Scoliosis Revision Surgery

[Phyllis Bootel]

Hi, My name is Phyllis B. and this is my first time participating in this venue. I am 66 yrs old and in need of revision surgery. My original surgery (anterior & posterior fusion with Harrington rod was in 1989. I've experienced a pretty good life until the last few years when I began to notice numbness, weakness, heavyness in my leg. I've since had a laminectomy & several injections to various joints/nerves to no avail. I also just underwent a cervical laminectomy which took me 3 mos to recover from. This brings me to a suggestion that I see Dr. Boachi in New York at the hospital for special surgeries. He told me that I needed revision surgery including removing a part of my original fusion and then continuing it down to the sacrum. We were told that he does not participate with any insurance and that his fee must be paid in full prior to the surgery. I am wondering if anyone has come across this situation and do you know of any grants or foundations that would help subsidize the $80 or $90.000 amount. Also, does anyone know of any other spine surgeons in or around the East coast who does this type of surgery & would participate with insurance. I am hoping that someone who reads this will have some suggestions. Thanks, Phyllis

[LindaRacine]

Hi Phyllis...

It doesn't get much better than Dr. Boachie, but Frank Rand in Boston also does a lot of revision surgery.

http://www.spineuniverse.com/mdpage.php?doctorID=320

I suspect that you already know this, but thought I'd say it anyway. Although Dr. Boachie doesn't accept insurance reimbursement, most plans allow you to go out of network, and they will pay something like 80% of reasonable fees. Unfortunately, that could still amount to a lot of $.

Best of luck.

Regards,
Linda

[Phyllis Bootel]

Hi Linda, Thanks for responding. Dr. Boachi does not participate in any way with Medicare. Therefore, there could be no submission & further, our secondary would not reimburse because of the non payment from Medicare. I am not aware of the Dr. you mentioned. Is he located in the Boston area? I plan to contact some additional names given me (2 from Dr. Boachi's office staff) & others up and down the East Coast. Have you had contact with Dr. B? Again thanks for responding, Phyllis

[Diane BCSW]

Welcome to the forum Phyllis. You and I share the same age. I had my original scoli/kyphos surgery in August of 2003 and I've been playing games with it ever since. It's not the doctor's fault, but rather my age, my osteoporosis, and whatever else.

I'm going to give you the names of two doctors I've used throughout the past five years when all of this started. A lot of people travel if it means getting to a good physician who takes their insurance... it's pretty common and the staff has people who help you with your arrangements, etc. First one is Dr. Alexis Shelokov who did my first surgery. He heads up the Baylor Scoliosis Center located just north of Dallas in Plano.
http://orthodoc.aaos.org/shelokov/

There was a period of time that Dr. Shelokov was having a controversy with United Healthcare and I got a letter telling me I had to find a new insurance or a new doctor, so I found Dr. Robert Viere, who has great credentials and is an excellent surgeon. He operates at the Baylor Hospital in downtown Dallas but the good of that is since the hospital is so huge, they have a hotel which is for the patients and their families. He's an excellent surgeon and has a sweet manner about himself.
http://www.ntspinecare.com/viere.htm

On each website, you'll get a lot of information. I see that Dr. Shelokov is accepting UnitedHealthcare again!! But I've been happy with Viere.

There's a doctor in Armarillo who is well thought of. Someone is going to have to tell you his name & website because I can't remember his name.

It's that *age* thing again!! haha Hope you get to feeling better and get proper care very quickly.

Hope this helps. There are many on the forum who travel.

[loves to skate]

Hi Phyllis,

Dr. Rand did my surgery and I have had a very good outcome. Still some nerve pain in mostly my right leg. Of course it wasn't revision surgery, but I know he does do revisions. Dr Rand is very sweet and kind and observant and concerned about your total health. I received excellent care at the Baptist Hospital and the Cooledge House rehab hospital. Dr. Rand does take Medicare patients. My total out of pocket costs were between $2000.00 and $3000.00. I have a Medicare Advantage Plan PPO and neither Dr. Rand or the Baptist were in my network so it cost me a little more but was worth it.

I know that people from all over the country come to the Baptist for Orthopedic surgery. Their post surgery infection rate is extremely low which I feel is very important. Where along the East coast are you located? If I can answer any more questions you might have about Dr. Rand or my surgery, don't hesitate to ask.

Sally

[mish]

Hi Phyllis

Another doctor in the East Coast you might want to consult is Dr. Paul Glazer. He's at the Beth Israel Deacon Medical Ctr in Boston.

http://www.spineuniverse.com/mdpage.php?doctorID=852

Best of luck

[Phyllis Bootel]

Hi Diane, thanx for responding. I have some dr's names in NY that I think I will contact first. However, I will look up the dr you have given me. Also, I'm new to this & I'm not sure how to reply to each comment. thanks again, Phyllis

[Phyllis Bootel]

Hi Mish, thanx for responding. I will look up Dr. Glazer & check him out. I need all the help I can get. Phyllis

[Jacque's Mom]

Hi Phyllis - Dr. Errico from NYU in Manhattan is also a revision surgeon. He does take insurance. Good luck. Lynn

[LindaRacine]

Hi Linda, Thanks for responding. Dr. Boachi does not participate in any way with Medicare. Therefore, there could be no submission & further, our secondary would not reimburse because of the non payment from Medicare. I am not aware of the Dr. you mentioned. Is he located in the Boston area? I plan to contact some additional names given me (2 from Dr. Boachi's office staff) & others up and down the East Coast. Have you had contact with Dr. B? Again thanks for responding, Phyllis

Yes, Frank Rand is in Boston. If you Google him, or search on this forum, you'll probably find quite a few of his patients. Actually, Joe O'Brien, who is President of the National Scoliosis Foundation, had revision surgery done by Dr. Rand.

Regards,
Linda

[Phyllis Bootel]

Hi Phyllis - Dr. Errico from NYU in Manhattan is also a revision surgeon. He does take insurance. Good luck. Lynn

Thanks for responding Jacque's Mom. Are you having difficulties also??? Is that why you will be seeing Dr. Boachi tomorrow? Have you seen Dr. Errico in the past? If there were no financial issues I wouldn't hesitate to let Dr. B do my revision surgery. Again thanks for the response and good luck w/ur visit. Please let me know what your current problems are. Phyllis

[Jacque's Mom]

Thanks for responding Jacque's Mom. Are you having difficulties also??? Is that why you will be seeing Dr. Boachi tomorrow? Have you seen Dr. Errico in the past? If there were no financial issues I wouldn't hesitate to let Dr. B do my revision surgery. Again thanks for the response and good luck w/ur visit. Please let me know what your current problems are. Phyllis

Hi Phyllis - Yes I did see Dr. Errico back in 1999. He was recommended by my friend who had revision surgery by him and she had a fabulous result. At that time I did not need surgery. Since that time, I have gotten much worse but I have been going to Dr. Boachie for the past few years and decided to stay with him as he has an amazing reputation. I have chronic low back pain but it's now interfering with my sleep. The pain doesn't go down my legs but it is down my buttocks and is quite painful. The thing is when it really flares up, I feel my upper back hurts as well, and I guess that's the referral pain as I tend to stand differently in order to get some relief in my low back. It's a vicious cycle! I have been with pain management since 2002 where my pain level was tolerable until about a year and a half now with the meds I'm taking. Dr. Boachie recommended facet joint injections, which I did end of July and it's amazing how great I felt until about a week ago, as the shot has worn off. I'm so happy I got a few months of relief. Just happens my follow up appointment is tomorrow so the timing is right. He said surgery would be L3/4 fusion and at this point I'm "almost" ready. I'd like to have another shot first so that would get me through, the holidays, hopefully. I leave for Aruba on October 11th and I hope I'm able to have the second shot ASAP. I just can't imagine that flight feeling like this. I was hoping the shot would last the full three months but that didn't happen. I'm going into the office tomorrow and then take a subway for my 3:30 appointment. I will let you know how my appointment went. Please keep your fingers crossed. Regards, Lynn

UPDATE: Having my second shot, next Tuesday - thankfully!!

[JoAnn5]

Phyllis, good luck with whomever you choose as your surgeon. With all these good recommendations, i don't think you will go wrong. I hope all goes well with you and your procedures. ((( hugs ))) JoAnn

[Ginger W.]

Dr. Boachie did my surgery, but I also met with Dr. Shelakov and Dr. Lenke in St. Louis. Lenke is another well-respected revisionist. I would have been happy with Dr. Lenke or Dr. Shelakov.

Good luck, Phyllis!

[Donnagrace]

Phyllis,
Eight months ago I had revision surgery with Dr. Thomas Errico who is the Director of spinal surgery at NYU-Hosp for Joint Diseases. My surgery was a success and I am extremely happy with my outcome and the treatment I received. Dr. Errico does participate with some insurance programs; you should investigate this. I also know someone who had successful revision at NYU-HJD with a Dr. John Bendo and they also accept some insurance plans. I assume you are in the NYC area, so rather than travel to Boston or elsewhere, you might want to check with the spine doctors at NYU.

Hope this helps!
Donna

[Phyllis Bootel]

Hello Donna Grace, Thanks for your reply. I'm soo happy to hear how well you are doing. We do not live in the NY area. We live in Southern New Jersey outside of Atlantic City. I think I recognize some of the docs names you mentioned & I will try to contact them. Also, I've been in touch with some in the Philadelphia area suburbs. I'm in the process of faxing them my reports & waiting to hear whether they will see me. I really need to finally stop investigating potential docs at some point. I can't continue this process forever. Hopefully, one or two of the names will come thru.
Again, thanks for responding and any other info will be greatly appreciated. I'm just beginning to realize that those of us with scoliosis have a special bond with each other and each one of us wants to be of help whenever we can. Phyllis

[txmarinemom]

There's a doctor in Armarillo who is well thought of. Someone is going to have to tell you his name & website because I can't remember his name.

LaGrone is in Amarillo, although I haven't personally read much about his revision track record. His site says he specializes in it, but I'd definitely want to talk to former patients of any doctor. Initial OR revision surgery.

His website is http://www.scoliosismd.com/.

Best wishes to you, Phyllis.

Regards,
Pam

[Phyllis Bootel]

Hi Pam, Thanks for the info. However, we live in New Jersey so I've been contacting drs. in the Philadelphia & New York areas. I am encouraged to learn that other docs (besides Dr. Boachie) perform similar revision surgeries & who accept insurance. Hopefully, I'll be successful with one of them. Thanks again, Phyllis

[sadgirl]

Donna,
I am being told after 30+ years with a harrington rod, and a disc surgery done 2002, that I am in need of yet another back surgery...my regular orthopedic just wants to fuse again L4-5,S1 since it never took on the 2002 surgery however, i do have kyphosis and he will NOT operate on that.....so I went to see Dr. Errico as you mentioned.....

His NJ office was terrible, very long wait(over 1 1/2hrs) and then very unfriendly staff, then when he finally came into my room, he had the wrong chart and then he flat out told me, he would do total reconstructive surgery from neck down and that i needed it right away, he said I had to lose atleast 10 lbs and would have to participate with PT afterwards, think about that and call me to schedule, walked out.

My husband and I sat there for a minute, gathered our thoughts and said, this dr is not the one for me, he was rude, short with his answers and then when I got home and did my research in depth about him, I found out that he had a large lawsuit on him for paralysing several patients....

One of which I contacted and had a lenghty conversation....she is in a wheel chair for life now and she felt it was not just a medical "slip" that this happened but that the dr has become so overconfident, he is making mistakes and she is one that has to pay for that.

I never went back to him, however, I do need the surgery and its over 6 years later....I heard of a Dr. Frank Cammisso, spine orthopedic with Hospital for Special Surgery. Has anyone heard of this man? I am only 46 and have a lengthy list of health problems, this is just one of them. I need surgery but quite frankly, I dont know who to trust or go see????

[Phyllis Bootel]

Hi , I haven't been on this chat room for quite a while. Here is the update: After seeing Dr.Boachi @ The Hosp for Spec Surgeries in NY (He doesn't accept any insurance and will not participate in the process for you to be reimbursed) I went on a search for other docs who do the same procedures he described to me. The latest is: I live outside of Atlantic City so Philly is close enough and The Rothman Institute is located in several areas in and around Phila. After seeing a few docs in their practice and after hearing that I need a total revision and they propose to do the same surgery as Dr. B in NY, I've decided to go ahead with them. It will be done mid May and they are offering me 80 - 85% improvement with the symptoms in my leg. My original fusion with Harrington Rod was performed with this group and here I am 20 yrs later to come full circle!!! Needless to say this certainly will be my very last surgery. I had cervicel fusion done in NY last May and I'm still not 100%. I am 66 yrs old and I realize this is my last chance to try to be able to go for a walk. Right now I need to be in a wheelchair if there is any distance to walk. At the very least I hope to stop the progression where it is now. Hopefully, I am making the right choice!!!
If anyone has any comments I really would appreciate hearing from you.
Phyllis from Philly:cool::cool:

[ApplePie]

i'm glad to hear that things are working out. my family and i are desparately searching for an orthopedists to perform an anterior lumbar fusion with posterior straightening. we went to see dr. todd albert from the rothman institute and he did not seem too enthusiastic about performing a large spinal operation on my mother, also in her early 60s. would love to know who will be performing your procedure. good luck with everything.

[Phyllis Bootel]

Hi, I just read your thread re my upcoming revision surgery. Dr. Albert along with Dr. J. Rihn and a neuro will be performing the procedure. Every case is different and who knows how they make their decisions. I would suggest consulting with other orthopods and get several opinions. Good luck, Phyllis

[Brooklyn]

Best of luck to you Phyllis. I just had revision surgery with Dr. Matthew Cunningham at HSS (a colleague of Dr. Boachie's). I wonder if he would have worked with you on the insurance issues.

Brooklyn

[Phyllis Bootel]

Hi, I researched his position in Dr. B's practice. I was told his specialty is Cervical and yes, he would accept ins. Since, I need almost a whole revision, he wouldn't be the dr. for me. Thanx for the thought. What procedure did you have done and how r u doing?

[Brooklyn]

I had my Harrington rods removed after 35 years, due to an infection. Dr. Boachie was unavailable, so Dr. Cunningham took over. He took good care of me.

Good luck to you!