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Thread: Revision Surgery/ Doc info NYC area/ Anyone fused to sacrum?

  1. #1
    Join Date
    Oct 2009
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    Revision Surgery/ Doc info NYC area/ Anyone fused to sacrum?

    Hi everyone. Need some advice... I am fused with a Harrington Rod from T-6 to L-4 (1985, Dr. Keim). I've had pain for the last 20 years or so but lately it's gotten worse. I'm now 39 and have an 8 month old baby who is growing like a weed which doesn't help the situation. I saw a Dr. in Westchester today who I was not so fond of. I know I need revision surgery but I can't accept it yet. I also know that I will need an osteotomy and need to be fused to the sacrum which scares the cr*p out of me. Wondering if anyone can recommend a few good docs in the NYC area. (I saw a few a while back: Cammissa, Neuwirth and others.) Never saw Boachie b/c he doesn't work w/ insurance companies. If you know any others, please let me know. Also, if anyone has had experience with an osteotomy and being fused to the sacrum, I'd love to hear your feedback. Thanks so much,
    Jody

  2. #2
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    May 2009
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    recommend Dr Lonner, and Dr Neuwirth, both in Manhattan...
    i see that you already went to Neuwirth...
    so also recommend Dr Errico

    sending you a private message...
    best of luck
    jess

  3. #3
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    Jan 2011
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    197
    Jody, I'm having surgery a month from today with Dr Grauer at Yale. I don't know if New Haven is too far from you, but we have researched him fifteen ways from Sunday, spoken with other patients of his, etc. and he has been described as "incredibly anal retentive" and "meticulous". I like his bedside manner which says A LOT about a surgeon.

    Just adding another option. Best of luck and I'm really sorry you're going through this. That is a frightening prospect, to the sacrum - I'm hoping to avoid that by going through my surgery now. Hugs to you.
    Female, age 38
    4 years of bracing, concluded at 42*upper/38*lower
    currently 64*upper/40*lower
    Fused T3-L4 on Feb 23 2011
    now 32*upper/18* lower

  4. #4
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    I used Boachie

    I sent a private message. Dr. Boachie does take out-of-network benefits. It depends on your insurance.
    Neuwirth is getting up there in age. I've hear excellent things about Lonner and Errico.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  5. #5
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    Mar 2005
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    NJ across from NYC
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    Jody - I just had revision surgery on December 7, 2010 with Dr. Boachie from L3 to sacrum. My original surgery was in 1981 with Dr. Keim and I too have the Harrington Rod from T4 to L3. I am ten weeks post-surgery and feel great. I was crippled with pain prior and have been in Dr. Boachie's care since 2002. I was scared as well and when he said in 2008 I needed the revision, I couldn't commit until last summer. I could not take the pain anymore. I feel like a different person. Life is so much better. Any questions, please don't hesitate to ask. Dr. Errico is also a highly recommended revision surgeon in NYC. Good luck, LYNN
    1981 Surgery with Harrington Rod; fused from T2 to L3 - Dr.Keim (at 26 years old)
    2000 Partial Rod Removal
    2001 Right Scapular Resection
    12/07/2010 Surgical stabilization L3 through sacrum with revision harrington rod instrumentation, interbody fusion and pre-sacral fusion L5-S1 - Dr. Boachie (at 56 years old)
    06/11/14 - Posterior cervical fusion C3 - T3 (Mountaineer System) due to severely arthritic joints - Dr. Patrick O'Leary (at age 59)

  6. #6
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    Dec 2008
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    Huxley, Iowa
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    I am fused to the sacrum, and also had osteotomies. Granted, I am probably the last person that you would want to have reply to your thread with their experience. But, if I can help with any questions I'd be happy to
    25 years old
    double 70+ degree curves before surgery
    Anterior on 11/11/08
    Posterior on 12/2/08 with titanium rods
    nearly perfect correction
    fused t-10 to pelvis
    with a hemi-vertebral osteotomy at L4

    Broke right rod at L4-L5 on 06/26/09
    Broke left rod on 10/24/09
    Revision surgery on 11/5/09 with vitallium rods
    Broke both rods again

    Had posterior than anterior revisions on 03/11 at the Twin Cities Spine Center
    Declared "FUSED" on 12/6/11

  7. #7
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    Oct 2009
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    Thanks everyone. I really appreciate your input!

  8. #8
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    Oct 2009
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    Wow. Just spoke to the woman at Dr. Boachie's office who was quite nasty! Their first opening is end of March. When I expressed some hesitancy, she gave me the names of 2 other Dr/s who I never heard of (Cunningham and Rawlins) and told me she would not make an appt for me until I saw them. I said, ok never mind. I just want to talk to my husband. Can we just go ahead and make the appt and she said No. I will not give you an appt until you speak with your family. WTH? Is she kidding? How is she going to know if/when I speak to them. Really turned off right now. (Sigh).

  9. #9
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    Nov 2010
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    Quote Originally Posted by jowilly View Post
    Wow. Just spoke to the woman at Dr. Boachie's office who was quite nasty! Their first opening is end of March. When I expressed some hesitancy, she gave me the names of 2 other Dr/s who I never heard of (Cunningham and Rawlins) and told me she would not make an appt for me until I saw them. I said, ok never mind. I just want to talk to my husband. Can we just go ahead and make the appt and she said No. I will not give you an appt until you speak with your family. WTH? Is she kidding? How is she going to know if/when I speak to them. Really turned off right now. (Sigh).
    I'd be pretty pissed off too if I were treated like that. Maybe the receptionist is pm'essing or maybe she's on a power trip. I don't know. I do know that I could no longer stand the voice of the receptionist at BC Children's so I made my husband call on a regular basis b/c I felt as though I'd lose it all and blast her but was afraid to do so in case she slipped our son's file to the bottom of the pile and he'd never be seen by anyone. Pffft, turns out he never was seen by anyone anyway there so now I'm wishing I'd given her a piece of my mind after all. They're JUST receptionists, not specialists, not even doctors and probably not nurses. Why the attitude!? Makes me so mad.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  10. #10
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    Jan 2008
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    NC
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    Quote Originally Posted by jowilly View Post
    Wow. Just spoke to the woman at Dr. Boachie's office who was quite nasty! Their first opening is end of March. When I expressed some hesitancy, she gave me the names of 2 other Dr/s who I never heard of (Cunningham and Rawlins) and told me she would not make an appt for me until I saw them. I said, ok never mind. I just want to talk to my husband. Can we just go ahead and make the appt and she said No. I will not give you an appt until you speak with your family. WTH? Is she kidding? How is she going to know if/when I speak to them. Really turned off right now. (Sigh).
    That's pretty good. I don't think I've heard a more absurd exchange recounted on here. It's like a Monty Python skit!

    Sorry you had to deal with that.
    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. #11
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    May 2009
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    hi Jody
    i know Boachie is one of the best..but there ARE others!

    Lonner is doing minimally invasive lumbar...i am not saying you are a candidate for that, as i am not a doctor....
    BUT...he is open, compassionate, excellent surgeon, and always looking for up and coming methods....if you search forum with his name, you will find many who sing his praises....
    i saw Dr Neuwirth 2 years ago...i didn't feel he was too old to do hours of surgery...that is just my opinion...
    and Dr Errico is excellent....his office is usually packed!

    i don't think it is good for patients to view one doctor as the be all and end all...i know guys like Boachie & Lenke are often viewed that way...but i repeat...there are other excellent scoli surgeons!

    perhaps it would be a good idea to schedule other consults...if your insurance covers it...how could it hurt?

    i do NOT put up with rude treatment from any doctor or receptionist..went thru it with Lyme, and it taught me a lot!! i do not tolerate it! they are not gods...despite what some may think...or their receptionists may think, who may have a little worship going on! i think i mentioned that i walked out on a top Sloane Kettering surgeon for a tumor in my left femur...i refused to allow him to condescend and verbally abuse me!@ i didn't care how damn good he was supposed to be!

    best of luck...
    jess

  12. #12
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    ny
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    Well said, Jess.

    I know that Dr. Boachie is a very skilled surgeon but as you say, there are other excellent surgeons out there.

    Funny, a few years ago I had heard a few horror stories about the treatment of patients by Dr. Boachie's staff. There was even a post on here by a mom whose daughter was scheduled for surgery with him - and his office was threatening to cancel the surgery due to some insurance issue. If I recall, the insurance company said they would pay a certain percent (let's just say 80%) of the cost of the surgery, and Dr. Boachie's office was insisting on a dollar amount (rather than a percentage) or they were threatening to cancel the surgery.

    It just seems to be a pattern over the years with his office. I haven't heard these types of stories elsewhere. Perhaps the doctor is unaware of this mistreatment of his patients - or maybe it is one long-time rude staff member that is causing all this, but I'm with you that I would not put up with such rude treatment - period.
    Last edited by mariaf; 02-16-2011 at 09:25 PM.
    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/

  13. #13
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    yes, i remember reading that on forum...

    i saw Boachie years ago..probably 5 years ago...and he was kind and compassionate and took his time with me...
    but i did not book surgery, as it was just a consult...he didn't take my insurance, and i had the kind that i had to go to an in network surgeon, with no "assignment of benefits"...so i knew going into the consult that i wouldn't be having surgery with Boachie...
    i had almost zero interaction with his staff because of that...

    as you said, it is a shame when the staff is giving the office a bad name, and the surgeon probably isn't aware of it...i think doctors really need to know what is going on in their outer offices!

    jess

  14. #14
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    Hey Jess,

    I'm so glad to hear that you found him to be a compassionate and caring doctor. Like I said, I suspected that he might be unaware - to some extent at least - of how his staff member(s) were treating patients and that it was not a direct reflection on him or his bedside manner.

    Bottom line, though, as you state - he and other doctors need to know what is going on in their outer offices because the patients, who are so vulnerable at this time, are having to deal with it.

    Another issue I have - totally off topic but it bugs me - is that Dr. Boachie does so much charitable work in Africa, which is great - I am TRULY glad he is helping those in need. But it confuses me how a man who will give so much of his time and perform surgeries free of charge in another country has a totally opposite approach when it comes to getting paid here in the U.S.. Meaning that he doesn't take most insurance plans (not sure if he takes any). But I know that back when my son was first diagnosed in 2000, I was getting names of some of the best orthos in the area and I called his office, among others. The woman (I wonder if it was the same one) said curtly "well if you want a consult with him it's $600 (I'm pretty sure that was the figure, it's been a while) and he doesn't take insurance" and she practically hung up on me.

    So, getting back to the topic here, regardless of how caring the doctor is, this stuff is going to leave a bad taste in one's mouth.
    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/

  15. #15
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    Location
    British Columbia
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    Now I have to ask. If Dr. Boachie doesn't take 'any' medical insurance plans does that mean that he takes cash only and if so does that mean that people are paying $150K out their pockets to him!? O_o
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

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