Author Topic: Lost with lots of questions  (Read 6757 times)

leapyrtwins

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Re: Lost with lots of questions
« Reply #15 on: May 03, 2008, 11:19:57 am »
Lori -

I think the "Operation" game is a good analogy - but I'm thankful my nose didn't light up  :o  The docs may have been rolling on the floor laughing too hard at that point to finish my surgery!

Carrie - 

the info from the ANA is very helpful - I didn't find out about the ANA, this forum, or the information until I was post op, but wish I had discovered it all earlier.  Thankfully my doctor was great about taking the time to explain everything to me - and to his credit, lots of times (since he realized how shell-shocked I was upon my diagnosis).   I always try to mention the literature to newbies because I think it's very easy to understand - and very informative.  I think "Daisy" mentioned that the literature is free if you become an ANA member, or a small fee if you don't. 

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: Lost with lots of questions
« Reply #16 on: May 03, 2008, 04:37:51 pm »
As my neurosurgeon explained it, the sensors attached to my scalp during surgery (that required tiny shaved spots, ruining a perfectly good haircut) send tiny electronic signals during the operation.  If the doctor's scalpel comes too close and a nerve is disturbed, a signal triggers a visual and audible signal and the surgeon will stop the surgery.  In my case, a nerve-monitoring specialist was brought in (from Pennsylvania) to perform this task and he assured me, just before I surrendered to Morpheus, that he wouldn't let my neurosurgeon do any damage to my facial nerves, as this was a major concern for me.  He was true to his word.  No facial paralysis or serious problems post-op and what little facial irregularities there were (my smile was off a tiny bit) resolved within six months.   

I assume that nerve monitoring is 'standard procedure' for AN surgery now but before going into surgery, I would verify that with the surgeon.  I believe it is vital for both patient and surgeon. 

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: Lost with lots of questions
« Reply #17 on: May 03, 2008, 04:48:50 pm »
Jim -

thanks for clarifying how nerve monitoring works.

And great point - patients should remember to verify monitoring with their surgeons - it's not a good idea to just assume things when signing up for brain surgery.

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

Pooter

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Re: Lost with lots of questions
« Reply #18 on: May 05, 2008, 11:33:05 pm »
Thanks for the explaination on the nerve monitoring, Jim.  I, too, wasn't sure how it worked.  My appointments with my surgeons all happened too quickly for me to even know to even ask about nerve monitoring.  In my first appointment, the doctor offered up to me that they did nerve monitoring.  I can only assume that it's "common practice", but I certainly wouldn't take that for granted for those that are still deciding on treatment and interviewing surgeons.

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/

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Melissa778

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Re: Lost with lots of questions
« Reply #19 on: May 06, 2008, 06:00:47 am »
My doctor was one of the doctors inviolved in designing and creating the nerve monitoring tool they use in surgeries today.  I believe there is some info on this on my docs website www.michiganear.com.  I see Dr. Jack Kartush, I saw him yesterday for my Pre-Op appt and he travels frequently to teach and aid in the use of this monitoring device and will be traveling to Stamford today.  It certianly helps my comforst factor knwoign he helped create this device.  As Lori said, I beleive his explanantion was it is somewhat liek the game "operation".  I beleive the device alarms when the surgeon is in dangerous territory.

Melissa
1.6cm X 1.6cm diagnosed Jan 30 2008
Translab Surgery scheduled for May 15th with Surgery went well, got ALMOST all of it.
GK to zap the rest on 10/22/08
2010 MRI showed no new growth tumor measuring at that time at 1.1 x .4
2011 Holding steady
2012 new growth 1.7 x .7 :( :(

HeadCase2

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Re: Lost with lots of questions
« Reply #20 on: May 06, 2008, 06:37:44 am »
  If hearing preservation is being attempting, they can also monitor the hearing nerve during surgery.  I had a pre-surgery test to see if my hearing on the AN side side was too far gone to monitor.  For the test, they had a little speaker in the AN side ear, that "thumped" periodically, and the physiotherapist monitor person tried to see the "thump" on a response curve from some surface electrodes.  If hearing is working, the physiotherapist can see the "thump" stand out from the background activity picked up by the electrodes.   This monitoring during surgery can be used to warn the surgeons that they are affecting the hearing nerve.  In my case, my hearing was already to far gone (-70db) for this monitoring to work.  I don't know if this is "standard procedure" for all AN surgeries attempting to save hearing on the AN side, so it would be a good thing to ask about.
Regards,
  Rob
« Last Edit: May 07, 2008, 11:33:38 am by HeadCase2 »
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

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Debbi

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Re: Lost with lots of questions
« Reply #21 on: May 06, 2008, 08:02:06 am »
Hi R2 -

Welcome to our little club - the one no one really wishes to be a member of at first. 

I just had translab surgery last Weds and am doing pretty well.  SSD on the right side, which I knew would be the case.  So far, I am doing okay with that - although I haven't been in any really challenging environments yet.  I did come out with some nerve damage to my face - temporary, but annoying.  I know it will eventually get better, though, and I am going to focus on positive outcomes.

You will learn much from reading through the comments on this forum - just remember to pace yourself as it can be overwhelming at times.  Also, be sure to ask your medical team as many questions as you want - they should be happy to field any and all questions.  I was emailing my surgeons right up to the day before my surgery with questions.

Take some deep breathes and don't hesitate for a moment to reach out to people of this forum for questions, support, etc.  You've found a wonderful group here - I'm sure I wouldn't have gotten through this nearly as well without this awesome support system!

Debbi - 6 days post op in NJ...
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com