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Thread: Dr in New York, LA and other region.

  1. #1
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    Dr in New York, LA and other region.

    Okay so in reading this forum I have heard a lot of Dr. names mentioned but wasnt keeping a comprehensive list.

    Lenke - St. Louis
    Bentz -
    Hey-
    Cohen - Tampa
    ? -Dr. in Philly

    Top picks in New York and Southern CA.

    I know I can get a list from SRS and of course I will be reading Dr. websites too. Private message me if you'd rather: who and why.

    Thanks!
    Mom to son with new straight spine 8/15/2013 T16, L16
    Pre op T65, L?
    diagnosed 2/21/13 T55, L42

  2. #2
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    8 Leaders in Scoliosis Surgery to Know - Article

    Mom to son with new straight spine 8/15/2013 T16, L16
    Pre op T65, L?
    diagnosed 2/21/13 T55, L42

  3. #3
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    yes, many of those names are well known on forum...
    i did not know there is a foundation for minimally invasive
    spine surgery...but i flew to LA a few years ago and had a consult
    with Dr Anand as he has been a top proponent for minimally invasive
    surgery for spine, including lumbar spine, which is newer....
    he does not take my insurance...so i paid cash for the consult, as i
    did with Dr Boachie...
    there are other names that are not on the list of top surgeons...
    in NYC, Lonner and Neuwirth are two more to know of...
    i think the resources list on forum is the best place to go for names,
    as you can look them up geographically....

    jess

  4. #4
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    Quote Originally Posted by tampamom View Post
    Okay so in reading this forum I have heard a lot of Dr. names mentioned but wasnt keeping a comprehensive list.
    Lenke - St. Louis - I have heard Lenke only takes the worst cases. You would have to ask but I am guessing your son is not a worst case. Also the waiting time can approach a year because he is one of the best.

    Bentz - Randall Betz - world expect on stapling. Probably has seen more IIS/JIS cases than most others.

    Hey- Very clever surgeon in Raleigh, NC. He has my undying admiration for his sense on scoliosis (stitch in time saves nine, trying to save levels in the lumbar in young lids, inventing stuff, etc. etc. etc.)

    Cohen - Tampa - I have certainly heard his name around this sandbox.

    ? -Dr. in Philly - Samdani? Works with Betz.

    Top picks in New York and Southern CA. - Boachie, Lonner, Neuwirth as names bandied about here.

    San Diego - Peter Newton - pioneering tethering. I bet he has one million pubs. Same with Lenke.

    Many others.
    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. #5
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    Hi,

    Dr Ashgar is in Miami, Florida and trained under Dr Betz at Shriner's in Philadelphia. I have never met him personally but correspond with many families under his care. He is reputed to be extremely skilled and is beloved by patients and parents alike. That's who I would look for if I lived in Florida.

    Here are several links: http://www.mch.com/medicalServices/f...?doctorID=1501

    http://www.scoliosis.org/forum/showt...John-Asghar-MD
    Last edited by leahdragonfly; 02-27-2013 at 09:11 PM.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  6. #6
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    What jumped out at me was that while these guys (Boachie, Anand, Errico) who are certainly all top notch, may treat children, they do not specialize in kids, meaning that the majority of their practice may not be AIS/JIS. Some treat both adults and children. I am not saying that this is necessarily a bad thing, but often if the bulk of one's practice is not children, they may not be interested in learning about things like tethering, for example. For me, personally, I would want to see someone whose main focus is children. (I would also at least look into tethering if it was my child.)

    Just my two cents......best of luck!
    Last edited by mariaf; 02-28-2013 at 09:16 AM.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  7. #7
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    Birdwell in St. Louis and Mendelow in South Carolina references on this board?

    We are busy lining up 2&3 opinion doctor appointments for my son's surgery plans and found this story to be encouraging

    http://www.bridwell-spinal-deformity...-after-surgery

    I discovered Dr. Keith Birdwell from a friend of a friend (love facebook He was a patient of Dr. Birdwll, 8 yr PostOp male and is doing great. Granted he was fused in only the upper thoracic. This doctors website if very informative and from reading one case he did not even fuse a curved Lumbar, opting instead to give her more mobility!

    Thanks to Pook1, I am really working hard to make sure that initial recommendation to go to L3 is neccessary and not just "standard".

    http://www.bridwell-spinal-deformity...-after-surgery

    Just meet locally with a group of 5 moms all with Scolio teens close or about to go to surgery. It was so nice. And a Dr. Mendelow from South Carolina came up as a suggestion for another Dr. opinion....

    Oh, and Dr. Newton's nurse called to say my son is NOT a candidate for tethering given he is risser 4.
    Mom to son with new straight spine 8/15/2013 T16, L16
    Pre op T65, L?
    diagnosed 2/21/13 T55, L42

  8. #8
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    Quote Originally Posted by tampamom View Post
    Thanks to Pook1, I am really working hard to make sure that initial recommendation to go to L3 is necessary and not just "standard".
    Hey.

    I re-read your initial post and you said the fusion would go to L4, not L3. The reason why I became alarmed is because you said L4. As I understand Boachie's talk and what our surgeon said, that is very likely countdown territory. L3 is not so alarming but if you can stay above there that would be better. The higher the better when it comes to lumbar fusions unless going to pelvis right away... no countdown involved with that obviously.

    The other issue is understanding whether the lumbar is structural or compensatory and how the hypo-lordosis plays into all of this.
    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. #9
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    Yes, you are right Pook1, it is L4 that the doctor recommended Guess I am on overload a litte trying to keep this all straight. But I am going to have to hear that from more than one like you suggested. Here is a quote by Birdwell explaining how important it is to stop at L3, like you also pointed out.

    Dr. Bridwell and his team know that, if at all possible, itís better to fuse to L3 rather than L4 (the third lumbarówaistline level between the rib cage and pelvis óvertebrae rather than the fourth). Thatís because if thereís a fusion all the way to L4, the patient loses more mobility in the spine.

    Thanks for pointing all this out!
    Mom to son with new straight spine 8/15/2013 T16, L16
    Pre op T65, L?
    diagnosed 2/21/13 T55, L42

  10. #10
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    Tampamom,

    More info

    Here is a Dr Boachie interview..... Its mainly about adults but mentions what Sharon had been talking about in fusing to L4.


    http://www.hss.edu/professional-cond...l-stenosis.asp

    If you fuse a 13-year-old to L4, 20 to 25 years later, at the most, he or she is going to have problems at L4-5 and L5-S1 levels. So I tell them to take it easy a little bit, and avoid excessive high impact, rotational sports and activities, no other things that will cause early degeneration. But if you fuse them to L1 or T12, they can do very well for the rest of their lives, provided the remaining lumbar spine is properly aligned and has not shifted.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  11. #11
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    Ed,

    I was begining to think about long term issues for L4-5 by just browsing this board and seeing all the 2nd surgeries later in life! I could only deduce that it damages the last few vertebra eventually. kinda glad to see someone say it.

    So what do you make of Birdwell's case here http://www.bridwell-spinal-deformity...S-double-major ? The Xray's seem to show he stop short in the Lumbar area and the curve still straightened up? Luck?

    Thanks!

    -C
    Mom to son with new straight spine 8/15/2013 T16, L16
    Pre op T65, L?
    diagnosed 2/21/13 T55, L42

  12. #12
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    Quote Originally Posted by titaniumed View Post
    Tampamom,

    More info

    Here is a Dr Boachie interview..... Its mainly about adults but mentions what Sharon had been talking about in fusing to L4.


    http://www.hss.edu/professional-cond...l-stenosis.asp

    If you fuse a 13-year-old to L4, 20 to 25 years later, at the most, he or she is going to have problems at L4-5 and L5-S1 levels. So I tell them to take it easy a little bit, and avoid excessive high impact, rotational sports and activities, no other things that will cause early degeneration. But if you fuse them to L1 or T12, they can do very well for the rest of their lives, provided the remaining lumbar spine is properly aligned and has not shifted.

    Ed
    Thanks for posting that. Very dense!. I will have to study that.

    Sharon
    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."

  13. #13
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    Quote Originally Posted by tampamom View Post
    Ed,

    I was begining to think about long term issues for L4-5 by just browsing this board and seeing all the 2nd surgeries later in life! I could only deduce that it damages the last few vertebra eventually. kinda glad to see someone say it.

    So what do you make of Birdwell's case here http://www.bridwell-spinal-deformity...S-double-major ? The Xray's seem to show he stop short in the Lumbar area and the curve still straightened up? Luck?

    Thanks!

    -C
    First of all, you need to have some surgeon PROVE to you that the lumbar is structural as with bending films. If it isn't then all this business about how far to go into the lumbar may be moot. It may NOT be moot if there are other considerations like the hypo-lordosis... I have no idea. I'm just saying I would want to know if the lumbar was structural or not before I could go on to discuss treatment with any surgeon.

    Assuming the lumbar is structural...

    I would say based on the testimonials on this forum that many surgeons will stop at L3 on a kid per se unless the lumber is truly severe. I don't know what happens with these kids but maybe if the balance is perfect they can hold out a long time or forever before needing an extension. On that Bridwell case, he seems to be following suit about simply not going below L3 on a kid. Also, it seems like the apex of her lumbar curve was fairly high and if he was able to de-rotate the heck out of that, she might be stable for a long time. De-rotating seems to be mentioned a lot so I assume it is important in the long-term stability of these partially fused lumbar curves. That and perfect balance. Someone like Bridwell or Hey can hit the balance in all three planes and that seems to matter. My one kid seems to be perfectly balanced. The other kid is close to that. With their fusions ending at L1, they are thought to never need an extension in their lifetime though I am more hopeful of the perfectly balanced kid than of the other.

    I can only think of two cases here where a teenager was fused to L4 and one was done by Lenke so I assume that could not be avoided. That was a lumbar and also one of the most beautiful, artful corrections I have seen. Hopefully Lenke achieved perfect balance and complete de-rotation such that if she takes it easy, maybe she will never need an extension. The other was a double major.

    A third case would be the teenage boy where Dr. Hey stood on his head but still went to L4. I think that was in lieu of fusing a teenage boy to pelvis. Maybe if he is perfectly balanced he will get a few decades or more before that has to be extended. It beats being fused to pelvis right away though.

    I am not a surgeon so don't take anything I say as correct necessarily. Run everything by a surgeon.
    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."

  14. #14
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    Quote Originally Posted by tampamom View Post

    Luck?
    I wouldnít call it luck.....I donít like to use the word luck or lucky since there specific reasons why things happen.

    You need luck in rolling dice.....Like Robert Redford rolling the 7ís on the come out with a mil on the pass line. Thatís luck. Thatís also Hollywood. Scoliosis surgery is not a craps game, or shouldnít be. But it can be, with the wrong surgeon. Thatís why multiple opinions are good things. 2 surgeons really need to agree on procedure.....Its like counting beans in a jar. 2 wrong counts mean you have to do a re-count.

    When doing an initial scoliosis surgery, you need to start off right. You need an experienced surgeon. Dr Bridwell is one that falls into this category. There are also many other good scoliosis surgeons out there....

    You could e-mail his x-rays to Dr Pashman in LA. He does consults for a few hundred dollars I believe, and you donít have to fly there. He is also an excellent surgeon.
    http://www.cedars-sinai.edu/Bios---P...ashman-MD.aspx
    Great site with examples....
    http://www.espine.com/scoliosis-cases.htm

    Your son has a very flat spine in the sagittal plane. This is another factor in the equation that only an experienced scoliosis surgeon or surgeons can answer. Get a few opinions on this.

    Your doing a good job!

    Sharon, I knew you would like the HSS site. You can get lost in there for days.....

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  15. #15
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    Thank you everyone who is talking this through with me. Thank you Ed for the links, more reading. I can't tell you how many hours a day I spend reading, taking notes and emailing, so gald to have the option.

    In choosing a Dr for 2 or 3 opinions, Does it matter if they specialilze in Adult or Pediatrics Scolio surgeries. I think there would be pro and cons for us, given my son is risser 4, he is not a candiate for tetavehering or growing rods but not being an older adult he doeesn't have those other complications. ( well I still have much to learn about his Dx)

    Are there surgeons who focus on AIS primarily?

    I'd like to think my son is in a beneficial spot age wise for surgery, but my big question is finding someone who can help me understand/accept the L4 fuse. I want a Dr. who understands this concern and thinks out-side the box, to discuss and weigh the long term consequences for my teen. That makes me think a doctor treating adults might have more history and perspective on spine health 15 yrs later. Does anyone have an opinion on how I should proceed on this or who?

    I am reading up on Nathan Lebwohl, MD in Miami given he is listed in the top 1% nationally for his speciality, but I think his speciality is Adult Scolio....

    Thanks so much, this forum as been a tremendous help.
    Mom to son with new straight spine 8/15/2013 T16, L16
    Pre op T65, L?
    diagnosed 2/21/13 T55, L42

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