ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: highlife on January 01, 2009, 03:35:54 pm
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Folks:
On Tuesday, I had a telephone conference with Dr. Shahinian at Skull Base Institute. It was very informative for all of us, my personal doc, my husband the doc, and me on a speaker phone. I'm very confident now that if I have a surgical procedure done, it will be there. Because I have a seizure disorder and because I still have my hearing, it is the only thing that makes sense. I think I will go ahead with the 6 month MRI in March and make the decision then. I have been in watch and wait, but now am feeling like I am only waiting for things to get worse, and I'm deciding that is no way to live. I would rather be on the other side waiting and working for things to get better.
I can hardly wait to hear from Jared who had his surgery on Monday at SBI, if all went as planned. Hope all is well with him and his family.
Steph
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Hi Steph,
We sent you a PM detailing Jared's surgery. Did you receive it? If not, let me know and we will send another.
Thanks,
Ron, Karen & Jared
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Please, send me also know about Jared's outcome. I am also an SBI alumni, so to speak, and would love to hear from you!
Eve
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All,
Partner and I recently went to Mayo for a second opinion, and while we were there I asked the surgeons about their opinion of the endoscopic approach used at the Skull Base Institute. Their reponse was to describe the person doing these surgeries as "a criminal." Rather a strong response, I thought. I asked why, and one of the docs said the person performing these procedures was actually trained as a plastic surgeon. I don't know if that is true; but I felt I should report it to this group, at least.
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A quick search of SBI's website revealed this: http://www.skullbaseinstitute.com/curriculum.htm (http://www.skullbaseinstitute.com/curriculum.htm)
It certainly doesn't look like the Director was trained as a plastic surgeon (assumings that's who they meant; they have lots of doctors on staff at SBI).
Keep in mind that hospitals and treatment facilities are a BUSINESS. As such, sometimes you'll run across someone who absolutely trashes the competition without any basis in fact. I think that it's absurd that he would call another doctor a "criminal" without some basis to make such an accusation.
Admittedly, I don't know much about the Endoscopic approach, however I've seen lots of good things about it. The long terms results are yet to be written on this approach (to my knowledge), however it's definitely promising.
Regards,
Brian
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Actually, based on the CV at the link Brian posted, he was trained in plastic surgery. Among other things.
A couple of his job positions prior to SBI tell much of the story:
# Chief of Service, Division of Skull Base Surgery, Department of Surgery, Cedars-Sinai Medical Center, Los Angeles, CA, 1996-2004
# Assistant Professor of Surgery and Neurosurgery, Departments of Surgery and Neurosurgery, State University of New York, Stony Brook, NY, 1994-1996
# Assistant Clinical Professor, Institute of Reconstructive Plastic Surgery, Department of Surgery , New York University Medical Center, New York, NY, 1994-1996
He has also published articles on a range of medical subjects, including removing large tumors as part of facial reconstruction, and endoscopic approaches to pituitary surgery. It is quite a list.
I'd go there. :)
Steve
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Girlfriend -
thanks for the info.
IMO most docs - and lots of patients too - are skeptical about the whole endoscopic AN surgery thing because it's not currently the "norm". It's not widely used - which isn't to say it's not a good procedure - it's just done by very few doctors.
I've have several abdominal surgeries (related to infertility) that were endoscopic and found them to be very easy to recover from - which sure beats what I've heard about other more invasive abdominal surgeries where they quite literally cut you open.
I think it's very possible that endoscopic brain surgery will gain more popularity as time goes on and one of these days it just might become the "norm".
Time will tell.
Jan
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Steph ~
I'm pleased to learn of your decision to go with endoscopic AN removal surgery. I hope and will pray that it's successful for you, as I'm sure it will be.
Jan is correct. Endoscopic surgery has been around for over 25 years but using the endoscope for AN removal surgery is relatively new and many surgeons are either unfamiliar with it (my neurosurgeon claimed to know nothing about it) or simply not interested because they see it as a 'threat', as Steve pointed out. Back in 1987 I fell and broke 4 small but crucial bones in my face. They were repaired (perfectly) by a gifted surgeon using endoscopic surgery - and my legendary good looks were mercifully saved. :) I was back to work in no time and went on a vacation to Florida a month later. As a result of the endoscopic surgery, I had only a tiny scar on the side of my eye which was practically unnoticeable and has pretty much disappeared (or been lost within my wrinkles - I'm not quite sure). :D
I'm confident that you've made a good decision and will be pleased with the results.
Jim
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I too had a consult with Mayo and was told endoscopic surgery was a "gimmick". I'd be glad to tell you why I think it's not a gimmick if you'd lke me to.
When I met Shahinian, I talked to him about all the stuff said about him. He's quite aware, used to be greatly disappointed, but now ignores it. He is too busy doing his thing to think about what Mayo says. When I had my surgery, a surgeon from Madrid was there for the week watching the technique. Shahinian is international and draws international attention for his work. People come from all over, pay cash, to have him in their heads. He doesn't need the approval of Mayo.
I'm recovering fabulously. Surgery was March 4. I'm meeting friends for lunch, driving the car and generally speaking getting on with life. I owe Shahinian an eternal debt of gratitude. I wake up in the morning to hear the birds singing. Not a bad outcome, I'd say.
Steph
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Hi Steph, I am so glad you are continuing to recover so well, would you have any idea of the approximate cost of the surgery for those who have to pay?
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I was quoted $135,000 from SBI. I'll have to fill alot of S&H Green Stamp books to afford that!!! ;D ;D
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I was quoted $135,000 from SBI. I'll have to fill alot of S&H Green Stamp books to afford that!!! ;D ;D
:o Maybe I should write to Oprah.... ;D
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The cost for Shahinian's part was approximately 12K from what I recall, which they will help you write a letter to and get approval from your insurance co.. The facility is covered by insurance just like any facility. The cost in dollars is one thing, but a less invasive surgery with a potentially quicker recovery is well worth looking at. At the time I looked, and consulted with SBI, I felt it was very promising as a technology, and he, although originally a plastic surgeon, is a brain surgeon by virtue of doing some 5000 brain surgeries (not all ANs of course - some are pituitary, trigeminal neuralgia, etc.). Outcomes vary though, as outcomes in all surgeries do, and I personally liked the approach of translab for preservation of the facial nerve (vs endoscopic from the anterior). He also stated the facial nerve is never enveloped - but I believe it is more like "rarely" enveloped by the tumor - and I was sure mine was. In the end my nerve was very involved, so I am happy I chose this route, although my outcome had more to do with the tenacity of my surgeons. From what I have heard Shahinian is tenacious too - must be a trait of brain surgeons. I've had a long road back though, and envy some of the quick recoveries I've subsequently read about coming out of SBI. I am happy for them, though, and I follow suit now feeling almost 100%, coming up on my 1 year anniversary on the 28th!
Jules
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What I paid for the endoscopic surgery it is nothing compared with the fast recovery I experienced, being able to go to work 3 weeks after, go back to run 1 month later, facial muscles starting to move 45 days after the surgery, etc, that counts!. I had to travel from Ecuador (16 hours by plane) to have my operation with Dr. Shahinian and flew back to my country 17 days after without complications. Before deciding this kind of surgery me and my husband researched days and nights to chose the best option. I flew to another country to meet a good neurosurgeon and met at least 4 or 5 ENTs and they were not familiar with the endoscopic procedure. The hole in my skull it is the size of a dime and my scar is abt 4cm, just knowing that already I felt better.
I had facial paralysis due to the retrosigmoid procedure that I had and today in my appointment with the ENT, he was surprised about how good look my face, not even he realized that I had facial problems (This is the first time I meet him). Today it is 17 months after my surgery and the only one thing missed on me is my SSD, the rest is almost like before (balance). My ENT told me that in the future endoscopic surgeries will replace all the traditional procedures we have today.
I think it is a good option to consider.
Gloria