Author Topic: Surgery scheduled! Shands hospital on Dec 14th  (Read 26949 times)

lawmama

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Surgery scheduled! Shands hospital on Dec 14th
« on: November 05, 2009, 09:23:50 am »
I scheduled surgery for December 14th at Shands Hospital in Gainesville, FL with Drs. Antonelli and Lewis.  It was a really tough decision, but in the end I think this is what is best for me.  I will be having the retrosigmoid method to minimize the risks to my facial nerve, and I am at peace with the lower odds of saving hearing in that ear.  That is a trade that I am willing to make.

I actually feel some relief now that I have made a decision.  It didn't come easy, but after research, weighing my odds, and a ton of prayer I am now confident.  The date works because I will have all of Christmas break to recover before the new semester begins in January.

Thank you for all of your advice and support!

Lyn
9mm X 7mm tumor (left side), diagnosed 10-15-09
Retrosigmoid on 12-14-09 by Drs. Antonelli and Lewis (my heroes!)
Shands in Gainesville, FL
SSD, but no facial issues.  Mild tinnitus.

Kaybo

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Re: Surgery scheduled! Shands hospital on Dec 14th
« Reply #1 on: November 05, 2009, 09:28:36 am »
I have always said )since I found his Forum 12 years after my surgery) that the decision making is the hard part - we didn't have to do that because my tumor was so big and I had less than a week between the discovery of it and the day surgery was scheduled (plus I don't think there were as many choices then)!  Glad you have gotten past the tough part of deciding - sounds like you really did your homework!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

jaylogs

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Re: Surgery scheduled! Shands hospital on Dec 14th
« Reply #2 on: November 05, 2009, 11:48:00 am »
Congrats Lyn, it DOES feel a lot better now that you got a date on the horizon, eh?  I wish you the best of luck, let us know how it goes!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

Adrienne

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Re: Surgery scheduled! Shands hospital on Dec 14th
« Reply #3 on: November 05, 2009, 01:01:20 pm »
Congrats Lyn,

I soooo know what you mean about feeling better once you make the decision.  You then commit to it, and start planning and your life feels so much less 'up in the air'.

Having said that........trust me-you'll feel even better that first time you wake up and know that you're on the other side and can start in the recovery process.

Best of luck to you.

Adrienne
3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!

Jim Scott

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Re: Surgery scheduled! Shands hospital on Dec 14th
« Reply #4 on: November 05, 2009, 02:21:45 pm »
Hi, Lyn ~

Let me add my congratulations to you on making the decision to have retrosigmoid surgery at Shands next month.  I've added your date to our AN Treatment Calendar  http://my.calendars.net/an_treatments/d14/12/2009?authenticate=&display=M&style=B

I know this is always both a tough decision to make and a relief to have made it.  As a retrosigmoid surgery patient that had a splendid outcome (hearing was already gone in that ear), I commend you and will certainly be thinking of and praying for you between now and December 14th, along with many others, I'm sure.

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: Surgery scheduled! Shands hospital on Dec 14th
« Reply #5 on: November 05, 2009, 05:30:41 pm »
I will be having the retrosigmoid method to minimize the risks to my facial nerve

It's been a long week, but isn't translab the approach that supposedly minimizes the risk to the facial nerve?

I had retrosigmoid and no facial nerve damage (other than a day or two post op) but once I found the Forum I read numerous posts that claimed retrosigmoid was known for headaches and facial nerve damage.  I felt like an exception to that rule since I don't get headaches either.

Am I just confused here and lacking sleep?

Someone help me out, please.

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

Adrienne

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Re: Surgery scheduled! Shands hospital on Dec 14th
« Reply #6 on: November 05, 2009, 06:09:27 pm »
It's been a long week, but isn't translab the approach that supposedly minimizes the risk to the facial nerve?

I had retrosigmoid and no facial nerve damage (other than a day or two post op) but once I found the Forum I read numerous posts that claimed retrosigmoid was known for headaches and facial nerve damage.  I felt like an exception to that rule since I don't get headaches either.

Am I just confused here and lacking sleep?


Jan-I read that too.  But my neurosurgeon swore that that wasn't the case.  I think you get varied responses depending on which neurosurgeon.  Mine said it was his preference because the facial damage point was a misnomer based on old techniques and/or placement of the tumor.  The experienced ones apparently do not have higher rates of facial nerve damage.  He also said "My patients do not get headaches.  Period."  Has something to do with new techniques (I had heard headaches were caused by bone dust).

Either way-add me to the retrosigmoid no facial nerve damage/weakness and no headaches clan.

Adrienne
3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!

lawmama

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Re: Surgery scheduled! Shands hospital on Dec 14th
« Reply #7 on: November 05, 2009, 06:12:13 pm »
I will be having the retrosigmoid method to minimize the risks to my facial nerve

It's been a long week, but isn't translab the approach that supposedly minimizes the risk to the facial nerve?

I had retrosigmoid and no facial nerve damage (other than a day or two post op) but once I found the Forum I read numerous posts that claimed retrosigmoid was known for headaches and facial nerve damage.  I felt like an exception to that rule since I don't get headaches either.

Am I just confused here and lacking sleep?

Someone help me out, please.

Jan

Ok, this is what I thought, and please everyone jump in if I have the wrong impression here!

From my research translab does minimize risk of facial nerve damage, but there is 0% chance to preserve hearing.  With retro my surgeon is giving me 30-40% (but no guarantees) at preserving "some" hearing.  The risk of damage to the facial nerve is less than Middle Fossa.  I think House has better rates facial nerve preservation for Middle Fossa (maybe because they do it so often).    

I heard about headaches, but I thought it was a fairly low % and usually worse when they use titanium plates/mesh/screws to close the craniotomy.  Is that wrong?  I didn't really pay that much attention because I'm pretty sure I remember them saying they don't use them.   I think they replace the bone and use fat to fill... or something like that.  

Anyway, I'll check into this more.  I thought I was pretty thorough with my research but maybe I glossed over a few things I need to pay more attention to.  Thanks for pointing out some areas I need to research a little more.   :)
9mm X 7mm tumor (left side), diagnosed 10-15-09
Retrosigmoid on 12-14-09 by Drs. Antonelli and Lewis (my heroes!)
Shands in Gainesville, FL
SSD, but no facial issues.  Mild tinnitus.

leapyrtwins

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Re: Surgery scheduled! Shands hospital on Dec 14th
« Reply #8 on: November 05, 2009, 09:56:59 pm »
Translab does usually mean 100% hearing loss; retrosigmoid usually gives you some chance.  Mid-fossa typically gives you the greatest chance of retaining your hearing - but unfortunately isn't available to everyone due to tumor size and/or location.

As far as head "hardware", I have a titanium plate, titanium mesh, titanium screws (as well as a titanium rod for my BAHA) plus belly fat in my head and I don't get headaches.  I think this is just part of the "we're all similar, but all unique" part of having an AN.

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

Adrienne

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Re: Surgery scheduled! Shands hospital on Dec 14th
« Reply #9 on: November 05, 2009, 11:30:11 pm »
Tee hee.  Further to your point Jan.  I have the bone replaced.

More than one way to skin a cat.

(Is that a bad analogy to use on this board? LOL).

Adrienne
3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!

Sobes

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Re: Surgery scheduled! Shands hospital on Dec 14th
« Reply #10 on: November 06, 2009, 12:28:53 am »
Hey Lyn,

   So glad you have made your decision and are feeling more confident. I too have scheduled surgery- for Dec. 22 (only date available)... :(    My doc says he wants to do the middle fossa to preserve most of my hearing on the AN side. After reading this thread I am a bit concerned about the facial nerve/paralysis issue with this approach:(  There are still so many questions I have for the doc about headaches, etc. too :( After reading this I realize how many more things I have to "investigate" before the big day !! Hoping to read lots more input here....so confused...again!

Congrats to you Lyn! Keep us posted :)

Bren~
Small AN, left side, Oct. 22 2009
Surgery Dec. 22 @ UW Madison (wonderful doctors)
SSD (left side)

Sobes

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Re: Surgery scheduled! Shands hospital on Dec 14th
« Reply #11 on: November 06, 2009, 12:59:22 am »
My mom sent me this website and I found it VERY helpful...hope you do to!:)

http://www.michiganear.com/library/A/acousticneuromavid.html
Small AN, left side, Oct. 22 2009
Surgery Dec. 22 @ UW Madison (wonderful doctors)
SSD (left side)

Jim Scott

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Re: Surgery scheduled! Shands hospital on Dec 14th
« Reply #12 on: November 06, 2009, 04:13:15 pm »
Lyn ~

Add me to the list of those AN patients who underwent the retrosigmoid approach surgery.  Like Adrienne's doctor, my neurosurgeon said basically the same thing: "My AN patients don't get headaches"...and I didn't - ever.  I have the titanium plate/screws instead of body fat - and never had a problem, except that it took close to a year to regain full sensation on the 'AN side' of my skull, but it did return.  My brainstem was moved ("just a little" - according to my surgeon) but I suffered no ill effects, i.e. headaches.  My hearing in the affected ear was essentially gone by the time my AN was discovered so I had no illusions about getting it back.  Good thing, too, because I didn't get it back.  Otherwise, I had a very successful AN debulking surgery with minimal complications.  That is simply anecdotal evidence and based on my being fortunate enough to have a highly experienced neurosurgeon (thousands of AN removal surgeries) but I think it bodes well for you, Lyn.

Bren ~  Good information, very comprehensive.  Thanks for the link.

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.

loose screws (tightened)

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Re: Surgery scheduled! Shands hospital on Dec 14th
« Reply #13 on: November 06, 2009, 11:55:42 pm »
Lyn,

Good you got your date set, but I'm finding that once you set your date you realize it's really gonna happen, on this date! Then the waiting raises the anxiety levels to unheard of levels. I've got 10 days to go and I can't wait. You got a lot of days. I guess you'll have a lot of time to get to know everyone here. These people are great. I've joined a couple of forums before but nothing compares to the genuine caring and kindness shown by this unique group of individuals. your in a good place here.

Good luck with your waiting and surgery.
Mike.
47 Y/O. diagnosed AN After MRI. 4X5X7mm within the right auditory canal. Slight hearing loss, ringing in ear, vertigo. Middle fossa with House Ear Clinics Dr Brackmann and Dr. Schwartz on 11-16-09. 6 new tightened titanium screws but no more hearing.
http://mikessurgery.blogspot.com/

nancyann

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Re: Surgery scheduled! Shands hospital on Dec 14th
« Reply #14 on: November 07, 2009, 12:48:35 am »
Lyn:  You are in my thoughts & prayers;  relax now,  just breathe...  everything's going to be alright.
Do wonderful things for yourself ! !   Just let go ! !    Always good thoughts,  Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis