace off in time and laughed at in the boys room. These things are not easily admissible. Are you going to get the truth? Probably not....Would I push my kid to wear the brace? Probably not. Why they put the nylon straps on the back of these braces is beyond me. I might as well put my belt on backwards with the buckle behind my back. They need to incorporate a plastic strap, just like a ski boot buckle on the side of the brace so that adjustment is easy. When your t-shirt creases under the brace, this hurts like hell. Or the jeans that are put on under the brace when the belt loops push into your spine with 100 Ft/Lbs of force. Having a quick adjust and release means a lot. Some braces hang down low. I rarely post on bracing and Chiro threads, we sure have had a host of them. Bad memories I guess. Not a walk in the park I can tell you that.

    If a child has a 20 degree curve, monitor it first through a Scoliosis trained surgeon. Chiros and Orthoist are not medical doctors. In England, they are not allowed to use MD after their name. I used Chiro only after in adulthood for pain reasons, and braced for skiing safety. Boy did my armpits get tough, let me tell you! And sweat turns freezing in a hurry when you do this. Also with approx 1/2 breathing capacity due to the restrictions of the brace. I also have a post surgical brace. Bracing testimonials almost always have the times spent out of brace. Which isn't much. Years ago, it was 23 hours per day and included sleeping in it. Its like sleeping in a plastic container so side sleeping means your arm hangs on the brace all night long. The surgeons did not want to operate on me in 1976. I was a candidate in 1975 with a 50/50 S curve.

    I do like the bracing concept. It seems to make sense, but trying to calculate is iffy at best. When talking about bracing or tethering, or surgery, there are no guarantees. Bracing when not necessary does more damage to the rest of the individuals involved. If you end up at 49 in high school, your not a success. You are now a surgical candidate with a future date and many wait because they are scared. Its hard to destroy a childhood, the best years of your life. There are countless testimonials on this. Many were on the British forum years ago. Hard to say, maybe they don't brace as well in England ? Your guess is as good as mine. There are a bunch of bracing video testimonials online today, some of them through major hospitals, and some have that silver lining. Funny how that works, bracing is good business. You might take a look at some of these. If you wish I will start a thread on video testimonials. Bracing on the new 3D printed braces will take time for outcomes. Its the new thing, like CBD, or Stem cells, everybody jumps on the bandwagon and only after do you find out you have damaged your liver and kidneys.

    I don't know if insurance companies pay for braces....I have heard of people looking for guarantee's on parts worth $1. If the insurance company has issues, that might tell you something. Of course there are no money back guarantees with anything including braces. Its also very expensive.

    The title of this thread "Bracing System That Reduces Curves" should be changed. When the bulk of your audience basically braced at some point, and failed and ended up doing surgery anyway, we all know that's not true. It would be better to simply title it "3D Printed Bracing", and that would be fine. It doesn't state a cure which we all have dreamed about our whole lives, or guaranteed correction for what that is worth. Scoliosis is complicated. As adults, curves don't matter too much, its mostly pain that drives us to surgery. Kids are about progression. Many of us are thankful for our surgeons and the work that the SRS and Cotrel and other scoliosis foundations have done. Ultimately, its the old scoliosis patients that paid with their lives that we need to thank.

    If you are who you say you are, I am sorry for interrupting. If you are a professional sales consultant, selling with an agenda, there is no selling here. Its happened here in the past a few times. Scoliosis patients in trouble that need surgery will ask for referrals, that is different when things get extremely painful, its an act of mercy, and best to offer multiple scoliosis surgeons names because of the guilt should something go wrong. I don't refer my surgeon anymore, even though I think he is excellent. If someone lives close to a top scoliosis center, that would make more sense. The top scoliosis training centers are UCSF, HSS, TCSC, Washington University. Its best to have training stats checked when selecting.

    When discussing a topic, if its generally well known, there is little need to post a link. When you link, there is no cherry picking. There is no stating that bracing actually works.

    At some point here soon, I suppose all this will be in the past and they will be at least able to do predictions on scoliosis curves with neurobiometrics. This industry will drive due to AI. After they do extensive brain mapping for some time, hopefully they will be able to figure out how our brains work and whats kinda scary, how we think. This is already in process, its the next step. They just announced that every citizen in China has been entered into the biometric system, and they can identify every person walking down the street. The Chinese Communist Party sure likes to keep their tight grip on things.

    If you truly are a parent, I hope some of this helps. I cant imagine being a parent of a scoli kid, I would be horrible. Many of the parents here are of extreme value to the forum. I am not a parent, just trying to survive scoliosis....never had kids you know. Was too afraid I guess. My dad had scoliosis also.

    I truly hope the best for your kids, I really do.

    I have to travel down to South America so will be quite busy.

    Thank you Sharon, and Linda, your the best.

    Ed
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  6. #51
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    Thanks for posting that, Ed. It is a great rendition of the state of affairs.

    Dustin is indeed proactive.

    I agree with re-titling this thread to add "JIS". Patients and parents dealing with AIS are going to get false hope if you don't add the "JIS" part. And reducing JIS curves with braces is not unique to those guys. That has to be made clear.

    WRT AIS, I think surgeons and researchers need to confront the issue that most of their braced patients are going to end up with a curve that is known to be NOT protective against needing surgery in the future when it is harder both physically and logistically. Every surgeon and researcher has the obligation to define success and make sure the patients and parents known what they mean and that they rarely if ever mean that bracing success means no need for surgery over a lifetime.

    And every surgeon and researcher has an obligation of intellectual honesty. The BrAIST researchers seem to be failing on this score.

    All chiros messing around in scoliosis fail spectacularly on this score because they have NO training in treating scoliosis. As Dr. Novella states, they are unregulated and do whatever the hell they want.

    https://www.businessinsider.com/chir...ovella-2016-10
    Last edited by Pooka1; 10-26-2019 at 06:02 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #52
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    I've never been to a chiropractor. Many intelligent people swear by them. I've noticed that many doctors work with chiropractors. Do they do this because they sanction what chiropractors have to offer or is it just to give in to patient demand?

    I get that what is being said here is that chiropractic doesn't work for scoliosis and it's dangerous to think it does. I wonder if it has any value at all. No more than massage maybe?

  8. #53
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    As far as I know, the only thing chiro has been shown to help is lower back pain but it is no better in that regard than medical treatments. Thus whatever the chiros are doing to help lower back pain is probably something from the medical world and is not in fact chiro.
    Last edited by Pooka1; 10-26-2019 at 11:59 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  9. #54
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    Quote Originally Posted by Pooka1 View Post
    As far as I know, the only thing chiro has been shown to help is lower back pain but it is no better in that regard than medical treatments. Thus whatever the chiros are doing to help lower back pain is probably something from the medical world and is not in fact chiro.
    I never got any pain relief or condition improvement for low back pain from chiropractors. I was, however, able to manage neck pain, after finding the right chiropractor (after years of treatment with the wrong ones). I guess it's different for all of us.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  10. #55
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    Quote Originally Posted by titaniumed View Post
    Chiros and Orthoist are not medical doctors. In England, they are not allowed to use MD after their name.
    As far as I know, they're not allowed in the U.S. either. :-) Chiros use the Dr. title because their degree is a Doctor of Chiropractic, though they are not even close to traditional curriculum for medical doctors. As an aside, most physical therapists, at least in larger cities, are doctors of physical therapy, but I've never seen a PT call themselves Dr.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  11. #56
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    Quote Originally Posted by LindaRacine View Post
    As far as I know, they're not allowed in the U.S. either. :-) Chiros use the Dr. title because their degree is a Doctor of Chiropractic, though they are not even close to traditional curriculum for medical doctors. As an aside, most physical therapists, at least in larger cities, are doctors of physical therapy, but I've never seen a PT call themselves Dr.
    Right I think Ed meant "Dr." title. It is beyond outrageous and very misleading that chiros can call themselves "Dr." on their websites and completely bury the fact that they are not medical doctors but chiros. They are aware of the perception problem.

    In re PTs, I agree with you about PTs not using "Dr.". I think they are now required to get the doctorate and I think it is three years. No more masters level. I am sure Justin knows. But just like PhDs, because most people will assume you are a medical doctor, I assume DPTs rarely use the "Dr." title though they have WAAAAAAAAAAAY more ground to stand on in using it than any chiro who routinely use the "Dr." title. It is skin crawling to see that given the voodoo education chiros receive.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  12. #57
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    Quote Originally Posted by Pooka1 View Post
    Thanks for posting that, Ed. It is a great rendition of the state of affairs.

    Dustin is indeed proactive.

    I agree with re-titling this thread to add "JIS". Patients and parents dealing with AIS are going to get false hope if you don't add the "JIS" part. And reducing JIS curves with braces is not unique to those guys. That has to be made clear.

    WRT AIS, I think surgeons and researchers need to confront the issue that most of their braced patients are going to end up with a curve that is known to be NOT protective against needing surgery in the future when it is harder both physically and logistically. Every surgeon and researcher has the obligation to define success and make sure the patients and parents known what they mean and that they rarely if ever mean that bracing success means no need for surgery over a lifetime.

    And every surgeon and researcher has an obligation of intellectual honesty. The BrAIST researchers seem to be failing on this score.

    All chiros messing around in scoliosis fail spectacularly on this score because they have NO training in treating scoliosis. As Dr. Novella states, they are unregulated and do whatever the hell they want.

    https://www.businessinsider.com/chir...ovella-2016-10
    I agree, add JIS. I knew I was forgetting things.

    I didn't pay for Crystals education as a Ped Doc to have all parents skip that process. She is trained to spot disorders in children from a 1/4 mile away. Its been 16 years, been an MD for 6-1/2 years. She will specialize, lead a children's trauma dept with life of death 2 minute decision making and will have more training than my scoliosis surgeon. Spine education is included but she is not into spine because it doesn't save lives. She is into emergency related medicine. She actually will not talk to parents or patients, she will be on call or sleeping at the hospital. ER room only. She took me in a cadaver room many years ago, and we inspected things. They had sawed a spine in half perfectly top to bottom, and it looks exactly like the diagrams in professional medical books. That was amazing to be able to get within 10 inches and inspect a spine. She came over with a heart, and was identifying chambers, then she told me to get gloves because I have a brain for you to hold. I just stood there in total amazement. There was no smell. The human body is complicated. I saw everything. We were in there for 2 hours. When they operate on someone, there is no doubt as to where they are, some surgeon's on videos will pre identify what they are looking for. Usually a second or two later, they will say, there it is!

    I completely with your post 100%

    Trying to pack, taking a break. I will start a tread, "Are vacations really worth it with scoliosis" I have my doubts sometimes.

    I hope you liked my attachment, for Scientology, simply replace the Palmer photo with an L Ron Hubbard photo.

    Ed
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  13. #58
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    Quote Originally Posted by Tina_R View Post
    I've never been to a chiropractor. Many intelligent people swear by them. I've noticed that many doctors work with chiropractors. Do they do this because they sanction what chiropractors have to offer or is it just to give in to patient demand?

    I get that what is being said here is that chiropractic doesn't work for scoliosis and it's dangerous to think it does. I wonder if it has any value at all. No more than massage maybe?
    We have the right to choose any medical direction we want in the United States. Its the freedom we have, that's just one reason why we are the best country in the world.

    My surgeon didn't have a problem with Chiro. My spine was wasted anyway and needed the full rebuild. There does come a time when surgery really is the only answer. I was one of those cases. I did have an Osteopath do a leg adjustment that Chiropractors do not do, and it took 30 years of sacral tension out in 1 second. It was like popping a weather balloon. The rest of the adjustments he did, Chiros can do.

    I used these guys because I am or was a skier. I also am very funky with medications....

    I guess as a skier, you might say I was tight. When I was younger than I am now, my body was just steel all over. I did really hard workouts my whole life. Chiro was really the only way to get relief from the binding. They would have to really wail on me sometimes. They would also do the thoracic adjustments laying supine with fist under each level. One time, I was hurting bad and made some sketches for someone on how to do an adjustment, and he did it, and it worked. I have had spondies from ski crashes with x-ray proof. I also used a Chinese Accupressure therapist who worked wonders. I don't know why, but she was amazing. She wanted to get married, but I told her I was afraid she would give me the finger. (scoliosis forum humor) Sometimes, she was painful especially with the head pressure. She would push hard with her fingers on the top of my skull and say "It is necessary" I would go in wasted, she would work on me, and I would go skiing the next day.

    Linda, is right, you have to have the right Chiropractor. I have used around 12 of them in the past.. My main Chiropractor is a smart guy and extremely honest. He told me I needed surgery, my adjustments were my decision as long as I got relief. I did Vax-D, computerized traction, Pneuback system, (EXCELLENT) for scoliosis. and of course all of the machines they had there. My Chiro ordered a lumbar stretching machine for me and I had that next to my office at work. I also had an arch table which is also a very good device to own. These all for pain, not correction.
    http://www.inversion-table-therapy.c...Bench/2327/1/1

    http://www.pneumex.com/

    https://www.topfitnessmag.com/stretc...chine-reviews/

    Of course, we are fused so don't need these items anymore.

    I spent over $100,000 on massage in my 40's. Again, before surgery. Scoliosis is not cheap.

    Ed
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  14. #59
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    Quote Originally Posted by titaniumed View Post
    Dustin, Watching the effects and outcomes of various scoliosis cases all these years as a patient is not an easy thing. Knowing patients, members and friends here is hard sometimes when outcomes are difficult. There is a deep profound sadness which I hope explains why I do a lot of joking around here, it helps somewhat. Seeing small kids with scoliosis takes it to the nth degree I guess, I could walk into a cadaver room no problem, walking into a Shriner's or Ped center would kill me. I don't think I could do it. I would fall to pieces. I do try to keep things light and jovial here, because of the suffering that I know about. Coming up with some sort of support when there are no answers is tough. Living with scoliosis can be especially difficult sometimes.

    Bracing studies can help somewhat for all that is worth, if one has a 57% value, what do you do? Sounds like predicting weather. Either is going to rain, or it isn't. Do I walk around with an umbrella? No. Nobody does this. Its the same with scoliosis curves or any disease. You don't really know because everyone is different. They thought I had cancer, I did not. I was only told the last 5 seconds right before they knocked me out. Why, because they didn't want to scare me that much more. Its one thing to be an adult, but medical diagnosis is like having a ton of bricks fall on you. Doing this with small kids will have an effect, there is no doubt. From disbelief, to depression, to being angry, which can take a long long time if at all to get over. This is why watching and waiting and monitoring is so important. Its not the back, I guess you could say its our psyche. I have seen this with several of my family members. The diagnosis of disease changes people. Lack of hope set's in and only the strong that have the ability to be positive make it through. Having the ability to ignore scoliosis through the years kept me going. I always thought of it as being a small icon on your desktop, aware, and only looking at every once in a blue moon. X-rays once per year, my whole life. I have quite a pile of them.

    If you are a parent, I really like your proactivness. There is nothing worse that being ignored as a patient. For example, comments like "It doesn't hurt" are especially damaging, some of us have heard this. I would imagine it can be a challenge dealing with scoli kids, the things that are said and done are critical. For instance, Junior comes from school after a really hard bracing day, You ask, "How was your day" when he pissed his pants trying to get the brace off in time and laughed at in the boys room. These things are not easily admissible. Are you going to get the truth? Probably not....Would I push my kid to wear the brace? Probably not. Why they put the nylon straps on the back of these braces is beyond me. I might as well put my belt on backwards with the buckle behind my back. They need to incorporate a plastic strap, just like a ski boot buckle on the side of the brace so that adjustment is easy. When your t-shirt creases under the brace, this hurts like hell. Or the jeans that are put on under the brace when the belt loops push into your spine with 100 Ft/Lbs of force. Having a quick adjust and release means a lot. Some braces hang down low. I rarely post on bracing and Chiro threads, we sure have had a host of them. Bad memories I guess. Not a walk in the park I can tell you that.

    If a child has a 20 degree curve, monitor it first through a Scoliosis trained surgeon. Chiros and Orthoist are not medical doctors. In England, they are not allowed to use MD after their name. I used Chiro only after in adulthood for pain reasons, and braced for skiing safety. Boy did my armpits get tough, let me tell you! And sweat turns freezing in a hurry when you do this. Also with approx 1/2 breathing capacity due to the restrictions of the brace. I also have a post surgical brace. Bracing testimonials almost always have the times spent out of brace. Which isn't much. Years ago, it was 23 hours per day and included sleeping in it. Its like sleeping in a plastic container so side sleeping means your arm hangs on the brace all night long. The surgeons did not want to operate on me in 1976. I was a candidate in 1975 with a 50/50 S curve.

    I do like the bracing concept. It seems to make sense, but trying to calculate is iffy at best. When talking about bracing or tethering, or surgery, there are no guarantees. Bracing when not necessary does more damage to the rest of the individuals involved. If you end up at 49 in high school, your not a success. You are now a surgical candidate with a future date and many wait because they are scared. Its hard to destroy a childhood, the best years of your life. There are countless testimonials on this. Many were on the British forum years ago. Hard to say, maybe they don't brace as well in England ? Your guess is as good as mine. There are a bunch of bracing video testimonials online today, some of them through major hospitals, and some have that silver lining. Funny how that works, bracing is good business. You might take a look at some of these. If you wish I will start a thread on video testimonials. Bracing on the new 3D printed braces will take time for outcomes. Its the new thing, like CBD, or Stem cells, everybody jumps on the bandwagon and only after do you find out you have damaged your liver and kidneys.

    I don't know if insurance companies pay for braces....I have heard of people looking for guarantee's on parts worth $1. If the insurance company has issues, that might tell you something. Of course there are no money back guarantees with anything including braces. Its also very expensive.

    The title of this thread "Bracing System That Reduces Curves" should be changed. When the bulk of your audience basically braced at some point, and failed and ended up doing surgery anyway, we all know that's not true. It would be better to simply title it "3D Printed Bracing", and that would be fine. It doesn't state a cure which we all have dreamed about our whole lives, or guaranteed correction for what that is worth. Scoliosis is complicated. As adults, curves don't matter too much, its mostly pain that drives us to surgery. Kids are about progression. Many of us are thankful for our surgeons and the work that the SRS and Cotrel and other scoliosis foundations have done. Ultimately, its the old scoliosis patients that paid with their lives that we need to thank.

    If you are who you say you are, I am sorry for interrupting. If you are a professional sales consultant, selling with an agenda, there is no selling here. Its happened here in the past a few times. Scoliosis patients in trouble that need surgery will ask for referrals, that is different when things get extremely painful, its an act of mercy, and best to offer multiple scoliosis surgeons names because of the guilt should something go wrong. I don't refer my surgeon anymore, even though I think he is excellent. If someone lives close to a top scoliosis center, that would make more sense. The top scoliosis training centers are UCSF, HSS, TCSC, Washington University. Its best to have training stats checked when selecting.

    When discussing a topic, if its generally well known, there is little need to post a link. When you link, there is no cherry picking. There is no stating that bracing actually works.

    At some point here soon, I suppose all this will be in the past and they will be at least able to do predictions on scoliosis curves with neurobiometrics. This industry will drive due to AI. After they do extensive brain mapping for some time, hopefully they will be able to figure out how our brains work and whats kinda scary, how we think. This is already in process, its the next step. They just announced that every citizen in China has been entered into the biometric system, and they can identify every person walking down the street. The Chinese Communist Party sure likes to keep their tight grip on things.

    If you truly are a parent, I hope some of this helps. I cant imagine being a parent of a scoli kid, I would be horrible. Many of the parents here are of extreme value to the forum. I am not a parent, just trying to survive scoliosis....never had kids you know. Was too afraid I guess. My dad had scoliosis also.

    I truly hope the best for your kids, I really do.

    I have to travel down to South America so will be quite busy.

    Thank you Sharon, and Linda, your the best.

    Ed

    Thanks Ed. I'm not selling anything. I think it's reasonable to change the thread title.

    Dustin

  15. #60
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    How do I change the thread title? I see how to edit posts.

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