Trying to locate "my" doctor

[jrnyc]

i did a search using the search function at the top of this page...
it led me to questions someone with the forum name "cherrylips" ...she wanted to know what
questions to ask her surgeon about in 2011...
LaurieAnn answered her question "What questions shall i ask?" with a long list of suggested
questions....you might find some of the questions apply to your situation....
so...if you go to the search spot up top, type in "cherrylips" you will find her...
then, if you click on the part when her name comes up with her posts, where it says "find all posts,"
you will see all her previous posts, and will be able to click on the one "What questions shall i ask" and see the list LaurieAnn wrote...

hope that explanation isn't too complicated...

jess

[lordswild]

appointment with Dr. Hey

I am so very, very disappointed with my experience with Dr. Hey...

The directions I was given to get to his location were not correct...although I was not late, the office called me as I was trying to locate the exit to go to the hospital--it was nearly 45 minutes early but I now know it bumped me to last to be seen--when I apologized and explained that I had followed their directions, I was told that the landmarks in the directions are always changing--wish someone had bothered to let me know. I had passed the entrance to the hospital probably ten minutes prior to the call...

then, he spent no more than fifteen minutes with me...

I have no clue as to what is planned...and was not given the booklet I was told I should read along with some other information...and my MRI has never been scheduled...

It was a four hour trip...

I now feel so uncomfortable with the entire situation--and very, very UNimportant in his view-- that I am considering trying to locate another doctor...

[Doreen1]

I'm sorry to hear about your experience with Dr. Hey. Perhaps this hiccup in your journey will lead you to the right surgeon as that happened to me (one door closed but another opened). What is the measurement of your curve(s)?

Warmly,
Doreen

[jrnyc]

a few years ago. i had a negative experience on the phone with his staff...
sorry to say i never bought his great reputation....but maybe that is just me...
i hope you find the right surgeon for you....
it is obvious Hey is not that doctor...but i am sure the right one for you is out there...

best of luck...
jess

[rohrer01]

I had a bad experience with him, too. He was very talkative with me on the phone and made all kinds of promises that he'd do everything in his power to help me, including offering to fly me to NC to be seen! I e-mailed his office frequently with questions and worked on trying to get insurance approval to get out there. I had a scheduled appt with him. When I e-mailed him with a serious (in my mind) concern, he dropped me and cancelled my appt. I have always thought it was because the insurnance didn't go through, but I still wanted his second opinion. He'd already given me his opinion over e-mail that I would probably need surgery, as the office staff was trying to put together an insurance proposal of the procedure that he was planning to do. I was really mad at first that he just dropped me, but in the long run I'm happy because it saved us a very expensive trip out there.

I try not to post on Dr. Hey threads, as he is so highly recommended on this forum. But you very well may be better off without him from some of the negative testimonials I have read. I had to search the internet to find them. But, then again, every doctor is going to have some patients with bad outcomes, even really, really good doctors. For this reason I try to look at the good as well as the bad outcomes when choosing a doctor.

[mabeckoff]

I am very sorry that you had such a bad experience with Dr Hey. I hope that you can find another surgeon that can help you

[lordswild]

I'm sorry to hear about your experience with Dr. Hey. Perhaps this hiccup in your journey will lead you to the right surgeon as that happened to me (one door closed but another opened). What is the measurement of your curve(s)?

Warmly,
Doreen

Hi

I am not very good at using this system...hope this reply is in the proper place...

My curve is 80 degrees...Dr. Hey said he could only offer an improvement of 50%

Who did you have as a surgeon if I may ask?

I am going to call Craig Brigham and Bruce Darden in Charlotte, NC tomorrow...Brigham was recently honored as the top doctor (in Charlotte?) and Darden is one of the 50 top spine surgeons but only does cervical now...

Please, please every one give me some more feed back and direction...

[rohrer01]

I would recommend Dr. Lenke in St. Louis with a curve that size. Unfortunately, a 50% correction is about what most people can expect from what I've been reading on the forum. Some get lucky and get a really good correction. I think it has to do with multiple factors having to do with the condition of your spine. I wish you the very best and hope you find "your" doctor.

Rohrer01

[Doreen1]

Hi

I am not very good at using this system...hope this reply is in the proper place...

My curve is 80 degrees...Dr. Hey said he could only offer an improvement of 50%

Who did you have as a surgeon if I may ask?

I am going to call Craig Brigham and Bruce Darden in Charlotte, NC tomorrow...Brigham was recently honored as the top doctor (in Charlotte?) and Darden is one of the 50 top spine surgeons but only does cervical now...

Please, please every one give me some more feed back and direction...

I know I must sound like Dr. Lenke's cheerleader lately, but he really works miracles with his hands. He only sees patients who are what he calls, "the most severe of the severe," so his criteria for accepting new patients is a minimum 70 degree curve(s) or higher. I've talked with many of his patients who have BCBS insurance which consider Lenke in-network, but of course, that depends on policy specifics, state-by-state. Call his nurse, Naomi 314-747-2538 and explore your options with Dr. Lenke.

I live in Atlanta and was hesitant to seek an out of state surgeon, but when my local surgeon felt I was too severe for her skills and she canceled my local surgery, I came to the realization that scoli spinal fusion surgery is not like getting a tonsil taken out, especially with severe curves. The best scoli surgeons in the world are in St. Louis, NY and UCSF (San Fran). Traveling to one of the best gave me peace of mind and a life I've only dreamed of; impressive correction and pain-free. I read so much about Dr. Lenke on this forum and when I found out he was in-network with my insurance, I was on a plane to St. Louis in Sept to meet Dr. Lenke and then had my surgery 8 weeks later in Nov (thanks to a cancellation slot opening up).

Just my $.02. You deserve to talk with one of the best. Keep us posted on your journey.

Warmly,
Doreen

[golfnut]

I have to chime in as another Dr. Lenke fan. Google: Dr. Lenke-You Tube and you will see an amazing video from a family whose son was referred to Dr. Lenke. He also has a good web site with before and after pictures as well as testimonials. I can't tell you how fortunate I feel to have had Dr. Lenke as my surgeon. He's awesome!

[lordswild]

I know I must sound like Dr. Lenke's cheerleader lately, but he really works miracles with his hands. He only sees patients who are what he calls, "the most severe of the severe," so his criteria for accepting new patients is a minimum 70 degree curve(s) or higher. I've talked with many of his patients who have BCBS insurance which consider Lenke in-network, but of course, that depends on policy specifics, state-by-state. Call his nurse, Naomi 314-747-2538 and explore your options with Dr. Lenke.

I live in Atlanta and was hesitant to seek an out of state surgeon, but when my local surgeon felt I was too severe for her skills and she canceled my local surgery, I came to the realization that scoli spinal fusion surgery is not like getting a tonsil taken out, especially with severe curves. The best scoli surgeons in the world are in St. Louis, NY and UCSF (San Fran). Traveling to one of the best gave me peace of mind and a life I've only dreamed of; impressive correction and pain-free. I read so much about Dr. Lenke on this forum and when I found out he was in-network with my insurance, I was on a plane to St. Louis in Sept to meet Dr. Lenke and then had my surgery 8 weeks later in Nov (thanks to a cancellation slot opening up).

Just my $.02. You deserve to talk with one of the best. Keep us posted on your journey.

Warmly,
Doreen

Thank you for your information--I really appreciate it--I have already contacted Naomi and am awaiting a reply from her...for the first time in months, I feel hope...did Dr. Lenke have any question that he could reduce your curve to 10 degrees? Dr. Hey stated that a 50% correction was standard for those in my category (I believe I am correct in this statement--certainly, he told me that others he had operated on like me only received a 50% correction also)...I will appreciate any other information you might think of or want to share...

[Doreen1]

Lenke was expecting 70% - 75% correction so he and his nurse were surprised when he got 90% correction. Lenke told my husband that once he got in there, he discovered my spine was very flexible. Leading up to my surgery, I did exactly what Lenke suggested: walking as far as I could within 1 hour, doing yoga specifically to make the spine limber and some PT exercises. When I showed up for surgery and told Dr. Lenke I did everything he recommended religiously, he laughed and said, "I'm glad someone listened to me." My total daily exercise routine was 1 hour walking, 30 min yoga and 30 min PT exercises.

I just sent you a PM.

Warmly,
Doreen

[KathK]

curve corrections

Hi,

I think it's a fantastic idea to get into good shape prior to spinal fusion surgery. I just want to point out to folks considering surgery (or consulting with surgeons) that there are other factors (I believe) involved in the amount of correction that can be achieved in any one particular spine. For example, if a spine has begun to auto-fuse or if a spine has a large amount of arthritis (like mine did), even a great deal or yoga and/or exercising will not necessaily equate to a greater than 50% correction. I had the same amazing surgeon as Doreen and, thanks to being pain-free prior to surgery, I was able to work out faithfully in the year prior to my surgery. I really was in the best shape of my life. Still my correction was 50%.

That being said, the reality is that a curve of 25-35 degrees spread over a large number of vertabra is not very noticable (imho).

So, I don't think a surgeon should necessarily be ruled out for quoting a 50% correction. That is all Dr. Lenke had ever told me would be possible.

However, I would absolutely want a surgeon who does primarily to exclusively scoliosis cases (50-100 each year).

Kathy

[lordswild]

I have to chime in as another Dr. Lenke fan. Google: Dr. Lenke-You Tube and you will see an amazing video from a family whose son was referred to Dr. Lenke. He also has a good web site with before and after pictures as well as testimonials. I can't tell you how fortunate I feel to have had Dr. Lenke as my surgeon. He's awesome!

I would really appreciate any further feedback you would feel comfortable sharing if you don't mine as we are the closest in age...one big concern is the aftermath of the surgery...

In reviewing the messages, it appears that a common point that could predict the percentage outcome (if you will) is whether or not the spine has arthritis or a great deal of it or is flexible--would that be a fair assumption?

Further, just as an aside, I notice that all of Dr. Lenke's patients have had a very good--above average--outcome--all told: correction, pain etc.

I am feeling better and better about this and am hoping that I am on the right track--I do want the last years to be the best (or at least without the "trappings" that I have now)...I feel like I am in a movie about someone else's life...

[Pooka1]

Linda will correct me if I'm wrong but the intrinsic flexibility determines the maximum degree of correction, all else equal. Now whether intrinsic flexibility can be changed with PT or whatever, I don't know. Good question for an orthopedic surgeon.

There is also an issue will leaving some curve that could otherwise be corrected to achieve a more perfect overall balance. This seems dependent on curve type.