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Thread: What was the background of you Surgeon?

  1. #31
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    Quote Originally Posted by moonglow View Post
    Maybeck:
    I'm happy that you feel you have nice doctor's office staff. However I was talking about my own doctors, not yours. In my old health system, they were trained to say that they were sorry you were going through this. It was nice even the phone bank people said it. But now it's been a log time since anyone said that to me except the MRI girl was nice and one medical assistant of my pain doc is very nice. I would still like to be a medical assistant as I think you move around a lot and don't sit at a desk that much. This might be good work for those with Scoliosis surgery. If there are any medical assistants on this forum please let me know. Linda if you are spinal researcher do you write papers and stuff on Pubmed we can read it?
    Yes, though I've worked on dozens of papers, I'm only an author on one. Search Pubmed for proximal junctional kyphosis and racine.
    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

  2. #32
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    Quote Originally Posted by dixiesmommie View Post
    Oh yes and to you Linda, yes I believe patient's most certainly should have all the information necessary to make an informed decision, just not from someone who doesn't have a medical degree and is just researching along like the rest of us.
    So, when you encourage someone to have their implants removed, that's an opinion. And, when I post a study showing that some people have had their curves increase after they have their implants removed, that's medical advice?

    I have no idea why you dislike me so much, but nothing you say will change what I say. I may not have a medical degree but I know far more about scoliosis than you'll ever know. My advice to you is to get over it. If not, please stop addressing me altogether.

    My philosophy (and you'll see this in thousands of my posts) is to give patients all the information I can about their condition. I almost never ENCOURAGE anyone to have or not have a procedure. I never want to be in the position of encouraging someone to do something that turns out to be a bad decision.
    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

  3. #33
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    Quote Originally Posted by dixiesmommie View Post
    EYou and Linda were posting with such certainty that all people with hardware removal will revert back, but neither of you had hardware removal.
    Would you please point us all to the place where I said that all people with hardware removal will revert back?
    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

  4. #34
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    Hi Dixiesmomie

    Quote Originally Posted by dixiesmommie View Post
    I don't come here for medical advice such as the type you and Linda were posting. I come here for support and to share experiences. Such as : how do you manage to do this or is there a certain way you handle doing that? How was an outcome to a certain procedure and could you tell me your personal experience? I think it's fair to post what you have been through and why something perhaps bad happened to you. Those are the posts that are informative. For example If you have an instrumentation failure that's the type of thing we all need to know about. You and Linda were posting with such certainty that all people with hardware removal will revert back, but neither of you had hardware removal. .......... Oh yes and to you Linda, yes I believe patient's most certainly should have all the information necessary to make an informed decision, just not from someone who doesn't have a medical degree and is just researching along like the rest of us.
    Dixiesmommie: Here is how I approached my scoliosis surgery T-10-L4: I used the internet to find the best scoliosis surgeons in So Cal. Plus I had the benefit of my daughter who was in sales at Medtronics and had been in many operating rooms offering their wares and helping surgeons with those new pedicle screws and other hardware. I interviewed 5 surgeons all with great credentials. I took notes as to what each one said and looked into their background as much as I could. Then I found this FANTASTIC forum. It was so informative, reading others experiences, what could happen, got lots of information and most of all SUPPORT. The friends I made in '08 even got together and sent me a HUGE vase of flowers delivered to my front door just before surgery. I love the people in this forum.

    I need to tell you, in my not so humble opinion, that Linda Racine is a great and informative moderator who checks in and WORKS this forum about every day, along with her other life responsibilities, and she is truly a researcher. No, she's not a doctor, and no apparently she didn't have removal. Ed is the biggest cheerleader (even if he's a guy!) I know and is always upbeat and positive - no Debbie Downer. I'm defending them because they offer so much to this forum, truly care about people and have plenty of research, life experience, and forum review of posts, that they kindly post as "information".

    I'm offended that they are being attacked by you. If I could choose the best "bedside manner" it would be SusieBee. If I could choose the best positive, upbeat person, it would be Ed. If I could choose the most informed, it would be Linda Racine.

    After 7 years I now need a full PSO (all my hardware removed) and go thru a larger surgery than the one I had before. I will have hardware from T2 to the sacrum with iliac screws, an 11 hour surgery. Frankly I'm terrified about the life changes that involves so I returned to this forum for information, thoughts, advice (yes), and some moral support. These people didn't leave the forum after a few months after their surgeries (as I did, shame on me) and I intend to continue to participate in whatever way I can. Further the idea of iliac screw removal was something I wanted to read.

    Please understand that Linda and Ed aren't trying to "run the forum" or be "scoliosis surgeons" - they are simply caring people who have stayed and helped many. You also have stayed with the forum and I recall many posts from you while I was active in '08 that were helpful and informative.

    We are here to SUPPORT, SHARE INFORMATION AS WE KNOW IT, and console those who are emotionally fragile about these massive procedures. So to sum it all up - you of all people shouldn't be dissing Linda and Ed. They help. And to stir up arguments that they aren't informed enough for your taste, then just disregard their posts. It's like changing the TV channel if you don't like the show - and it messes with the good stuff here on this forum.

    Susan
    Susan
    XLIF/Posterior Surgery 6/16/08. Fused T10-L5 in CA by Dr. Michael Kropf (don't go there unless it's simple, I hear he's at Cedar's now). Very deformed, had revision w/5 PSO's, rods from T-3 to sacrum including iliac screws, all posterior, 5/23/16 with Dr. Purnendu Gupta of Chicago.


    Owner of Chachi the Chihuahua, So Cal born and bred, now a resident of 'Chicagoland' Illinois. Uh, dislike it here....thank God there was ONE excellent spine surgeon in this area.

  5. #35
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    I am confused as to this forum. I thought it was for patients run by patients, but now I'm told it is run by a spinal researcher? That's fine with me, and I understand that the researcher is also a patient, but please make that clear to us at the top border of the website or something. This will avoid confusion in future. I do not understand when the moderator says : "And are you joking when you say I am only here as a moderator?" I thought she WAS the moderator? I've seen lots come here for emotional support and get lots of UNASKED for opinions full of medical stuff from Linda moderator or Ed, who posts on the revision forum even though he does not need a revision? This is not how a patient forum is supposed to be! I think they are over-doing it. For the record, any thread is supposed to be about the person who started the thread and should offer them support. Many people have been intimidated by all the medical advice here and now feel they have to ask permission to take a pill or have a surgery. This is a shame.
    Last edited by moonglow; 08-01-2015 at 06:33 PM.

  6. #36
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    Hi. Because this area deals with adults who can do whatever they want and there are no innocent children involved, I actually don't have a strong opinion. But I just wanted to make a suggestion because certain issues are coming up here that are the same as on the parts of the forum dealing with kids and I can try to help clarify some things maybe. I think there are some misunderstandings brewing.

    I don't know how long you have been reading but Linda Racine is FAR AND AWAY the most knowledgeable person on this forum about scoliosis. This is in part from her own surgery and revision but mainly from her work in a research group of deformity surgeons. There are countless times when she has offered to ask a surgeon friend about advice for someone struggling on the forum. There are countless times I have said I hope Linda comments as she is the only person who has any chance of coming within a nautical mile of the answers to some questions here. In my opinion, having someone on the forum with experienced surgeons essentially in their pocket is PRICELESS. The value of that can't be overstated.

    Ti Ed is extremely intelligent, has been through a lot, and is capable of processing technical information. I think that last thing is something that is generally missing through no fault of the people who can't do it. Not everyone has this training. I sometimes fear for people who can't process technical information or who actively are at war with science. They are at a disadvantage when faced with a serious medical problem. People don't know what they don't know and get scared. I think people see this fear and try to help. But the people most scared seem to be least open to help. It isn't their fault but it seems to be the case. Science is the candle in this darkness but not everyone accepts that.

    I think you have a point if you don't want any opinion other than the ones from your surgeons that you have talked to in person. You are an adult and that is a legitimate decision to wall off all other information.

    Also, your feelings are always correct. Nobody should ever tell you how to feel.

    Last, if anyone is making medical decisions against their surgeon's advice on the basis of a forum post them they shouldn't be on the forum in my opinion. That is not rational and they have bigger problems.

    I'm sorry if this doesn't move the ball down the field but I wanted to at least try.

    Good luck.
    Last edited by Pooka1; 08-01-2015 at 10:07 PM.
    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. #37
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    Quote Originally Posted by moonglow View Post
    I am confused as to this forum. I thought it was for patients run by patients, but now I'm told it is run by a spinal researcher? That's fine with me, and I understand that the researcher is also a patient, but please make that clear to us at the top border of the website or something. This will avoid confusion in future. I do not understand when the moderator says : "And are you joking when you say I am only here as a moderator?" I thought she WAS the moderator? I've seen lots come here for emotional support and get lots of UNASKED for opinions full of medical stuff from Linda moderator or Ed, who posts on the revision forum even though he does not need a revision? This is not how a patient forum is supposed to be! I think they are over-doing it. For the record, any thread is supposed to be about the person who started the thread and should offer them support. Many people have been intimidated by all the medical advice here and now feel they have to ask permission to take a pill or have a surgery. This is a shame.
    I was asked to moderate this forum by the National Scoliosis Foundation because of the thousands of hours I spent helping people on a previous listserv. I am not paid to do this, nor have I ever been paid, and I do not have any relationship to anyone who is paid by the National Scoliosis Foundation. And, I actually became a researcher after I started moderating here.

    Your hatred of me is quite clear and I think is probably causing you to be blind to the truth. If you read my thousands of posts, you'll see that I almost never offer advice. When I respond to a question, I respond with the information I know because of the research I've done. You might want to pick any random thread, and look at all the people who encourage someone to have one treatment or the other. It's funny that you only single out Ed and I. I only encourage people when they specifically ask for encouragement. Quoting published research is not encouragement, although it can be used that way. It is giving someone all the information they need to make an informed decision. Pick almost any thread here and you'll find someone encouraging other people to have this treatment or that treatment, to use this professional or not that professional. You're apparently confusing those other people with Ed and myself.

    By the way, no one with any authority in this forum EVER said that this forum was strictly for support. That comes from your imagination. Actually, the original idea was to make this a place where patients could get correct information and to make sure that a bunch of misinformation was NOT disseminated. I'm glad that people support one another here, but that's not the main goal. There are plenty of other forums around the internet meant only for support. If you only want positive support for everything you do, you'll be much happier elsewhere.
    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

  8. #38
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    Quote Originally Posted by dixiesmommie View Post
    You specifically told me after hardware removal microscopic changes occur. according to an MD that is not always the case. That is not correct or accurate information. The MD said " that was like telling a cancer patient who just finished chemo that their cancer will return". Linda you also asked a girl for her ex rays so you could determine her problem. I swore I as done communicating with you on this thread, but I see you consistently doing this sort of thing. people have written to me all day about your comment about how I don't know as much as you and never will. you have no idea what I know or who I know, so please take a professional stance and moderate in an appropriate manner. I do not dislike you, grow up and be professional!
    So, only MDs can read a radiograph?

    Please reread m posts that you mentioned above (but did not quote). I never said that bone always progresses microscopically after implant removal. What I stated (see below) came from David Bradford, MD, who is just as much an MD as your surgeon. And, by the way, where's your research that shows that curves don't progress after implant removal?

    Stop making it up as you go along, and stop the attacks. I'm happy to stop responding, but am not just going to sit here while you make stuff up about me.

    Quote Originally Posted by LindaRacine View Post
    Hi....

    If you're solidly fused (and there's no way to know that for certain), removing all of the implants shouldn't have any immediate effect. If any part of the fusion isn't solid, you'd probably know within a month or two. Even if you are solidly fused, removing the implants may (will?) lead to a very gradual recurving of the spine.
    Quote Originally Posted by LindaRacine View Post
    No, the thought is that there are a large number of microscopic breakdowns. The progression will be anything but fast (unless there are areas of non-union), but it will be steady.
    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

  9. #39
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    Quote Originally Posted by LindaRacine View Post
    So, only MDs can read a radiograph?
    Good point.

    Chiros read radiographs. Given that, anyone can read them FULL STOP.
    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."

  10. #40
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    Quote Originally Posted by dixiesmommie View Post
    Linda, I have searched all over the site and can not find the option to deactivate my account, is there an obvious way to do it? You have made this such a hostile environment For so many of us who are suffering and looking for support. The only option I can find is to email Mr.OBrien. Is that how we deactivate our account through him?
    Why can't you just stop reading and posting? What is the point of deactivating the account?

    Just curious.
    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."

  11. #41
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    I do not want to get into this discussion but I want to support both Linda and Ed. They have been both such wealth of information and knowledge for me at many times times since 2010 that I do not know what I would have done without them.
    Melissa

    Fused from C2 - sacrum 7/2011

    April 21, 2020- another broken rod surgery

  12. #42
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    Quote Originally Posted by Pooka1 View Post
    Why can't you just stop reading and posting? What is the point of deactivating the account?

    Just curious.
    Good point, Sharon. I was thinking the same...Sadly, this forum turned into Real Housewives of NJ show. Enough drama already.
    Last edited by Irina; 08-02-2015 at 12:28 PM.
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  13. #43
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    I for one have benefited enormously from this forum. I have only ever received the most helpful advice and appreciate especially, both Linda and Ed for their input and efforts over the years. I don't understand the complaints at all. None of us is forced to do anything suggested here, it's up to us, as adults to decide. Loads of people love this forum for the advice and support it offers. Thank you Linda and Ed and the many others who helped me get through my surgery and recovery.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  14. #44
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    I am not a patient but only a parent of two patients. I know shear fear can get in the way of the pursuit of high quality information and reasoned discourse. I think some parents who are otherwise rational nevertheless have been driven completely around the bend by their child's diagnosis. I just want to throw something out there for what it is worth...

    Despite my best efforts to take in information from the surgeon about my daughters, and despite being an experienced scientific researcher (albeit in a completely different field), I can say that I can barely follow what is being said most of the time. I am always exquisitely aware that this is not my field and I have not mastered this in any sense. Then there are the arm-chair biochemists who are not contributing much but just confusing other lay people. I can usually spot those because they are banging up against general science which I can comment on. Also, these posts seem like they have parachuted down from Neptune... no relation to anything being said. The criticism of Linda and Ti Ed also fall in this category. The fact case is the fact case and while no emotion is wrong, emotions can cloud the fact case.

    Most eye-opening for me was hearing the plain English of the surgeon, concluding it must mean something, and then later learning it means something totally different.

    What has been most valuable for me about the forum is a check on what I think I heard and what I think I know. In many cases, my conclusion was wrong. When posted material here seems to conflict with what people think they understand from their surgeon, I think folks might consider NOT that their surgeon is wrong but they they misunderstood their surgeon or the post. Had they understood the surgeon correctly, and had they understood the posts here correctly, maybe there is no disagreement at all.

    Scoliosis treatments are complex and the chances of untrained people getting everything right the first time are low in my opinion. Reminding myself of that has been the clearest way forward in my journey to help my kids.

    Just my opinion.
    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."

  15. #45
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    Should this be a new thread?
    Melissa

    Fused from C2 - sacrum 7/2011

    April 21, 2020- another broken rod surgery

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