Author Topic: Minimally Invasive Surgery  (Read 5989 times)

highlife

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Minimally Invasive Surgery
« on: January 01, 2009, 03:35:54 pm »
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

Rt ear AN - 10x6x4mm
dx 9/08
wait

rkks

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Re: Minimally Invasive Surgery
« Reply #1 on: January 04, 2009, 04:59:08 pm »
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
Parents of Jared (age 19)
Right side AN (10x9x7 mm)
Diagnosed 9-17-08
Endoscopic surgery on 12-29-08
Skull Base Institute, Los Angeles
Dr. Hrayr Shahinian

jerseygirl

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Re: Minimally Invasive Surgery
« Reply #2 on: January 04, 2009, 05:27:06 pm »
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 
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Girlfriend

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Re: Minimally Invasive Surgery
« Reply #3 on: March 06, 2009, 01:35:05 pm »
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.

Pooter

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Re: Minimally Invasive Surgery
« Reply #4 on: March 06, 2009, 05:04:06 pm »
A quick search of SBI's website revealed this:  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
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

sgerrard

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Re: Minimally Invasive Surgery
« Reply #5 on: March 06, 2009, 10:01:07 pm »
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
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

leapyrtwins

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Re: Minimally Invasive Surgery
« Reply #6 on: March 08, 2009, 01:15:57 am »
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

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jim Scott

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Re: Minimally Invasive Surgery
« Reply #7 on: March 08, 2009, 03:07:53 pm »
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

 
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

highlife

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Re: Minimally Invasive Surgery
« Reply #8 on: March 17, 2009, 12:22:05 pm »
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
Rt ear AN - 10x6x4mm
dx 9/08
wait

Esperanza

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Re: Minimally Invasive Surgery
« Reply #9 on: March 18, 2009, 11:04:41 am »
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?
Profoundly deaf suddenly on AN side with vertigo January 3rd 2008.
12mm left side AN diagnosed 20th Jan. 2008.  MRI  in July shows no growth. What do I do now?????

Seal

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Re: Minimally Invasive Surgery
« Reply #10 on: March 18, 2009, 11:31:24 am »
I was quoted $135,000 from SBI.    I'll have to fill alot of S&H Green Stamp books to afford that!!! ;D ;D
Diagnosed 1/14/09 - 2.4cm AN right side --- about 70% cycstic
Retrosigmoid wiih McKenna & Barker - total removal successful on April 13th. 
Issues: balance, facial & mouth numbness, hearing loss right side
Results:   numbness gone, balance is good, SSD right side. Great results.

Esperanza

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Re: Minimally Invasive Surgery
« Reply #11 on: March 18, 2009, 05:36:20 pm »
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
Profoundly deaf suddenly on AN side with vertigo January 3rd 2008.
12mm left side AN diagnosed 20th Jan. 2008.  MRI  in July shows no growth. What do I do now?????

JulieE

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Re: Minimally Invasive Surgery
« Reply #12 on: March 18, 2009, 08:45:09 pm »
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

Arasha

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Re: Minimally Invasive Surgery
« Reply #13 on: March 18, 2009, 09:45:59 pm »
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

Left side AN 2.5x1.8 removed on 10/17/2007 endosc. by Dr.Shahinian (retrosig) at SBI, LA,Ca. Facial phalsys (almost back). Balance issues. Tinnitus. MRI 8 months later showed AN was resected completelly.TransEar 11/2008. Clinical trial for SoundBite 11/2009. SoundBite user.I have the best family.