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lordswild
01-06-2012, 11:33 AM
I have reached the point that I do have to have surgery and am trying to locate the best doctor for me...I live in NC on the NC/SC line and have tentatively narrowed my selection to Craig Brigham with Bruce Darden assisting as he does not traditionally do adult sugery now but does assist...I am willing to go any where my insurance (Medicare and BC/BS SC) is accepted...First, I asked the internet for the best surgeons for scoliosis--picked out 5/6 of 10 and contacted them (they were great on the whole)--the doctor at MUSC who has been "following" me for years recommended Bruce Darden (who said they were in organizations together and BD is one of the top 50 spine doctors) and he recommended Craig Brigham who I had seen years ago and heard about from the MIT list--I contacted Dr. Darden simply b/c my MUSC doctor recommeneded him--I have a call in now to see if my MUSC doctor also knows of Dr. Brigham
Linda, I know you have a great deal of knowledge from the MIT site years ago and will appreciate your input--should a person only have a SRS doctor? If you feel free to do it, please make some recommendations. I am 73 but said to be in top health--passed two stress tests, blood work and bones A ok, nerves shot!!!

mabeckoff
01-06-2012, 11:43 AM
https://www.heyclinic.com/index.asp

Dr Hey in Raleigh would be my choice if I still lived in NC. I met with him and was very impressed

loves to skate
01-06-2012, 02:16 PM
I'm with Melissa. My spine Doctor in Boston recommended Dr. Hey to me when I saw him last May. I needed someone nearby since we moved from the Boston area 1 1/2 years ago. Dr. Hey seemed very compassionate and was very thorough. Although I am not planning on having any more surgery, I needed someone who could recommend Physical Therapy, Pain Clinics and the like.

Tell us a little something about yourself, as in your curves, male or female, and how long you have been dealing with scoliosis.

Welcome to this great forum.

Sally

lordswild
01-06-2012, 06:04 PM
I'm with Melissa. My spine Doctor in Boston recommended Dr. Hey to me when I saw him last May. I needed someone nearby since we moved from the Boston area 1 1/2 years ago. Dr. Hey seemed very compassionate and was very thorough. Although I am not planning on having any more surgery, I needed someone who could recommend Physical Therapy, Pain Clinics and the like.

Tell us a little something about yourself, as in your curves, male or female, and how long you have been dealing with scoliosis.

Welcome to this great forum.

Sally


I am not sure how to use this forum so please feel free to advise if I am not doing the correct "thing".

I am so, so very appreciative of the input that you and Melissa have given me and intend to follow through on it--Raleigh would be my choice as it is two hours from me rather than four for Charlotte and my cousin lives near there. And the NE Baptist Hosp recently came up in conversation with a lady who works for a friend of mine and whose daughter had sugery with Dr.Emmons. I have the information for Dr. Rand. Meant to be!!!

I am a female--although I have always known that I had scoliosis (very mild) my problems began with an automobile accident in 88 and rapidly progressed with several failed surgeries for ruptured diverticulitis nearly resulting in death (thought I had flu and waited days before going to ER), hernias, etc Now I have multiple painful issues--four "blown" discs, muscles and ligments detached from hip, gross scoliotic "area" and am on a scheduled meds to my disgust. I am in pain all the time despite the meds and have "existed" for the past two years--and this despite giving birth twice and a loss without meds. At this time, I resemble the letter "C". I was 5'8" and was asked to model at 15 so my body was OK according to general standards--no lumps or bumps but some pain for as long as I can remember.

Animals are my passion. I have one horse having lost another just over a year ago and a dog who goes every where with me--in the front seat of the car sitting up like a judge. I am a member of a nationwide rescue group.

jrnyc
01-06-2012, 07:01 PM
i hope all the compassion you have shown animals comes back to you
tenfold when you have your surgery!
animals lovers are the best people...
so now i know you are a good and kind human....

i hope an excellent scoli surgeon can help to transform your body so you
may have a quality of life, without all the pain you have been thru!

jess...and Sparky

Doodles
01-06-2012, 10:18 PM
Lordswild--
Welcome to the forum and for sharing some info with us. I think Melissa and Sally have given a very good recommendation for your area. I didn't have surgery until 57 and as we age we certainly need the very best surgeons. I could have found lots of surgeons for "kids" but adults were a lot different.
I was just at a meeting last night and the speaker was from Paws of Life. She is training others nationally who do search and rescue and brought along a great border collie who spent a great deal of time with me and I have some hairy black pants to prove it. I am a big dog lover! It was so interesting and so coincidental that you would mention that you were a member of the nationwide group--weird! Janet

LindaRacine
01-06-2012, 10:46 PM
Hi...

Welcome. It's always nice to hear from one of my early buddies.

While I don't think it's a hard and fast rule to select an SRS surgeon, I'd want to be really certain about someone who isn't a member. I agree with Melissa and Sally about Dr. Hey. He seems to be a very good surgeon, and he is a really nice person.

Best of luck.

Regards,
Linda

lordswild
01-07-2012, 05:42 PM
Thank you to every one again for the input--I felt that I would get the help I needed and wanted when I got on the forum--and it was a struggle due to my ignorance--I am going to see Dr. Hey as soon as I can get an appointment--his site states that a referral is necessary now but that is not a problem...unless he turns me down (is that possible?-- scary thought), I will have my surgery with him...

My daughter and I have been animal lovers and advocates as long as I can remember and, although I do not feel that we are obnoxious about it and I have said more here than usual, we are known for this (my daughter and I have shown up unexpectedly twice to pick up two different horses in training b/c we had firm evidence that they were being mistreated despite up front conversations about our expectations--she came home one night with a nearly dead dog in tow--the country natives were about to eat him)--and I wish I could have as many as I want but that's not possible or realistic and maybe a little greedy...so I am trying to help those that need help--a long time friend introduced me to this group--we receive emails when any animal is found and needs a home--they can be transported almost any where in the country--it is amazing what the group accomplishes...I will say that even when I am gone, my animals will continue to live as they do presently...

Again, my most heart felt thanks for your input...please feel free to send any ongoing comments--I know far too little...

lordswild
01-12-2012, 05:20 PM
I spoke to Dr. Hey's office Monday morning, got together the information requested, spoke to my GP for referral Tuesday afternoon, faxed everything mid morning Wednesday, received a phone call from Dr. Hey's office at lunch and had an appointment late Wednesday afternoon...if there is a cancellation, I will receive a phone call...I am still in shock at the speed with which this has all taken place...seems like a very good omen to me...

mabeckoff
01-12-2012, 07:06 PM
I spoke to Dr. Hey's office Monday morning, got together the information requested, spoke to my GP for referral Tuesday afternoon, faxed everything mid morning Wednesday, received a phone call from Dr. Hey's office at lunch and had an appointment late Wednesday afternoon...if there is a cancellation, I will receive a phone call...I am still in shock at the speed with which this has all taken place...seems like a very good omen to me...

Please say hi to me from Melissa Beckoff and tell that I am doing OK. Thanks

Be prepared to spend some time with him. He will take as much time as you need. I went to see him as a second opinion favor from my CA surgeon and he spent
almost 3 hours with me knowing that I was not going to have my surgery with him. He told me that the reason he left Duke Hospital and opened his own practice was to be able to take care of his patients in his own way and to be able to spend as much time with them as needed.
Also, I wanted to say that I wished that I had gone to him in the beginning of my nightmare instead of my Charlotte surgeon. I do not think that it would have ended up the way it has if I did. But he was 3 hours from my house as opposed to 1 1/2 hours to Charlotte.In addition my husband worked in Charlotte and it made it easy for him to visit. Oh well, one cannot live in the past

JenniferG
01-12-2012, 11:24 PM
That WAS super-speedy. I hope the whole journey goes as smoothly as it has so far!

lordswild
01-13-2012, 04:49 PM
Once again, I thank the Forum for the help, input, encouragement, the good will and feeling...it cannot be replaced or purchased.

patty22
01-14-2012, 11:05 AM
I sent you a private message.. Hope you read it :)

lordswild
02-28-2012, 02:21 PM
Linda and all...

What kinds of questions should I ask Dr. Hey? Should I also go to at least one more doctor? If so, does any one have any knowledge of Craig Brigham and/or Bruce Darden of Charlotte, NC? I am becoming depressed the closer I get to my appointment and/or surgery. Any input will be greatfully appreciated...

lordswild
03-16-2012, 07:10 PM
Linda and all: Please send any suggestions for questions for Dr. Hey--my appointment is Monday and I am really not sure of the questions that I should ask....

jrnyc
03-16-2012, 09:44 PM
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
03-27-2012, 09:42 AM
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
03-27-2012, 10:26 AM
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
03-27-2012, 10:38 AM
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
03-27-2012, 04:20 PM
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
03-27-2012, 05:37 PM
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
03-27-2012, 06:17 PM
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
03-27-2012, 06:36 PM
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
03-27-2012, 06:44 PM
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
03-27-2012, 06:53 PM
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
03-28-2012, 04:38 PM
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
03-28-2012, 05:06 PM
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
03-29-2012, 07:39 PM
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
04-01-2012, 09:40 AM
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
04-01-2012, 09:55 AM
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.

golfnut
04-01-2012, 12:22 PM
Lordswild,
Please email me and I can go into as much detail as you would like. I would also be happy to talk to you on the phone. My email address is pottoff@htc.net
I'll look forward to hearing from you.

lordswild
04-29-2012, 10:04 AM
Has anyone had surgery or seen Drs.Vincent Arlet or Craig Brigham or Bruce Darden? I am not eliminating Dr. Lenke but want to cover my bases...my family is not happy that I am planning to have surgery so far away...

I will appreciate any and all input--thank you

LindaRacine
04-29-2012, 12:56 PM
Has anyone had surgery or seen Drs.Vincent Arlet or Craig Brigham or Bruce Darden? I am not eliminating Dr. Lenke but want to cover my bases...my family is not happy that I am planning to have surgery so far away...

I will appreciate any and all input--thank you

A little closer to home, Khaled Kebiash at Johns Hopkins has an excellent reputation.

lordswild
04-30-2012, 06:33 PM
Linda, thank you once again...should I assume that you would choose this doctor over Arlet? Arlet is actually in Virginia...

I first heard of Brigham on the old MIT site from a woman in Charlotte who had had surgery with Chewning and Brigham...

LindaRacine
04-30-2012, 09:48 PM
Linda, thank you once again...should I assume that you would choose this doctor over Arlet? Arlet is actually in Virginia...

I first heard of Brigham on the old MIT site from a woman in Charlotte who had had surgery with Chewning and Brigham...

Yes, but only because I don't know of any of Artlet's patients.

lordswild
05-08-2012, 06:21 PM
Linda (and, certainly, any one else who will contribute...)

I could not find much information on Kebiash and no one else has responded concerning him or Arlet--How can I locate information other than putting his name in the search thing b/c all I get is his JH page and is there any way the people you know would talk to me concerning Kebiash and surgery with him? What about Arlet? How could I locate any one who has had surgery with him? Who did you have your first surgery with? Thanks...

lordswild
05-08-2012, 06:34 PM
I will appreciate any and all post surgical survival tips--can I do this living alone? How does one not bend for one year? Is there a brace to make sure the surgery is not damaged? Is there a lifting limit? (After abdominal surgery, I was limited to five pounds.) Thank you.

lordswild
05-08-2012, 06:45 PM
I am very, very worried that I will have a problem with air flight such as some super aggressive TSA agent damaging my newly surgered back? How can that be prevented? I will be alone on this journey going and coming...

LindaRacine
05-08-2012, 06:53 PM
Hi...

There are several people on [URL="http://health.groups.yahoo.com/group/Flatback_Revised/"]THIS/URL] YahooGroups list who have had revision surgery by Dr. Kabaish. I don't know about finding patients of Arlet's, other than doing a Google search and/or asking his office for some referrals.

In response to your other questions, I think you can definitely do it alone, though traveling by plane alone, right after surgery, would definitely be stressful. I live alone, and recovered from surgery without any real difficulty. You don't have to go an entire year without bending. Every doctor has different limitations, but I think most allow at least some amount of bending at 3 months. You'll find that you can do just about anything with the help of a grabber. I think most surgeons put a lifting limit of ~10 pounds, at least for 3 months. Also, many surgeons put patients in postop TLSO braces for 3-6 months.

-Linda

Marina63
05-08-2012, 07:02 PM
I am very, very worried that I will have a problem with air flight such as some super aggressive TSA agent damaging my newly surgered back? How can that be prevented? I will be alone on this journey going and coming...
You can request special assistance, free of charge, from the airlines. They will treat you very well and very gently.

lordswild
05-08-2012, 09:39 PM
Thank you, thank you for the advice and correction of "rules"--feeling better. Please keep it coming...

Have neglected to state that somewhere along the line, someone was not correct: my lumbar curve is 70 and my (shock--another one) thoracic curve is 34--I was told one over 80--so alot of good news.

And also last week, Dr. Lenke's office called and told me that I had been accepted. Pre op June 20, 2:00.

Boy, a little pain med and a whole lot of stress will mess your mind up--I jumped a whole step from applying to aftermath--left out the middle...

loves to skate
05-09-2012, 01:55 AM
Good for you. June 20th will be here before you know it.
Stay strong, Sally

Confusedmom
05-09-2012, 10:53 PM
You were asking about correction. My bending films were not good, and Dr Lenke told me 50%. But it turned he reduced my curves from 80/40 to 16/0(negligible). I think many surgeons say 50% so you won't get your hopes up, but often do better than that.

As far as post-op, Dr Lenke generally does not brace his patients. You may get more rehab and OT if you live alone. Personally, I would beg a friend or family member to stay with me for a few weeks, or I would go to their house. I'm sure it can be done alone, but I think I would have been lonely, scared and depressed. Even a couple weeks of company could make a big difference.

Best wishes to you!
Evelyn