Author Topic: Am I making a mistake to simply accept that I will have hearing loss?  (Read 12461 times)

TR4guy

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Re: Am I making a mistake to simply accept that I will have hearing loss?
« Reply #15 on: August 15, 2010, 12:28:06 am »
Hi, Scott.  If you haven't attended a local support group meeting already, you might want to attend the one scheduled in DC on September 11th.  There's usually a good representation from folks who have had their ANs treated in a variety of ways and at House, Hopkins, and elsewhere.  I think there is more detailed info about the meeting in the AN community section; if not, you can pm me for details if you'd like.

staypoz

Would really love to attend a support group meeting . . . seeing as I'm scheduled for surgery on Sept. 9th . . . somehow I'm doubting I'll be able to make the meeting two days later.   ;)

Let me know when the next one after that is and I'll do my best to be there.
Scott

40 yr old single male
Alexandria, VA
3.5cm AN on right side diagnosed July 2010.

Significant unilateral hearing loss
tinnitus
fullness of ear (starting to hurt!)
Occasional headaches on one side
Some loss of balance when moving

Translab Surgery at House Clinic on Sept. 14th. (2010)
Doing GREAT!

Syl

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Re: Am I making a mistake to simply accept that I will have hearing loss?
« Reply #16 on: August 18, 2010, 11:10:06 pm »
Scott:

Nothing wrong with trying to save your hearing. I had originally opted to have the translab approach to save my facial nerve. I ended up going with retrosig because I thought my 60% hearing was worth saving. However, this put my facial nerve at higher risk. I ended up losing even more of my hearing. I miss hearing in stereo, but I gave it a shot.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

TR4guy

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Re: Am I making a mistake to simply accept that I will have hearing loss?
« Reply #17 on: August 21, 2010, 06:41:41 pm »
yeah. . . we've all got to make our own choices . . . do what is best for each of us personally.

When i first started this thread, I was in a totally different place (mentally) than I am now.


For me personally,  I believe that retrosigmoid has a very slight chance of preserving some of my hearing.
I also believe that it has a very slight increase in chances of having some other post-operative problems . 

I know these are both small probabilities . . . but the real determinant for me is not "what are the chances?"  but rather "what are the possible consequences?"

Consequences:

1  SSD... That will suck, but I think I can deal with it.

2  Facial paralysis, and eye problems. ..  sounds bad but I am encouraged by the stories of people on this forum who manage those problems just fine.

3  chronic post op headaches.....  That sounds just awful.


Yeah, I think I'll take the route that minimizes those last two consequences, regardless of how small those chances are and even if it assures me of having the first consequence.

My personal opinion.

Scott
40 yr old single male
Alexandria, VA
3.5cm AN on right side diagnosed July 2010.

Significant unilateral hearing loss
tinnitus
fullness of ear (starting to hurt!)
Occasional headaches on one side
Some loss of balance when moving

Translab Surgery at House Clinic on Sept. 14th. (2010)
Doing GREAT!

Jeff

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Re: Am I making a mistake to simply accept that I will have hearing loss?
« Reply #18 on: September 08, 2010, 04:14:29 pm »
Well, I am abit of an anomaly, and my experiences are far from the norm, but here are my thoughts after 3 tumor resection surgeries on 2 sides of my head. My hearing was perfect even though I had a very large tumor. So I opted for retrosigmoid. I lost all hearing, but incurred no facial nerve damage. Some tuymor was left behind. The residual tumor was removed via translab. No hearing to save and no facial damage. Other tumor was removed via translab. Again perfect hearing before. Facial nerve snapped during surgery. While I believe that I took my best chances, the fact is, they're still just that. There are no guarantees, unfortunately.

I may offend some folks,but from my perspective, SSD, while frustrating and irritating at times, isn't that big of an issue.

We all make our choices based upon our perceived chances for "success." I agree with your logic.

Best wishes,

Jeff
NF2
multiple AN surgeries
last surgery June 08

Shan1014

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Re: Am I making a mistake to simply accept that I will have hearing loss?
« Reply #19 on: October 05, 2010, 07:51:00 pm »
Hi there. I had a 4cm AN 85% de-bulked last March. I had very little hearing loss prior to surgery, (retro/sub occipital) and ... Very little change with that after surgery. I do know what you mean about being made to feel like SSD may be a done deal but somehow I have escaped so far. Although still not out of the woods yet. Knock on wood! I just completed FSR (radiation) last week but it's holding strong. My doctors felt the Retrosigmoid approach would be my best bet to keep the hearing. I just know if one has to go, I would rather deal with SSD then facial weakness I think... Although I hope I don't have to miss either.

Hang in there. I hope all goes well for you
Shannon
4.1cm AN 85% de-bulked on 3/09/10
Dr. Willis & Dr. Macias- Phoenix Banner Hospital
July 2010 MRI shows fast re-growth
(FSR) Stereotactic Radiation Novalis Tx 9/27/10 5 days
Hearing loss and slight Bells Palsy Left side
Experiencing balance, facial numbness, double vision, headaches, & fatigue

lawmama

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Re: Am I making a mistake to simply accept that I will have hearing loss?
« Reply #20 on: October 26, 2010, 08:25:34 am »
Hi,

I think maybe it is best to expect the worst and hope for the best.

I had a fairly smallish (mediumish?) AN and I went into surgery with normal hearing in my AN ear.  I came out of surgery 100% deaf in that ear.  It was a bit of a shock, but it hasn't been so bad.  I'm thankful for my health, my family, and the outcome of my surgery.  I have made peace with being SSD and most days I don't even think about it.  I am very busy, very active, and my career requires that I listen carefully.  It really isn't so bad. 

Best of luck.  I really hope your surgeon is able to preserve some hearing, but unfortunately, a 3.5 cm AN is pretty large.  If I were you, I would be prepared.  Keep a very positive attitude.

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.

Kathleen_Mc

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Re: Am I making a mistake to simply accept that I will have hearing loss?
« Reply #21 on: October 29, 2010, 03:20:46 am »
Scott: I didn't have a choice in the matter when my AN was found, it was hurry up and get on the table or die! (no nice way to put it). Truth be told I don't even recall being told what I may or may not loose during the surgery, just hope to live to get off the table. Anyway, that being said I was 23 and single and I can relate to the thought you may have about "dating" post op depending on your limitations post op. I think I found the facial stuff the worst in these situations however looking back if someone is gonna judge you on how you look who needs em? (easy to say eh?)
The hearing loss was troublesome in bars etc. 'cause I couldn't hear what was being said mind you it might be nice for the girls to always cuddle up close to talk in the good ear!
Ultimately the choice is yours....if I had to do it over again I likely would have sacrificed the hearing/balance/facial functioning all again if it meant they got it all out and over with!
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Tumbleweed

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Re: Am I making a mistake to simply accept that I will have hearing loss?
« Reply #22 on: November 01, 2010, 03:18:57 pm »
Hi, Scott:

Sorry for just seeing this thread now. I'm no expert when it comes to surgery for an AN; in the end, I chose radiation. But FWIW, here's my take on your situation:

As you probably know by now, an AN that is 3.5 cm is probably too big for radiation treatments. But you might contact Staten Island Hospital to get their prognosis. They do FSR (fractionated stereotactic radiation), sometimes on tumors over 3 cm in size. To my knowledge, they are the only medical center that sometimes performs radiation on operable ANs over 3 cm in size.

I would also contact House Ear Clinic for a free consultation. Dr. Derald E. Brackmann (his email is dbrackmann@hei.org) will review your MRI for free and give his opinion. He developed most of the techniques used in modern-day brain surgery and is an expert specializing in removing ANs. It couldn't hurt to see what he has to say.

Have you had an ABR (auditory brainstem response) test performed? It will tell your neurosurgeon what the chances of preserving your hearing will be. Basically, it measures the amplitude of response to stimuli at several points along the hearing nerve. In brief, a weak response means the nerve is almost shot and won't survive the trauma of surgery; a strong response means the hearing nerve is still in relatively good shape, and that might warrant a modified approach to try to save your hearing.

I would also ask your doctors if de-bulking the tumor, followed by radiation, might save your hearing and reduce the chance of damage to the function of your facial nerve. De-bulking removes enough of the tumor to allow irradiating its remaining tissue; by foregoing scraping every last bit of the tumor off your hearing and facial nerves, your chance of retaining more function from those nerves is increased.

While it's true that the retro-sigmoid approach poses a 10-15% risk of chronic headaches (thought to be due to bone dust from the operation being left behind inside the skull), to my knowledge this risk also exists (but posing a much smaller chance) with the translab approach. The main issue with translab, from my understanding, is that the facial nerve is really in the way of surgical instruments. That is, if you go through the IAC (internal auditory canal) to get to the main bulk of the tumor that lies in the CPA (cerebello-pontine angle), as with the translab approach, you've got roughly 1 cm of facial nerve to traverse along in order to get free and clear of it. If I'm not mistaken, there is a bigger chance of CSF (cerebrospinal fluid) leakage (out the nose) with the translab approach compared to retro-sigmoid, too.

In the end, you should trust the neurosurgeon you end up choosing for the best approach. You are wise to choose doctors who have the most experience in treating ANs. You know the saying, "This isn't brain surgery"? Well, this is brain surgery. You need experts with tons of experience on your team. It sounds like you're headed in the right direction.

Best wishes,
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

Tumbleweed

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Re: Am I making a mistake to simply accept that I will have hearing loss?
« Reply #23 on: November 01, 2010, 03:22:37 pm »
The main issue with translab, from my understanding, is that the facial nerve is really in the way of surgical instruments.
TW

P.S. Of course, I meant "the main issue besides complete hearing loss..." You already know that translab approach always removes the hearing nerve.

Best wishes,
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