Author Topic: SBI Surgery behind me.  (Read 11014 times)

Tumbleweed

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Re: SBI Surgery behind me.
« Reply #15 on: February 21, 2009, 01:03:38 pm »
Thanks to Boomer for starting this thread and to all others who contributed. I think if I ever need surgery in the future for an AN, I will strongly consider the endoscopic approach and SBI. My AN appears to be responding very well to CK, but who knows what will happen down the road. I also have a suspected second tumor to deal with, although that's also a candidate for CK.

From what I've read online, it seems the main objection -- whether valid or not -- to endoscopic approach is increased risk of runaway bleeding. I'd like to see data on what percentage of patients undergoing this procedure actually had this problem (i.e., resulting in complications). Then we could better tell if the objections are practical or just theoretical.

In any case, discussions on leading-edge technologies like this are one of the best aspects of this forum. Eventually, I hope, AN treatments will become so refined that none of us will have to go through the post-operative side effects so many of us have reported here.

Best,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Darlene

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Re: SBI Surgery behind me.
« Reply #16 on: February 21, 2009, 01:28:20 pm »
Boomer,

Congratulations on your successful surgery.  I stil have not decided what route I am taking with my 1.5cm AN, so I greatly appreciate your providing any and all followup on this option.  I wish you continued good health. 


Tumbleweed,
What is runaway bleeding?   What are the complications?  Thanks for any information.

Take care,
Darlene
DX: 12/6/08
1.4cm intracanicular -Middle Fossa Surgery on 7/1/09 @ NYU. Hearing preserved and speech discrimination has actually gotten better!!   Temporary Facial Paralysis- showing improvement.  1yr post-op hearing test- same 96% speech recognition- yeah!

Tumbleweed

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Re: SBI Surgery behind me.
« Reply #17 on: February 21, 2009, 01:38:19 pm »
Hi, Darlene:

The folks on this forum who have had endoscopic surgery can no doubt better answer your questions, but what I've read is that there is a chance that an artery can be nicked during surgery. Since the opening to the skull is so small, the reasoning goes, it may be difficult to control the resulting hemorrhaging before the patient suffers irreversible brain damage or death.

Again, I wonder how many documented cases there have been of this type of complication during endoscopic surgery. It's such a new procedure that, the last time I looked (over a year ago), there was no hard data on this -- just rumors and innuendo.

Best,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

ppearl214

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Re: SBI Surgery behind me.
« Reply #18 on: February 21, 2009, 01:41:09 pm »
Boomer,

I know its late coming but had to send you congrats on being a postie! :) Well done!

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Darlene

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Re: SBI Surgery behind me.
« Reply #19 on: February 21, 2009, 02:05:29 pm »
Tumbleweed,

YIKES!! That is a very scary prospect, definetly deserves further investigation.  Thank you for the information now I know another aspect that needs to be looked at before making a choice.  It continually amazes me how much information this forum provides.   

Take care,
Darlene
DX: 12/6/08
1.4cm intracanicular -Middle Fossa Surgery on 7/1/09 @ NYU. Hearing preserved and speech discrimination has actually gotten better!!   Temporary Facial Paralysis- showing improvement.  1yr post-op hearing test- same 96% speech recognition- yeah!

allegro17

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Re: SBI Surgery behind me.
« Reply #20 on: February 21, 2009, 05:38:54 pm »
Just an FYI - but Dr. Shahinian says that he has done over 3000 endoscopic surgeries with no fatalities - a few hundred of these have been for AN.
I guess there is a risk to something going wrong in ANY surgery, though...
In any case, it seems like the risk of this is low enough, for me, to consider the playing field equal to traditional microsurgery, but again thats just me!
Also, I believe that the instruments used in endoscopic have some ability to control bleeding, but I don't know the details on that so I'd have to check into it further.  Anyone know anything abut this?


sgerrard

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Re: SBI Surgery behind me.
« Reply #21 on: February 21, 2009, 06:57:36 pm »
I did a little poking around on the Internet on endoscopic surgery. This link gives a nice overview of the whole subject (not its use for ANs):
http://www.webmd.com/a-to-z-guides/features/understanding-endoscopic-surgery

I agree with Laura (allegro17) that modern surgical technique uses cauterization to control bleeding as they cut, and that nicking an artery is not likely to be the main problem. But the above article has this comment, which probably explains more about the reluctance to adopt:

There is a very real risk that surgeons will feel the pressure - both from patients and from hospitals -- to use cutting-edge but unproven techniques before they are ready... Schwartz says that this is precisely what happened in the 1980s, when minimally invasive surgery was first used for operations like gallbladder removal. Patients demanded the new technique, and some surgeons started performing endoscopic surgery after taking a short crash course. "It was a disaster," Schwartz tells WebMD. "Suddenly, you had people dying and suffering horrendous complications from gallbladder removals, an operation that had almost no risk with traditional techniques. It was a terrible beginning for this technology."

Some leading medical centers are now using endoscopic surgery for neurosurgery, including hydrocephalus, so I think it will become more accepted as time goes on. When more surgeons get enough training in it, it should become more readily available for AN patients as well. Meanwhile, SBI or UPMC would seem to be the places to go.

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.

yardtick

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Re: SBI Surgery behind me.
« Reply #22 on: February 21, 2009, 07:54:59 pm »
I had my gallbladder removed endoscopically 4 years ago.  It was a breeze.  Hopefully in the next decade endoscopic surgery will be the norm for AN.

Boomer, congrats and just think you are a pioneer in the brave new world of AN. 

Oh by the way, my Mom was a pioneer in 1963.  She was the first in our city to have open heart valve replacement surgery.  Back than they did not have the meds to cool the body down, she was placed in a tub of ice before she was put out.

The amazing, wonderful world of medicine!
Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Tumbleweed

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Re: SBI Surgery behind me.
« Reply #23 on: February 22, 2009, 12:01:23 pm »

Some leading medical centers are now using endoscopic surgery for neurosurgery, including hydrocephalus, so I think it will become more accepted as time goes on. When more surgeons get enough training in it, it should become more readily available for AN patients as well. Meanwhile, SBI or UPMC would seem to be the places to go.

Steve

I wasn't aware that UPMC also did endoscopic surgery on ANs! It's good to know there is more than one choice of where to get this procedure done.

I've always been a bit confused as to what the difference between endoscopic and arthroscopic surgery is. Does anyone know? They sound very similar.

Thanks,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

mimoore

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Re: SBI Surgery behind me.
« Reply #24 on: February 22, 2009, 01:56:38 pm »
Great news!
I researched the SBI (they also show a video of the surgery on their site) and asked my neurosurgeon about endoscopic surgery. He did not have experience in endoscopic although he did have plently of experience in skull base surgeries. He was not an advocate of endoscopic surgery .... "too blind of an approach" were his words.
I wonder what the success rate is in larger tumours? Is it possible to have it after Retrosigmond for regrowth? Hmmmmmmm ... always collecting more research ...just in case.
Michelle  ;D
Thanks for the post.

Steve wonder what the approach is if the tumour is stuck on the facial nerve? I would assume just as in any surgery that facial paralysis is a concern?
« Last Edit: February 22, 2009, 02:05:22 pm by mimoore »
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

Jim Scott

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Re: SBI Surgery behind me.
« Reply #25 on: February 22, 2009, 04:00:49 pm »
Hi Jim,

I had an interesting consultation with SBI today.  The  most interesting part of the consult was about what is resected and what is not.  The doctor only takes the superior vestibular nerve and nothing else.  This is assuming that only that nerve is involved.  As I understand, translab surgery takes everything in sight from the vestibular, to the cochlear, to an other nerves with the exception of the facial nerve so that motor ops in the face are preserved.   In the endoscopic approach, they only take what they need to take to remove the tumor.  Of course there is the obvious advantage that this procedure only leaves a dime size hole in the skull as compared to a large chunk of skull with translab.  This definitely helps in the faster recovery time.  However, the fact that they leave the other nerves seems to say that there "potentially" is the opportunity of these other stretched nerves to regenerate over time and restore themselves.  In my case, the hearing is gone and I will be SSD.  However, there is the possibility that the trigeminal nerve will restore itself and I will have restoration of feeling in my face.   I know that nerves, given time, will regenerate.  I was in a bad biking accident a few years back and lost nerve feeling in my left hip.  It took between 2-6 months, but I eventually regained feeling in the area of my left hip.  So I know that its' possible.   

I think this is an important difference to note between translab and endoscopic in my opinion. 

Steve ~

Sorry, I overlooked your post last week but just found it and wanted to respond.

As you know, I support endoscopic surgery.  I think you raise some valid points here and I hope the assumptions you're making regarding nerve regeneration prove to be accurate in your case.

At time I was diagnosed and my 'conventional' (retrosigmoid approach) surgery scheduled, I asked my very experienced neurosurgeon (a man in his late 60's) about endoscopic surgery for acoustic neuromas.  Surprisingly, he seemed to be almost totally uninformed about the procedure.   He did make inquiries with other neurosurgeons in his group practice but they apparently just gave him blank stares.  He said that an endoscopic  procedure on an acoustic neuroma would be problematic because the surgeon wouldn't be able to see the tumor.  He also mentioned, as a peripheral issue, that controlling any significant blood loss would be difficult.   That was almost 3 years ago.  Things have changed and endoscopic surgery for ANs is obviously becoming better known and accepted.  The premise certainly seems sound and, as I've stated, were I diagnosed today, I would have to seriously consider endoscopic AN removal surgery.  However, because my surgery went well and I've successfully recovered, I don't feel as if I missed something by not seeking and choosing endoscopic surgery.  Still, I certainly hope your endoscopic surgery goes well and you have a swift and complete recovery.  I'm sure many of us will be thinking of you on March 18th and sending up prayers on your behalf.  :)

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.

LisaP

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Re: SBI Surgery behind me.
« Reply #26 on: February 22, 2009, 04:36:48 pm »
Boomer

Congrats on the sucess of your surgery.  I would love to learn more about "Endoscopic" surgery.  I do not think that my Dr. is familiar with this.  Could you tell me where I could find out more info?

LisaP ;D
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

boomer

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Re: SBI Surgery behind me.
« Reply #27 on: February 22, 2009, 05:53:52 pm »
Hi everybody.

As you can see not to many people are aware of the of the endoscope procedure.  I received a lot of my info. from checking out:  http://www.skullbaseinstitute.com/
watch the video of traditional verses endoscopic and about the Acoustic Neuroma section in particular.  Then I also visited with prior people who have already had this procedure done.

In visiting with Dr Shahinian on the phone one of the main questions I had was the possibility of bleeding.  He did stress as he cuts he also cauterizes which makes the bleeding almost a non issue, and of which I had no problem.  Mine did have to be dissected off a portion of the facial nerve I don't know how and then followed into its intracanalicular portion with no problems. I am 2 weeks post op and I think vs. the translab procedure I'm doing great.  At first I did have a little double vision but it is pretty much gone then 4 days ago I started having a little dry eye problem and the right eye not closing all the way.  I feel this is getting better daily.  I went back to work for a few hours on Thursday & Friday last week. with no problem just the eye thing.  All in all I have no regrets on the decision I made.  I will definitely let you all know If I do start having any goofy problems that might be of interest to any of you considering this procedure.  And, I want to thank you all for the help in my decision making.

Boomer

highlife

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Re: SBI Surgery behind me.
« Reply #28 on: February 22, 2009, 08:40:57 pm »
Folks:
Rather than speculate, why not just go look at the research on the SBI site.  The main study was of about 111 AN patients, with all different sized tumors, etc, and the outcomes of their surgery over about a year and a half.  Dr. Shahinian has been doing these surgeries for more than 10 years.  It's not really new.  A lot of brain surgeries are done endoscopically assisted, but he does them just endocopically.  Check out Dr. S's background, training and experience.  He has developed some of the tools for this surgery. 
AND, one of the best parts is that you can see the whole tumor (unlike retro-sig) because with the endoscope he can look around corners.  It's pretty cool stuff.
Steph
Rt ear AN - 10x6x4mm
dx 9/08
wait

Arasha

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Re: SBI Surgery behind me.
« Reply #29 on: February 22, 2009, 09:56:12 pm »
Hi everyone;

I had my surgery 16 months ago at SKULL BASE INSTITUTE with Dr. Shahinian and I feel fortunate to have done it there. I had no complications and because the procedure is less invasive, I was able to go back to work in 3 weeks. I had an MRI 8 months after and it showed that my tumor was resected completely.
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.