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View Full Version : Headed to NYC for opinion



Debra JGL
07-16-2008, 07:01 PM
Hello everyone,

My first time posting and I'm quite excited! I've been reading, inspired, and informed by the forum for a couple of years now. I'll just give a brief history. I'm currently 42 and I wore the Milwaukee brace from ages 11 - 15. Around my mid twenties (after years of waitressing at that point - I do not recommend this with scoliosis). I felt my curves were getting worse and I went to visit the doctor who I had originally seen. He assured (told) me that scoliosis did not progress, he did not x-ray or examing me (but did take his $50 fee). To his defense, I believe that was the belief at that time. More recently, I went to visit a doctor in Philly about my increasing pain (I also feel I have a little trouble breathing at night if I lie on my right side) a few years ago, I did not know surgery was even an option. It was wonderful to learn the choices I now have. Then the work and research began and I found this fantastic forum and finally don't feel like I'm the only one or very few at best.

My first Doc. in Philly recommended a posterior only approach from T-3 to L-2. He did not do bending xrays at that time. About 1 1/2 years ago I went for a second opinion and curve progression update with Dr. Lonner in NYC. He measured my curve at 69 degrees thoracic and 54 degrees lumbar. He did a bending xray as well. He said my lumber corrected to 24 degrees. He recommended Posterior surgery with anterior thoroscopic release from T3 to T10. He did say the anterior release was only to increase flexibility, and if I decided against it the fusion length would not change. To me, there is a big difference in what these doctors are recommending. All things being equal the shorter fusion without the anterior release is my choice. I'm tending not to want the anterior release because I don't think the additional correction is worth the additional risks of an added procedure, but I may not be thinking though that correctly. What I don't know is if my risks of revision surgery increase if I get the shorter fusion. I have decided to go for a third opinion.

I am gathering up all my xrays (I just had new xrays taken in June) and going to visit Dr. Boachie tomorrow. Thanks to this forum!!, I realized I have a top Doc. just a 2 short hours away. I have many questions for him and I'll let you know his thoughts. Of course, if you have any thoughts or questions that might be important to ask him, I'll appreciate that. I realize I'm just emailing the night before my appointment, not giving a lot of time for response.

With warmest regards and happy to finally sign in,
Debra

Susie*Bee
07-16-2008, 07:11 PM
Debra-- welcome to the forum as a poster! It sounds like you have things thought through-- that you've already got two opinions-- and that's great that you'll be seeing Dr. Boachie! I can't think of any questions for you besides what you've already come up with. Best wishes tomorrow! I'll be anxious to hear what his recommendation for you is.

bsprings
07-16-2008, 08:34 PM
Hi Debra,
My history is SO much like yours- Milwaukee brace, being told it would not progress, etc. I am 47 though- I had surgery with Dr Boachie in Dec '06. At that time my curve was around 100 deg and I had severe rotation as well (causing a big rib hump). The hump is GONE and I feel (and look) like a new person! Of course I think Dr. B hung the moon! My suggestion is to write all your questions down so you don't forget anything. Let us know how it goes!
Cathie

debbei
07-16-2008, 08:43 PM
Debra,

Welcome! Your story is much like mine, and we even have almost the same name :) I am 46 and my curves are 66 and 62 degrees. We saw Dr. Boachie in June, and then I decided to go with Dr. Neuwirth, now scheduled for October. I agree with Cathie, definitely write your questions down. He is an amazing man and I was very impressed. At the time I was there, he could have done my surgery in December, I'm sure that at this time he is booked well into 09.

I can't give you any advice on the different recommendations, but in my opinion, I'd put more faith in what Dr. B recommends. If you want another NY opinion, Dr. Neuwirth is also in NYC. In my case, their recommendations matched. (the only difference is the hardware type)

Good luck and let us know what happens tomorrow.

Janet
07-16-2008, 08:48 PM
Debra - another welcome to the forum. I am so glad you are seeing Dr. B for a 3rd opinion - that is exactly what I did.

You might pay special attention to his, IMO, conservative approach both to what he plans to do as well as how much correction he hopes to achieve. He is very low key but in my case he seemed to weigh many factors (my age, how long I've had kyphosis, flexability, ...). I had a 2nd consultation with him 6 months after the 1st, and he changed his plan somewhat since the 1st time (He at first said he would do the anterior access laproscopically, but then decided that there was a high risk that he would not be able to do all that needed to be done that way and he would probably have to perform a full-blown anterior incision anyway; he decided to not take any chances by putting me through 2 anterior attempts). By the way, I didn't have any post-op pain (that I remember) from that incision or the one at the iliac crest to harvest some bone tissue, though the posterior incision hurt like the dickens for quite some time.

He didn't promise me a perfect back, but he did achieve a better correction than what he had told me he hoped he could obtain. I am amazed that he delivered an almost straight back.

Do let us know how the consultation went.

Oh, if you read this in time, bring something to read and lots of food & beverage, because usually there is a long wait to be seen.

Debra JGL
07-18-2008, 12:10 PM
Thank you for your warm welcomes! I did see Dr. Boachie yesterday. When we first arrived, they told my appointment would need to be cancelled because he was in surgery longer than expected. I was very dissappointed, but definately understood (and of course my prayers were with whoever was in surgery). Luckily, shortly after I left the office (but not the city) they called and told me to come back later in the day.

I really liked him a lot, he seemed very genuine and caring, and took his time with me. But, I am feeling upset because he recommended fusion down to L3 or L4 which contridicted my previous two opinions. I was so hoping I might be a candidate for selective fusion, fusing only my thoracic curve as one doctor recommended. The doctor of another opinion recommended fusing to L1. I did not expect him to recommend this long of a fusion and I am worried about the impact this will have on my mobility and limits to what I can do. I guess he is taking a very conservative approach (thank you to the person who brought that point up) which he believes is the very best for long term recovery. I am feeling confused about understanding the risks and benefits of a longer versus a shorter fusion.

Debbie, may I ask you why you choose to go with Dr. Neuwirth? I have read many of your posts and our situation does seem so similiar, as does many of the members.

I feel very grateful to have the wealth of knowledge, experience and concern expressed in this forum while trying to make such a big decision.

Debra

debbei
07-18-2008, 12:23 PM
Debra,

I feel that Dr. B & Dr. N are probably equally talented. They've both been doing this for 30 years. I think Dr. N just doesn't have the 'international' exposure that Dr. B has due to his trips to Africa.

Originally, part of my reason was financial, as Dr. N and Beth Israel are in my network, and Dr. B and HSS are not. Even though Theresa at Dr. B's told me that my insurance does pay them very well, so that turned out not to be a sticking point for me. The bottom line then, was that Dr. B could not take me until December, and I could go with Dr. N earlier (at that time as early as Sept). I chose October to 1) give myself a good summer, and 2) get my kids settled into school. WHICH, btw, will be a nightmare as my 9year old daughter's school burnt down last week...another long story ACK!!. If Dr. B could have taken me in Oct, I would have gone with him.

So then I won't have to worry about the financial aspect at all, that makes a big difference. Even if my insurance does pay well, you know how it is looking over all the bills, fighting with the insurance over each little thing, calling the providers, blah, blah, blah....

Does that make any sense to you?

Debra JGL
07-18-2008, 12:45 PM
Hey Debbe,

The unknowns of the costs involved are a little unnerving, and the thought of taking on the insurance companies while in recovery doesn't sound like fun. Theresa did tell me though that HSS is now taking our insurance, but not Dr. Boachie or many of the other providers related to the surgery.

Dr. Neuwirth sounds like a great doctor. I learned so much from reading his book which has been such a great resource. Thanks for letting me know Dr. B and Dr. N's opinions matched for you. My biggest concern is about choosing the best procedure at this point. It's difficult for me because I've recieved 3 different opinions from 3 different docs.

(Yikes! about the school burning down. Luckily, there should be enough time to get settled where she'll be going to school by your surgery date. I know as a parent you just want everything to stay as 'normal' as possible for the kids. When mom's down for a bit, you just want everything else to go smoothly)

Debra