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

  1. #31
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    I agree, Jess. Dr. Lenke is one of a handful of doctors whose name has come up again and again over the years as one of the truly brilliant scoliosis surgeons in the country.
    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/

  2. #32
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    so true, Maria
    too bad we can't clone him and put a Dr Lenke in every state
    where patients need surgery!
    not to say we don't have great scoli surgeons in NYC, because we do...
    it would just be nice if we had a few more of Dr Lenke to go around!

    jess...and Sparky

  3. #33
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    Dr. Hey blogged about your son!!!

    Great news! The lumbar is not structural!

    Well, I've been back to work for a little over a week now, and things have been quite busy as usual. I've seen several out of state adolescent scoliosis patients in for consultation -- the most recent was a nice 14 you young man and his dad who flew up from Tampa, FL area to see me. He's got a 54 degree thoracic curve, and on forward bend had a lumbar hump, but on bending X-Rays that I got today showed them that the lumbar curve straightened out completely. This was awesome news to the mom Cecilia when I did an internet X-Ray review for her, since she had been told that her son needed both the thoracic and lumbar curve corrected -- a bigger deal especially for her son who is avid tennis player.
    http://drlloydhey.blogspot.com/2013/...e-surgeon.html
    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."

  4. #34
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    Yep! My son and hubby met with Dr. Hey on Tuesday, what an impressive doctor and staff!!! Thank you so much Pooka1 for bringing him to our attention. He is everything you'd want your surgeon to be: brilliant, approachable, passionate, and trustworthy.

    Dr. Hey did bending Xray's which revealed a straight lumbar, only slightly rotated!!!!! I wept tears of joy with this news

    They also had another consult today with Dr. Lenke in St. Louis and he too agreed that the Lumbar should be saved. Pointing out there are no guarantee's, it just seems like the best choice for our teen. Lenke said he would not do our son's surgery since it wasn't serve enough I guess and referred us to a local Doctor, Cronen, who apprenticed under him, so we have that consult 4/17th.

    This is all very good news for us, what a relief. I feels like everything is going to be okay. Not easy, but doable.

    I am just so thankful for everyone on this forum who has reached out and helped me sort through this. Really just participating in forum helps. I've gone back and read so many posts from years ago, it has been a great resource.

    Regards,

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

  5. #35
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    Hey C,

    It is such great news. I just don't understand why any surgeon would fuse the lumbar on a child without determining whether it is structural or not. There is some long term data on fusing only the structural portion of a false double and it is all good. Maybe the key is to achieve perfect balance and the surgeons who fuse the lumbar didn't achieve that on some patients and had to go back in. Who knows. I think I have seen at least one study where they did not fuse the structural lumbar in a double major in kids I think and that was not heinous, at least in the short term. If that is correct then no lumbar in a false double (compensatory lumbar) should ever be fused as far as I can tell.

    I never met him but Dr. Hey seems like one of those high performance individuals you see every now and then. He's just talented and driven. That the combination you need. Maybe most orthopedic surgeons are like that... I would not be surprised. If either of my kids ever needed a revision, I would get an opinion from Dr. Hey.
    Last edited by Pooka1; 03-28-2013 at 08:58 AM. Reason: double major, not false double
    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."

  6. #36
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    By the way, would you feel comfortable stated who the surgeon was who did not think it necessary to determine if the lumbar was structural or compensatory on a child? He wanted to fuse to L4 would would likely have meant a fusion to pelvis at some point.

    I think that would be very valuable for future parents coming on this forum. If I was the forum owner, I would make it a sticky thread so it stayed near the top. This would be just the flat fact that this surgeon did not do bending films and was going to L4 on what turned out to be a compensatory lumbar curve on a child.
    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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    What great news! I am so happy that you sought out extra opinions! You must be so relieved. Even though this isn't easy it will be better to have peace of mind knowing you are doing the right thing for your child. Thanks for the update and best of luck!

  8. #38
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    Quote Originally Posted by leahdragonfly View Post
    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

    Dr asghar is amazing! He's my surgeon. His goal is not to make his patients back straight, but to help them keep their flexibility as much as possible in order to have a normal life. He said if I went to a Shriner I would have been fused from T2-L3, but he fused me from T4-L1. Since he was trained under Dr. Betz, he will go to Shriners philidelphea to operate if patient has finacial issues or lives in the area. He also says that as long as he's alive he will take are of his patients, even if They were operated by him 30 years ago he would still see them (even of they're an adult) because only he knows what he did to them. He's a clever, smart, hilarious, caring surgeon over all.
    Last edited by Kat3573; 03-28-2013 at 12:01 PM.

  9. #39
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    Quote Originally Posted by Pooka1 View Post
    By the way, would you feel comfortable stated who the surgeon was who did not think it necessary to determine if the lumbar was structural or compensatory on a child? He wanted to fuse to L4 would would likely have meant a fusion to pelvis at some point.

    I think that would be very valuable for future parents coming on this forum. If I was the forum owner, I would make it a sticky thread so it stayed near the top. This would be just the flat fact that this surgeon did not do bending films and was going to L4 on what turned out to be a compensatory lumbar curve on a child.
    I agree that would be a great idea.

    While I understand if Mom isn't comfortable sharing this information, it would as you say be very valuable for new parents coming on to this forum. I know that I sure would want to be aware of this if I was looking for a surgeon for my child.
    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/

  10. #40
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    I agree, Maria, that I would understand why she would not want to name the surgeon despite this being just a fact. I wonder if he would even mind... fusing the lumbar on false doubles in teenagers is just the way he rolls apparently.
    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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    Dr. Lebwohl was my second opinion. He focuses more on adults than children. He is a good surgeon and very knowledgable. I would ask him that question if you see him. My my ask what does he thinks about Dr. Asghar(I feel like I'm bringing him up too often) and he said that he thinks Dr. Asghar is a good surgeon and would agree for me to be operated by him, but if I wasn't operated by my surgeon, dr shufflebargar or dr lebwohl would be my second choice. But i would be a little concern if he doesnt just focus on scoliosis in children. Without a doubt, dr lebwohl is a great sugeon to see and i would highly value his opinion. Ive only seen dr asghar and doctor lebwohl, so I dont know much of the other surgeons.

  12. #42
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    Dr shufflebargar is also fantastic! He's been operating for over 40 years! He was my teachers second opinion 30 years ago! My friend was operated by him on November 2011. I would definitely see him. Here's a video of one of his patients: http://m.youtube.com/index?&desktop_...?v=baQL9mVo7ZY

    If the link doesn't work just look up on YouTube: MCH Ashely scoliosis.

  13. #43
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    Thank you everyone for sharing their doctor opinions. Now in regards to our initial consult, Dr. Neustadt is who we saw first. I was in such a state of shock to hear surgery I don't remember much, so I called his office back to get the information again and the nurse read me the cobb angles and fusion level: T55, L42 fusion from T5 - L4.

    After a week of heavy research, mainly on this forum, I called back again to asked his nurse why didn't he do bending Xrays to determine if the lumbar was structural or not because I was very concerned about fusing to L4 for my teen. She put me on hold to double check his notes, then said they don't do bending Xrays until just before surgery and that L42 was a big curve, we'd want to fusion it, could't leave it alone!

    So maybe this doctor's plan is to give you a worse case scenario, then do bending Xrays just before surgery and if you are lucky he doesn't have to go that far. Or maybe he just fuses that far to be safe from extension surgery! It is hard to say since we haven't had years of appointments to build a relationship of trust.

    Can't say it too much... so glad for this forum to guide me. Thanks you guys!
    Mom to son with new straight spine 8/15/2013 T16, L16
    Pre op T65, L?
    diagnosed 2/21/13 T55, L42

  14. #44
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    Thank you for calling and checking. That was important to do.

    Telling patients he intends to go to L4 on a kid, and NOT telling them this translates to a pretty good chance of eventual fusion to pelvis (per Boachie), and letting the patient and parents stew about that until possibly the day before surgery, is not the kind of surgeon I would ever employ FULL STOP. We don't even know if he wouldn't still go to L4 even if he determined the lumbar was compensatory. This is a textbook example of why more than one opinion is vital. It is also a potential example of someone who CAN'T hit the balance reliably and so has to go to L4 on a false double. 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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    Quote Originally Posted by tampamom View Post
    She put me on hold to double check his notes, then said they don't do bending Xrays until just before surgery and that L42 was a big curve, we'd want to fusion it, could't leave it alone!
    Here's some data... One-Of-Two and Two-Of-Two (i.e., my identical twins)...

    Kid #1: Two days before surgery, T58*, L34*. The L34* bent out to L8*. The T curve only bent out to T23* because it was structural. On her last radiograph before being released, there was no measurement given of the L curve because it was too close to 0*. And as for the T curve, the radiologist wrote, "No residual scoliosis of the thoracic spine." This is an example of a hyper-correction which is a bit controversial at least at one point as far as I can tell. Not sure if it is still controversial.

    Kid #2: About six weeks before surgery, T57*, L38*. The L38* bent out to L4*(!) - STRAIGHT. I was coaching her to give it her all she had so as to try to level L1 which she did and therefore kept the fusion ending at L1. The T curve only bent out to T31* because it was structural. Eight months after surgery, T20* and L25*. This stabilized after the first year or so to pretty much match the fused T curve Cobb of 20*. She had a false double and so has a residual small scoliosis in both curves as the best option to handling this surgically apparently. If I recall correctly, hyper-correcting a false double often results in decompensation to the left so they don't do it. There may be other reasons.

    So the point is Kid #2 with the false double had a 38* lumbar which is within the noise as against your son's 42*L. She was fused in October of 2009, was stable on her final radiograph, and was released. These lumbars in false doubles appear to come to match whatever the T curve correction is. They also appear to come to match in the pure thoracic curves... the first kid's Lumbar went from 34* to "no measurement" just because the T curve was fused at "no residual scoliosis of the thoracic spine".
    Last edited by Pooka1; 03-30-2013 at 08:57 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."

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