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  • titaniumed
    replied
    2nd opinion's are totally acceptable....I think that if you have 2 wildly differing opinions, let's say on surgical procedure you have a problem. Both opinions should match or be similar....If you have 30,000 beans in a jar, and get counts of 25000 and 35000, you have to count again, and have a match. If you don't have a match, throw the beans out. (smiley face) Dr Pashman in Los Angeles used to do online 2nd opinions for roughly $300 provided you have the x-rays burned to disc and some data. I am not sure if he still does this? Always get your diagnostic records burned to disc. As scoliosis patients these things are helpful down the road should we move or a surgeon retires. When they retire, the records go right into the trash. Do you have x-rays? X-rays tell the story. With COVID surging, trying to do this remotely is probably a better option....

    One adult patient here a few years back was asking about tethering, and had a 2nd opinion from Dr Lenke in NYC who advised against it. Then it was year or so later when Sharon posted about all the tethering breaks....and also the Magec (growing rod) breaks which was very disheartening. I have always been a believer in technology and waited 32 years until my surgeries. I remember when the pedicle screw was launched in the US in 1986, it was in the news, and I thought that was a great vertebral attachment method. I was a Luque wire candidate in 1975 but saw a lot of head shaking. They just didn't want to go there since I needed fusion to the pelvis at age 16, and they just don't fuse kids to the pelvis unless it's really bad. JScoli is probably the youngest member here fused all the way down at roughly age 30...I hope she is doing well...

    I can give a whole host of reasons why one might need a second opinion, and also why people should wait on new technologies. CBD a few years back was hyped to the max. All disease was going to be cured by a weed.... Ha ha The CBD stocks ran, and that was fun but when the FDA came out with the liver warnings, and that party balloon popped. The Federal Government even legalized it there was that much hype. Buy the hype, sell the news....earnings reports can be like rod breaks. Even with incredible companies like Apple. (For short term traders, not long term investors)

    Help from Aguardiente....ha ha The owner of those horses is a billionaire rancher and the other riders who were his lawyers told me to do whatever he wants, so you gotta do what you gotta do to get the job done. (smiley face) If you dig here on my posts, you will see efforts at comedy. This all probably due to me looking for a transfer of thoughts, a mind release perhaps. When you are in pain and laugh really hard at something, the pain goes away. if you think about pain, that's EXACTLY what you get.

    What town are you from in Colombia and what year did you leave? There have been dangerous periods down there over the years. Of course, I remember when there were 9 murders per day in NYC in 1978. I spent a lot of time in New York back then.

    Talking about Colombia, Dr Juan Uribe is from Medellin and he operates out of Phoenix. His stats are credible...he also utilizes 3D printing of the spine which is a valuable tool. They 3D print organs now, and is especially helpful in heart procedures.

    For Texas, Dr Michael Lagrone is probably one of the most senior scoliosis surgeons. He is in Amarillo. He is also a Moe Fellow out of Twin Cities. Back in the old days, that was the place to be if you had scoliosis, or were a doctor interested in scoliosis. My surgeon also trained at Twin. They founded the SRS there. There are a few Lagrone patients here, use search.
    https://www.tcspine.com/about-us/dr-john-h-moe-exhibit/

    Usually when asked, a few names are pitched in an area because of the guilt should something go wrong....You also have to understand that surgeons that work on incredibly challenging deformity cases can have higher complications stats. Also, reviews on anything can vary and are highly dependent on the source....It almost makes reviews worthless unless you know who is doing the review. You can have photos of hotels that look great until you get there. You can have professional financial analysts recommend a security that goes south. You can have a fantastic deformity surgeon have things go wrong beyond their control because we are extremely complicated. Medical science is infinitely more complicated than putting a man on Mars.

    Of course I never would have had successful fusion surgery if I hid my head in the sand like an ostrich. Sometimes it's the chance we have to take.

    It's good that you are posting.....discussion helps with the many questions we have, and you have to ask. Discuss all aspects of the disease. Pros and cons, face things head on and support one another. This is something that Franklin D Roosevelt did at Warm Springs, Georgia back in the 20's battling Polio. I totally respect what he did back in those days...especially what he did with the Orthopedic Society by stressing the importance of warm water therapy as a lay untrained medical person. His push with the March of Dimes helped with the polio vaccine after his death. Experts now say his symptoms didn't match polio and that he had Guillain Barre...I knew someone that had Guillain Barre and when you get older, you meet people with various diseases. When you have a disease, you pay attention. When you don't have to struggle with a disease, it doesn't mean much, sort of like some of the COVID denial people out there these days....argh%@#!!!

    Ed

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  • Mamichi
    replied
    And I am in San Antonio. I forgot to answer that question.

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  • Mamichi
    replied
    Hi Ed,

    Thanks for all that great advice. I still need to develop a relationship with my surgeon. I only had 1 appointment with him, and then one with his PA which focused on the osteopenia medication. I hope to get to know him more in my next appointments. And I hope to meet another doctor to compare. What you said about the patient-dr relationship is very true.

    Mamichi is not my real name, it was my nickname growing up. My real name is Ana Maria. I’m not Japanese, I’m Colombian. I saw in one of your posts that you were horseback riding in Colombia after your surgery with the ‘help’ of aguardiente. That made me laugh.

    Thanks again for all the information.
    Last edited by Mamichi; 12-19-2020, 08:32 PM.

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  • titaniumed
    replied
    Ok, I really didn't know where you were at with all of this, (internet communication is not easy) some people reject surgery altogether and it's a shame to get rejected for any reason by waiting too long.....Scoliosis surgery is all about timing and it's all up to you (and your scoliosis surgeon monitoring you). I guess I just wanted to make sure the scales of indecision were equalized. Surgery or no surgery. Does this make sense? Doing surgery "also" includes trying all options rather than doing nothing....(Looking at the flip side of the coin).

    One of the things that happens when we go in on a first visit is that we are SCARED TO DEATH....That first doctor-patient interaction, getting your big toe wet is a delicate process when we are emotionally upset having to have to accept the reality of a major surgical procedure. Surgeons have to be careful not to scare us too much. I really think it's important that you go back in for appointments to discuss things further....Of course when you get closer to your date, good surgeons will bring up complications which is hard to accept. My surgeon laid down some heavy stuff on me which wasn't easy.... I was guaranteed 100% that something would go wrong. What would go wrong we didn't know, and complications can be as easy as a stubbed toe to going blind, or even death....If and when you do surgery, you will sign informed consent waivers stating that you have been informed. Obviously, it's impossible to be warned on everything, so the commitment in doing surgeries like this are full 100% commitments no matter what happens. It's the definition of commitment. I had some trouble with this...and until my surgeon told me at the end that "it will help", that's when I got that green light, that's when I set my dates. The doctor-patient relationship really is the heart of medicine....You have to be comfortable and trust your surgeon and trust takes time. If you have a qualified surgeon and maybe your thoughts are that he or she isn't the right surgeon, give it some time and just listen. Personalities have to mesh....

    SRS does not recommend bracing for adults. Linda mentioned a soft brace, and that's one of the tools in our tool belt. I wore both soft and hard braces when I went skiing years ago....it will offer some support which helps some. Heck, I even tried scuba diving for scoliosis and it was a GREAT excuse to leave work and fly out to Hawaii on a moment's notice! (smiley face) I did this often...and some of those trips were in MAJOR pain.....I was so close to going to the hospital in Kona and begging to be knocked out. Of course they won't do this for us. Scuba diving teaches relaxation, breathing techniques and of course not panicking about anything. It's a helpful adjunct to living with scoliosis.

    Linda has mentioned doing surgery as a last resort....and this is a tough one which deserves serious thought. I think it's all relative to pain and probability of future disease, degeneration and function. Quality of life...It's very case specific.

    The calcium and vitamin D are things you should discuss with your surgeon. Discuss future planning, no date setting, and he will be thinking about your case for a few years. My surgeon thought about my case for 2-1/2 years. I think it helped. I was not ready for surgery when I first met my surgeon....I had a full plate with my business but I knew I had to start talks. I had no timing but I knew I had to prepare. Scoliosis surgeons need to have group meetings with scoliosis patients. Linda threw some great scoliosis meetings in San Francisco at UCSF years ago.

    It's important to be educated about scoliosis.

    Is your real name Mamichi? Sounds Japanese to me, are you from Japan? I had a lot of high precision Japanese machinery at my business. Mori Seiki and Miyano. They were excellent machines.

    Where in Texas are you?

    Ed

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  • Mamichi
    replied
    Originally posted by LindaRacine View Post
    Hi...

    I was also diagnosed with osteopenia around the time I was starting to consider surgery. I immediately started taking calcium, and have been taking it ever since. I have managed to reverse the osteopenia, and thankfully have never had any worries about it.

    Regarding your concern about when to have surgery, I ALWAYS think it should be a last resort. Hopefully, if/when you have surgery, you'll have a good outcome. But, I think it's important to remember that there are a lot of risks that go along with undergoing complex spine surgery. If you have surgery now, and end up with a long term complication that affects the rest of your life, I suspect you'll always wonder if you could have avoided it.

    --Linda
    Thanks, thatís how Iím thinking. Iím so happy to hear that you have reversed the osteopenia. Iím taking calcium too and Iím walking with small weights. I am skinny, and you need weight to make bones stronger so I started walking with light weights. And Iím eating more calcium rich foods. Hope I will reverse it or make it better.

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  • LindaRacine
    replied
    Originally posted by Mamichi View Post
    Thanks Ed. About my osteopenia, Dr. Geck said I should take Abaloparatide (Tymlos) at least 2 months before surgery. It builds up bone quickly but you can only take this med for two years. He did not seem alarmed by my osteopenia but of course it is a reason for concern. I do not take it lightly at all, it worries me.

    I am preparing myself for surgery, mentally and physically. Part of this preparation is exhausting all treatments and options, not because I think I will find a magic cure but because I want to have the peace of mind of knowing that I tried everything. If something goes wrong with my surgery, or even if it goes well, I want to know that I did do everything I could. It is an advice I receive often from people whoís had this surgery. Of course, there is the problem with timing; my age and my osteopenia do not work in my favor. Thatís why Dr. Geck said I should do it before 60. Iím thinking more like 55 if Iím able to manage the pain. But sometimes I think I should do it next year and get over with it. Start the recovery asap.

    Another thing I want to do is see another dr. I trust that dr. Geck is a great surgeon, but I believe getting a second opinion is part of the homework, right? Any recommendations in Texas?

    I truly appreciate all your advice and guidance.
    Hi...

    I was also diagnosed with osteopenia around the time I was starting to consider surgery. I immediately started taking calcium, and have been taking it ever since. I have managed to reverse the osteopenia, and thankfully have never had any worries about it.

    Regarding your concern about when to have surgery, I ALWAYS think it should be a last resort. Hopefully, if/when you have surgery, you'll have a good outcome. But, I think it's important to remember that there are a lot of risks that go along with undergoing complex spine surgery. If you have surgery now, and end up with a long term complication that affects the rest of your life, I suspect you'll always wonder if you could have avoided it.

    --Linda

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  • Mamichi
    replied
    Thanks Ed. About my osteopenia, Dr. Geck said I should take Abaloparatide (Tymlos) at least 2 months before surgery. It builds up bone quickly but you can only take this med for two years. He did not seem alarmed by my osteopenia but of course it is a reason for concern. I do not take it lightly at all, it worries me.

    I am preparing myself for surgery, mentally and physically. Part of this preparation is exhausting all treatments and options, not because I think I will find a magic cure but because I want to have the peace of mind of knowing that I tried everything. If something goes wrong with my surgery, or even if it goes well, I want to know that I did do everything I could. It is an advice I receive often from people whoís had this surgery. Of course, there is the problem with timing; my age and my osteopenia do not work in my favor. Thatís why Dr. Geck said I should do it before 60. Iím thinking more like 55 if Iím able to manage the pain. But sometimes I think I should do it next year and get over with it. Start the recovery asap.

    Another thing I want to do is see another dr. I trust that dr. Geck is a great surgeon, but I believe getting a second opinion is part of the homework, right? Any recommendations in Texas?

    I truly appreciate all your advice and guidance.

    Leave a comment:


  • titaniumed
    replied
    The title of this thread is Adult bracing. It should be changed to Adult bracing with Osteoporosis...

    Morning coffee stories.....My posts are dependent and will change on differing amounts of caffeine levels (smiley face)

    There was a lady (about age 60) at one of the old Dr Picetti scoliosis meetings in Sacramento that I met that was crying on my shoulder because she was rejected for scoliosis surgery due to severe osteoporosis. Linda was there, Dr Benson from UC Davis spoke. "Coca Cola is worse than smoking!" Some things you never forget....Anyway, I didn't know what to say and maybe that was best at that time. Ever since the screw pull problems that Susan had years ago, I scoured all the Osteoporosis material I could find. This was about 8-10 years ago. I even covered all the new technology osteoporosis related hardware sites and studies about "cortical" screws vs "pedicle" screws, and also cannulated (Tube, or hollow) screws for injecting synthetic bone cements through the screws to help anchor these screws in bone internally in the cancellous bone or spongy bone. Bone is spongy inside with a hard outside shell.

    Corticle bone- Outside bone
    Cancellous bone- Inside spongy bone
    https://en.wikipedia.org/wiki/Bone#Cancellous_bone

    After menopause, osteoporosis increases....if it's not addressed, it can be a problem for scoliosis patients. I am not going to link it because those that have osteoporosis or osteopenia need to cover the material. I linked the HSS site since it's an excellent site for scoliosis patients. I re-read some of the articles and it's spot on! I am not a Doctor, I just live the disease. It's amazing re-reading through the scoliosis articles, as a patient, its spot on. You can tell HSS Hospital for Special Surgery is a world leader when it comes to scoliosis.

    Scoliosis patients need to be evaluated by scoliosis specialists. (First!) They are the best doctors we have when it comes to scoliosis. When it comes to doing alternatives its best to ask and get permission. If there isn't a trained MD on site, they have no way of doing or even ordering the necessary tests (DEXA, blood work and urine tests etc) to rule out other pathologies.....They can tell a lot about you by these tests. My green light on my surgeries only came after all the blood work was ordered and analyzed. These are things that Chiropractors and Bracers cannot do, so without having a professional call the shots, they have NO BUSINESS directing scoliosis patient care. Some surgeons use Chiropractors....including mine, he has a Chiropractor in his office. Dr Coreman in Colorado is a Chiro and a scoliosis surgeon.

    There are a few members here that have osteoporosis. Susan and Ginger come to mind. I am having trouble remembering everyone these days. Both are extremely knowledgeable on osteoporosis and have extensive scoliosis histories. Members can use the PM system to contact other scoliosis patients for support.

    Scoliosis can be heartbreaking and produce a lot of tears at times. It's not something you can completely ignore, although we try to do this sometimes, but there are times when we need to know what to do. Sometimes mistakes are made and we find out that maybe that wasn't the greatest idea spending all this money. I spent a fortune on scoliosis. I figure 100K on massage. Chiro was much less since insurance covered a lot of those expenses....I have been adjusted by about 15 different Chiropractors over approx 25 years.

    I had my Chiropractor order me a $1600 professional stretching chair years ago. When you have lumbar curves, these are great to have. I had it down at work in my office. I also had a $400 arch table. It works by gravity, no effort required, and stretches lumbar like you wouldn't believe. You can lay prone or supine on these.
    https://blackfridayspine.wordpress.c...-cyber-monday/

    I have a correction: Dr Benson stated "Diet" coke as being the worst thing for the body.

    Diet Coke and Osteoporosis......Sounds like gasoline and a match to me....

    Ed
    Last edited by titaniumed; 12-19-2020, 10:02 AM.

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  • titaniumed
    replied
    Originally posted by Mamichi View Post
    By the way, my curves are T 38, L 55 The curve that has progressed is the lumbar curve.
    A progressing 55 degree lumbar curve at age 51 with osteoporosis. This is not good....

    I would scrap the brace and the Schroth.....and focus on surgery... (2 years max) Get your ducks in a row. (We can talk about all of this later)

    Your not experiencing neuropathic pains now, but if and when they happen, you will understand. Neuropathic pain is nervous system pain, spinal cord and nerve root stenosis (narrowing), impingement, disc herniation, bone spurs, and associated degenerative problems that bracing cannot address. Bracing cannot reverse or even stop this process. These are highly elevated pains and can be especially difficult to deal with. I am surprised you don't have sciatica. My sciatica felt like a horse kick in my hip (greater trochanter, 1" circle) and I also had the flame thrower on the top of my ankle. No exaggeration, I actually smelled smoke. I had 4 lumbar herniations. Just to give you an understanding about these sorts of pains, and also about how specific you need to be when describing your pains, type and location, to your surgeon. Be exact, and you will be surprised on how much they can tell about you.

    Things can get serious with surgical procedure when you wait. I had this happen and so have other members here....it makes for some difficult challenging posts. They do successful surgeries on scoliosis patients at older ages, but why take that risk? Any MD will be able to explain this to you.

    I am about 12 years ahead of you on a similar scoliosis situation and you will need a full fusion just like mine at some point. I am also an adult x-bracer, and did Chiro for a really long time.....Don't let these people snow you with the scoliosis related hoopla. Hoopla excitement! Get excited about NOT undergoing desperately needed surgery at YOUR expense. Install the fear! Thats the definition of scoliosis hoopla. When they show you Dr Winter movies of Luque rod procedures and talk surgery down, Turn around and walk out. I have had this done. Dr Winter was one of the original founders of the Scoliosis Research Society. 1966.

    I would buy David Wolpert's book through the forum. It contains need to know information.

    You need to get all your ducks in a row because you are at a crossroads. Pull up the old bootstraps.

    I would address ALL your medical needs through Dr Geck. Start with your Osteoporosis now through him. This will take time....it's important. Ask him about NSAID's Non Steroidal Anti-Inflammatories for pain. Celebrex, Diclofenac Etc. I used them for many years for pain, they work well, also hot water soaks and massage....Massage with no leverage moves. You need a good masseuse. NSAID's do not slam your brain, so you can think....They take care of 95% of the pain.
    https://en.wikipedia.org/wiki/Nonste...lammatory_drug

    Osteoporosis...Hospital For Special Surgery NYC.
    https://www.hss.edu/condition-list_osteoporosis.asp

    https://www.hss.edu/conditions_scoli...arch-staff.asp

    It's a 2 year recovery...

    I had no choice....and it was totally worth it. My lumbar was wasted, and now it the least of my problems.

    Ask any questions. If you want to talk, send me a PM

    Ed

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  • LindaRacine
    replied
    Hi...

    I would absolutely not pay $5,000 for a brace. A $100-$200 LSO brace should provide the same lower back pain reduction. There are dozens of different braces available: https://www.google.com/search?q=lso+...AOoH2kjYBA9K5M

    I would also encourage you to find a new physical therapist. Before I had my first scoliosis surgeries, I tried physical therapy and it didn't help. When I started having low back pain again about 8 years after my first surgeries, I found a physical therapist who helped me a lot. Her approach was very different than all the previous PTs I had tried. If possible, find someone who specializes in spine and who has a doctorate degree.

    I hope that you find some relief one way or the other.

    Regards,
    Linda

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  • Mamichi
    replied
    By the way, my curves are T 38, L 55 ( more or less- I had them measured by different doctors and pts and there is some variation which is to be expected). The curve that has progressed is the lumbar curve, the thoracic has changed very little since adolescence.

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  • Mamichi
    replied
    Originally posted by LindaRacine View Post
    I personally would not choose to have surgery unless I felt very strongly that my pain was truly intolerable, or if my thoracic curve was so large that it was going to impinge on my heart and lungs. (That rarely happens in curves under 70 degrees.)

    As Pooka suggests, I would give PT an honest try before giving in to surgery. An honest try should almost certainly include 10-15 minutes of core strengthening exercises every day.

    --Linda
    I would not say that my pain is intolerable but it is exhausting and it is getting worse. I worry about the future. My surgeon says that waiting too long will make the recovery from surgery harder or even, if Iím too old, I might not be a good candidate for surgery. Iím 51. Ideally, he says, I should have surgery before I turn 60.

    Iíve been doing PT, it has not helped much. The chiropractor helped for a while. Iím trying Schroth now.

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  • Mamichi
    replied
    Originally posted by Pooka1 View Post
    The developers of the SpineCor brace eventually realized that they should be recommending exercise out of brace to avoid muscle atrophy. Maybe if you had a PT program that you did along with wearing the brace you could reduce your pain and avoid muscle atrophy.

    Do you intend to wear a brace the rest of your life? SpineCor tried to expand to the adult market and only recommended 2 years of wear for some random reason. There is actually no research behind that suggestion.

    By the way, PT alone is used for pain. If you have to do PT anyway with the brace, why not try just PT? It will probably be cheaper.

    May I ask what you have been told braces cost?

    In re surgeons and surgery, yes that is what they do but with adults, it is my understanding they exhaust all other modalities to address pain before agreeing to try surgery. One reason is surgery for pain is often not successful as far as I know. PT might have a better track record for pain in adults.

    In re scoliosis, as far as I know there is one consensus opinion... fuse (or staple or tether) T curves that are progressing past a certain point with growth remaining in kids. ALL other situations (with the possible exception of EOS)... kids with L curves, adults with any curves, there is no consensus on fusing because the evidence case is not there, especially in the case of fusing adults for pain. That is my understanding.
    .
    I would use this brace along with P/T. Schroth to be more specific. The schroth therapist recommends it to help with pain and posture to supplement the p/t. She says it is optional but some of her patients find it helpful. Why not just p/t? It is my understanding that the brace is an additional tool that brings fast pain relief. Iíve been going to a chiropractor for 2 years, regular p/t for 6 months and I started Schroth this week. So far nothing has helped much so Iím looking for options.

    Do I intend to wear it for the rest of my life? Not necessarily. I think Iíll end up having surgery so right now Iím hoping this buys me time and gives me a better quality of life until I have to get surgery.

    The brace costs 5k. Thatís why Iím trying to get as much information as I can before investing my money in something that is not beneficial.

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  • LindaRacine
    replied
    I personally would not choose to have surgery unless I felt very strongly that my pain was truly intolerable, or if my thoracic curve was so large that it was going to impinge on my heart and lungs. (That rarely happens in curves under 70 degrees.)

    As Pooka suggests, I would give PT an honest try before giving in to surgery. An honest try should almost certainly include 10-15 minutes of core strengthening exercises every day.

    --Linda

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  • Pooka1
    replied
    Originally posted by Mamichi View Post
    Good point. Thanks.

    I trust my surgeon but there is a part of me who also thinks that his professional interest is in surgery not bracing. He said that the problem with bracing adults is that they get addicted to the brace because it relieves their pain and then they stop working their muscles. I can see that happening. But if it is so effective in relieving pain, wouldnít this be a possible form of treatment if used in moderation?
    The developers of the SpineCor brace eventually realized that they should be recommending exercise out of brace to avoid muscle atrophy. Maybe if you had a PT program that you did along with wearing the brace you could reduce your pain and avoid muscle atrophy.

    Do you intend to wear a brace the rest of your life? SpineCor tried to expand to the adult market and only recommended 2 years of wear for some random reason. There is actually no research behind that suggestion.

    By the way, PT alone is used for pain. If you have to do PT anyway with the brace, why not try just PT? It will probably be cheaper.

    May I ask what you have been told braces cost?

    In re surgeons and surgery, yes that is what they do but with adults, it is my understanding they exhaust all other modalities to address pain before agreeing to try surgery. One reason is surgery for pain is often not successful as far as I know. PT might have a better track record for pain in adults.

    In re scoliosis, as far as I know there is one consensus opinion... fuse (or staple or tether) T curves that are progressing past a certain point with growth remaining in kids. ALL other situations (with the possible exception of EOS)... kids with L curves, adults with any curves, there is no consensus on fusing because the evidence case is not there, especially in the case of fusing adults for pain. That is my understanding.

    Linda can correct me if I am wrong.

    Leave a comment:

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