Author Topic: Retro Mastoid Surgery  (Read 5541 times)

acabitz

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Retro Mastoid Surgery
« on: March 27, 2009, 09:35:23 am »
New to the forum, first time.  Male, 32, right side 3cm AN.  First off, thank all of you for being online and sharing. 

I've consulted two neuro teams in the Atlanta area, Emory and Piedmont Hospital.  Both recommend the TRANSLAB approach. 

But through my family, we came across the Skull Base Institute in LA that performs this procedure using endoscopic tools.  Less

invasive, less complication rate, faster recovery time, better success rates.  A great computer narration on their website.

So my question is, is this surgery really that fantastic?  Has anyone here gone through this surgical procedure? 

I'm flying out Mon, March 30th 2009 to have consultation.  Any questions you could recommend would be most excellent.

Again, thanks to all and bless all.  Be well.

GRACE1

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Re: Retro Mastoid Surgery
« Reply #1 on: March 27, 2009, 10:03:41 am »
Welcome to the forum.  I had GK, but there are several people who have posted about SBI.  It sounds like a very promising procedure.  Hope you can join the group the next time we meet in Atlanta.  Good luck on your trip!!

Grace
Diagnosed 7/06: AN - right side: 1.3cm in transverse dimension, 6mm in AP dimension, and 6mm in cephalocaudal dimension.
GK 12/06- Wake Forest Univ Baptist Med Ctr
MRI 5/07- Some necrosis;  Now SSD
MRI 12/08- AN size has reduced 50%
MRI 12/11- AN stable (unchanged from 12/08)
Next MRI: 12/16

allegro17

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Re: Retro Mastoid Surgery
« Reply #2 on: March 27, 2009, 10:13:09 am »
Hi there and welcome!
This is one of the few times I feel I can actually respond :)  I have recently just done a ton of research about SBI (as well as radiaiton options and microsurgery) and have decided to have surgery there on 4/28.  A big part of that decision was talking to people on this forum who have had the surgery there with good outcomes and a positive overall experience.  Having said that, there are many people here who also have great outcomes with more traditional approaches!  I know this isn't exactly an answer to your question, since I haven't actually been through it yet, but thought I would share anyway.
Long story short, I really didn't think I would be choosing surgery at all for many reasons, one of which was the time it would put me out in terms of recovery, etc.  So, when I did decide to go the surgical route, Endoscopic surgery seemed to fit my personality and lifestyle the best.  Just having the promise of something less invasive getting me back on my feet and to my normal life sooner rather than later was key.  Then, talking to other people who have been through the surgery there, knowing they had good outcomes and felt confident in their decision both pre and post-op, I was ready to sign up.  
Let us know how your consult goes!  I haven't actually been out to LA to meet Dr. S - just had a phone consult.  I'll meet him the day before my surgery, on 4/27 :)
Good luck!

EJTampa

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Re: Retro Mastoid Surgery
« Reply #3 on: March 27, 2009, 10:24:40 am »
First, welcome to the group!  While we know you don't want to be here, I think you'll find a wealth of information, experience, and more importantly compassion and understanding here in "our home".

I had retrosigmoid surgery 3 weeks ago in Tampa.  I can't offer any personal experience regarding SBI, but I have only heard positive comments from those that had procedures there.
 
I can tell you that even with traditional surgery, recovery times can be short.  I was out of the hospital the day after surgery, and walking outdoors a couple of days later.  Outside of balance issues, which are common, I consider myself fully recovered already.  I don't get tired during the day.  I haven't taken naps since about day 3 or 4.  I'm about 90 percent back to normal.
 
The only thing I would recommend to you is that you research your choice of surgeon thoroughly.  Make sure they have performed many skull based tumor surgeries, and ask them point blank about issues with facial weakness and post-operative headaches. 
 
I think with the larger tumors, such as yours, the surgeries tend to take a little longer, requiring you to be under anesthesia for a longer period of time.  From what I've read from fellow forumites, this can extend the recovery time due to nausea and fatigue.  Again, I don't know if that applies to SBI. 
 
You will know in your heart when you have found the right surgeon.  I did.  It just feels right.
 
Oh, and you are probably at the hardest part of your entire journey.  For me, the time between diagnosis and waiting for surgery day were the worst!  Worse even than the surgery and post-op recovery :).
 
Hope some of this helps,
 
Ernie
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

cindyj

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Re: Retro Mastoid Surgery
« Reply #4 on: March 27, 2009, 12:45:37 pm »
Hello, acabitz, and welcome!  Are you in the Atl area?  I saw several docs here, but ultimately went to LA (House) for my surgery. 

As Grace said, hope you can join us for our Atl Support Group meeting...as soon as we get it set up.  We're looking to have the first one in May sometime.

I'm going to send you a PM (private message),so look in your messages at the top of the page...or in your email box...

Best of luck to you,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

Jim Scott

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Re: Retro Mastoid Surgery
« Reply #5 on: March 27, 2009, 02:19:57 pm »
Welcome, Acabitz:

I had retrosigmoid approach AN removal surgery almost 3 years ago and it worked out just fine, but, due to the many variables involved in this kind of specialized surgery, one person's experience doesn't mean another person will have an identical experience.  Endoscopic AN removal surgery is relatively new but seems to be gaining in popularity.  We have some members who have had this procedure and seem to have done well.  I know that, had it been readily available to me when I was diagnosed, I probably would have chosen this approach, which is certainly less invasive and subsequently, less traumatic, with recovery time being shorter and somewhat easier.   Fortunately for me, the surgeon I employed did a remarkable job and I not only experienced a successful surgery but a rapid recovery, so I have absolutely no regrets.  However, that was then.  This is now - and I think you're wise to investigate SBI and the endoscopic approach to acoustic neuroma removal.   I wish you a successful trip and more important, a successful end to your 'AN story'.  :)

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.

leapyrtwins

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Re: Retro Mastoid Surgery
« Reply #6 on: March 27, 2009, 03:03:43 pm »
Hi, Acabitz -

there are forumites who have had endo surgery at SBI and are quite happy with it.

Most of us who have had surgery have had it the "conventional" way - mostly because endo surgery for ANs isn't wide done yet.  One day, it may very well be.

Anyway, here is a link to some posts on SBI  http://anausa.org/forum/index.php?topic=8737.msg95625#msg95625

There are many others - some date back to 2006.  Just put SBI in the search box at the top of the screen under your user information and you'll find them.

Good luck,

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

rkks

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Re: Retro Mastoid Surgery
« Reply #7 on: March 30, 2009, 07:49:25 am »
Acabitz,

Our 19 year old son had surgery at SBI on Dec. 29, 2008.  He had fantastic results and his recovery time was relatively short (more than likely due to his young age).  Please read any of our posts under our 'rkks' name.  We would welcome any questions you might have after you have your consultation with SBI.  Please email us if you have any questions.

Ron & Karen
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