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Thread: NYC Docs?

  1. #1
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    Sep 2004
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    Question NYC Docs?

    I am looking for the very best doctors to talk to about surgery for my daughter. We have talked to the local Baltimore docs, and are not particularly impressed. Please let us know if you have heard of the very best docs in NYC, or have had personal experience with them. thanks and best regards,

    Grace's mom & dad

  2. #2
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    Apr 2004
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    new jersey
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    Hi ,
    I had my surgery 2 1/2 months ago with Dr. Micheal Nuewirth...I came thru with flying colors...He also did Gloria estafans back when she had an accident,,but he ids also a leader in scoli fusion surgery..there are many in NYC...research and you will find plenty....
    CONNIE


    Surgery June 28th 2004
    fused T4 -L3
    Hip graft
    Grown 1 1/2 inches
    25/o upper T 15/o
    53/o T 15/o
    37/o L 6/o
    Dr. Micheal Nuewirth
    New York City

    August 6, 2004
    Pulmonary Embolism
    complication from surgery

    January 2007 currently
    increasing pain at the T4/5
    point irratation heardwear

  3. #3
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    nyc docs

    i am using a dr. for my daughter his name is dr. boachie he is with hospital for special surgery. I know someone who recently flew in from georgia to have him do their daughters surgery. He is one of the top surgeons.

  4. #4
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    Thanks JC3. We really appreciate the response. Dr. Boachie is a name I have heard several times, and definitely one who's at the top of our list. We wish you the VERY best with your daughter. How old is she,a and what type of curve? Thanks!!!!

  5. #5
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    nyc docs

    hi susannajon
    my daughter is 14, just started high school and her curve is 52 degrees with pretty severe rib rotation. Dr. Boachie will also be removing rib for her rib hump, which i am a bit nervous about. I wish she didn't have to have that done too. I researched so many drs and boachie was our second opionion and we felt confident going with him and booked the date for surgery the day we met him and didn't look further. The office staff were so nice and really tried to make my daughter feel confortable. I have heard excellent things about dr. neuwirth too as Connie posted here and he was going to be our next opinion, but we were happy with boachie and heard good things about him. How old is your daughter and what is her curve?
    jennifer
    Last edited by jc3; 09-09-2004 at 09:12 AM.

  6. #6
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    Hi Jennifer,

    Thanks for your message. Our daughter is 12, and will be 13 this month. She's in 7th grade. She has an "S" curve, 67 degrees lumbar 34 degrees thorasic. No one has mentioned rib rotation, so I will try not to think about THAT until I have to. It's bad enough thinking about her having any operation! I have heard nothing but raves about Dr. Boachie.

    Ok, I'm going to ask a favor... have you heard of Patrick O'Leary, Darryl Antonacci, Michael G. Vitale, or Roger Widmann?

    Did you look outside of NYC (Randall Betz or Todd Albert ih Philly)?

    Thanks so much for your feedback. Let me know the names you were given, and anything you've heard about the doctors I mentioned.

    Thanks!

  7. #7
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    nyc docs

    hi susanajon

    i have heard of patrick o'leary and the michael vitale. I have definitly heard of patrick o'leary more than the other one, but personally boachie or neuwirth are the two that i heard are the very best. I have also heard of dr. Betz, he is with schneider's children's hospital in phili and i have heard good things about him, someone on one of these boards their daughter had vertabre stapleing done by him and i don't think too many drs. do that.
    anymore questions let me know. I know what you're going through. It is such a hard decision to make.

    jennifer
    what dr. have you been using up until this point??

  8. #8
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    Forgive me if this message is repeated. My PC just did something strange and I'm not sure if my last message posted or not... Anyhow, we've seen Paul Sponseller, Chief of Pediatric Orthopedics at Johns Hopkins. We have also seen Paul McAfee at St. Joseph's and Vicki Kalen at University of Maryland. Have you heard of any of these guys?

    We were also thinking about seeing William Lauerman at Georgetown, as he's supposed to be the top doc in the DC area.

    They all have a good reputation locally, but I am unwilling to settle for anything less than the very best for our daughter. I'm sure you know exactly where I'm coming from! Anyhow, thanks again for your feedback.

    Susanna

  9. #9
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    nyc docs

    hi susanjon,
    sorry i haven't heard of any of them. I totally understand where you are coming from and wanting to go with the "best". I felt the same way not wanting to settle for anything but the best. Good luck with your search, i'm sure you will make the right decision.

    jennifer

    how does your daughter feel about having the surgery? Did she wear a brace before this?

  10. #10
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    Jennifer,

    The doctors told us that if we braced 23 hours a day, there was an 85-95% chance she would progress and still need surgery. 90-100% chance without bracing. Our daughter is totally tactile, and the thought of making her wear a brace was out of the question. She would have been miserable. We opted for a non-surgical exercise/strength training study (Dr. Vert Mooney). The preliminary study had a very high success ratio with 19 out of 20 the curve was stopped or corrected. One child progressed and needed surgery. Unfortunately, our daughter was the exception. Good news is she is strong and healthy and in less pain having participated in the study.

    We have been talking about the likelihood of surgery since our first visit with Hopkins, so she is pretty much resigned to the reality. She's looking forward to being taller than me! She scared about the pain and the scar. She was hoping she would be a candidate for the minimally invasive technique, but from what I've read, it's not likely with an "S" curve and the lumbar curve pretty pronounced.

    What did you guys try before resorting to surgery?

    Susanna

  11. #11
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    nyc docs

    hi susannajon
    my daughter was diagnosed about two and a half years ago and her curve was only 24 degrees at the time. They told us that she needed a brace and she had to wear it for 23 hours a day. She refused to wear it, finally she gave in to wearing it just to sleep in, but obviously it was not enough. Each appointment it got worse and worse and here we are now 2 years later with a surgery date. I am very nervous about the surgery and just want everything to go all right and want this scoliosis to be over with already and let her get on with her life. She is very negative about having the surgery, but we finally came to the realization (my husband and I) that it has to be done and maybe one day she will thank us.
    It's too bad that the study program she did, did not work out. It is a tough decision to make doing this surgery.
    keep in touch and let me know who you end up seeing.
    jennifer

  12. #12
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    Our daughter is scared, but she wants to have a straight back. We believe that as a 13 year old, she should have some degree of control over what happens to her. We talked about bracing when she was first diagnosed. Our doctor was very honest with us about the likelihood of it helping. We sat down with her, and discussed the options. At the time, we all agreed that the strength training study seemed like the best opportunity. She told me she didn't want to wear the brace, and because the chance it would help her was so slim, we didn't seriously consider forcing the issue.
    As far as surgery, we started talking about it right after the first x-ray. We always let her know it was her decision. She was undecided until recently. This summer, she was getting out of breath when she ran or climbed, and her back has been aching quite a bit. We also met a lady with advanced scoliosis. The woman was terribly deformed, and crippled with pain. It really upset our daughter. She said to me, "Mom, please don't let that happen to me!" I promised her we would find the best doctor. It is, however, very much her decision to have the surgery.

    Maybe it makes sense to see a family therapist, and let your daughter talk out the situation. I would bet that if given the freedom to make a choice, she would choose surgery. I am sure she doesn't want to look different, or be disabled when she gets older. It's just that stubborn teenaged thing, and probably her disire to have some control of her destiny.

    It's tough being the parent of a teenager, isn't it!!! Best of luck to you, and I'll let you know what we decide as far as a surgeon.

  13. #13
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    hi susannajon

    your daughter sounds like a smart girl. I couldn't leave the decision up to my daughter because she would probably say no she doesn't want to have the surgery and we know that she has to have it. Not only is the curve noticeable, but one of her ribs sticks out and when she is wearing certain shirts it is very noticable and we cannot let her go on looking like that. Maybe now it doesn't bother her because she is only 14, but later on i'm sure it would and would only get worse and she would end up being very deformed i'm sure. The worst part is that she is in no pain and has no trouble breathing, so she doesn't see the need for the surgery. I have thought about taking her to a therapist because she has such a negative attitude about the whole thing. Yes, it is tough being a parent of a teenager!
    thanks for writing, it is so great that they have these boards so parents can talk to others going through the same thing. It really helps.
    talk to you soon
    jennifer

  14. #14
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    Jennifer, Thanks again for your advice and support. Talk to you soon, and best of luck with your daughter.
    Susanna

  15. #15
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    Jul 2004
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    Northern California
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    John Hopkins Hospital

    Hi Susanna, Sounds like you are really doing your research--courage to you, it will all pay off.

    Two things: first, when you see Boachie, can you let us know how it goes? I am trying to find out opinions about him, and have an appointment to see him myself at the end of the month.

    Second, depending on your outcomes, you might also think about Philly. The Children's Hospital there is really good.

    Good luck! Grace is lucky to have you guys. ~~

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