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Author Topic: Small AN - deep in canal - options  (Read 12841 times)

another NY postie

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Re: Small AN - deep in canal - options
« Reply #15 on: August 05, 2009, 06:50:48 pm »
Patrick,
I just sent you an PM.  I can't believe you posted this today!  I just booked surgery for Sept 23 with Brackmann this morning and have felt full on anxiety all day.  Not about Brackmann, just about surgery and the unknown.  I have read so many times that once you make a decision,there is a huge relief, but I haven't felt it yet.  I have another auditory test on Friday. I guess even though I scheduled it, I am not 100% there yet in terms of decision...so I amso glad to hear your good news.  Thanks!
Cheryl
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5 mm lateral IAC (impacted?) diagnosed 6-09-09
middle fosa 9/23 HEI - Brackmann/Schwartz
all tumor gone, facial perfect, no ringing
SSD on right side - Rockin' and Rollin'

sgerrard

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Re: Small AN - deep in canal - options
« Reply #16 on: August 05, 2009, 07:50:11 pm »
Hey, somebody has some news here! Congratulations Cheryl on making a date with Dr. Brackmann. You may still find yourself wondering if it is the right thing to do, but if you keep coming back to it, you will know it is. Give it a couple of days to sink in.

Steve
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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.

moe

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Re: Small AN - deep in canal - options
« Reply #17 on: August 06, 2009, 12:12:18 am »
Congrats on making the decision, Cheryl. See wise choice!
You have an AN buddy who will be able to answer lots of questions-Patrick.
Keep posting concerns/angst. We are here for you.
Maureen
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06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

ppearl214

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Re: Small AN - deep in canal - options
« Reply #18 on: August 06, 2009, 05:40:30 am »
cheryl, congrats! Great hands at HEI and will be cheering you on... and yes... you will feel the monkey off your back for the decision-making process... it will happen :)

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

cindyj

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Re: Small AN - deep in canal - options
« Reply #19 on: August 06, 2009, 06:53:35 am »
Hey, Cheryl!  My congrats also on making your decision and setting a date!  I had surgery there (HEI) in November with Friedman - great experience...if one can call such surgery a great experience :D  Feel free to PM me with any questions you may have about the logistics of having surgery on the other side of the country!

Best to you,

Cindy
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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

another NY postie

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Re: Small AN - deep in canal - options
« Reply #20 on: August 06, 2009, 10:31:35 am »
Thanks to everyone for the support!  I haven't even told my family yet (excluding my husband and kids, of course!:)  I am waiting for it to feel real which it hasn't yet.  I am wondering if there is a small part of me that is still in deep denial about this.  I have this hearing test on Friday because I think it has gotten worse but I don't even know what that will tell me in terms of this decision.  I want to go for it for the hearing preservation but if that was an impossible goal, I would just live with it until hearing goes and then have it out.  Since there are no guarantees and no crystal balls telling me the future, I keep questioning myself.  I am taking Patrick's post of the blue as I sign that I am on the right path!
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5 mm lateral IAC (impacted?) diagnosed 6-09-09
middle fosa 9/23 HEI - Brackmann/Schwartz
all tumor gone, facial perfect, no ringing
SSD on right side - Rockin' and Rollin'

Jim Scott

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Re: Small AN - deep in canal - options
« Reply #21 on: August 06, 2009, 01:15:46 pm »
Cheryl ~

Please accept my somewhat belated congratulations on making a treatment decision!  Although you may not feel the oft-mentioned emotional relief yet, you probably will, soon.  Dealing with the unknown is always stressful, so your feelings are normal and natural.  The internal denial is also quite common.  I went through my whole diagnosis/pre-testing/surgery & hospitalization as if it were happening to someone else. Once I was out of the hospital and feeling better, I quickly 're-connected' with my life and was very anxious to regain normalcy, which I did, within a few months.  If you have full confidence in your doctor(s) and know this has to be done, you should find emotional solace before too long.  Besides, you'll have a large cheering section (here) rooting for you!  :)

Jim
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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.

JerseyGirl2

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Re: Small AN - deep in canal - options
« Reply #22 on: August 06, 2009, 04:22:23 pm »
Cheryl,

Congratulations on your decision to have surgery at House! It's an amazing place (and this is not intended to discredit any of the other wonderful AN surgeons in the country). There are quite a few East-Coasters on this forum who've made the journey out to House -- I live in New Jersey and had my trans-lab and BAHA implant procedures there in January 2008 -- and if you search on this forum ("House" and "Seton Hall" are good terms to use) you'll find many, many posts of House patients. You can also click on posters' names, go to their profiles and read through their postings.

Seton Hall is adajcent to both St. Vincent's (the hospital where you'll have your surgery) and House Ear Clinic/Institute -- it's a good place to stay both before and after your surgery. The typical post-surgery stay in L.A. (before you're cleared to fly back home) is about ten days -- some patients stay a bit longer, a few leave a little earlier, but you can rest assured that you won't be released until your doctors feel that you're ready.

If you usually fly coach, you might think about upgrading to first-class for your cross-country flight back home -- my husband and I did that, and the extra space and more comfortable surroundings were much appreciated. Another benefit was not having to wait on line at LAX's first-class security check-in.

Best wishes as your plans proceed and your surgery date draws closer!

Catherine (JerseyGirl 2)
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Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

sgerrard

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Re: Small AN - deep in canal - options
« Reply #23 on: August 06, 2009, 07:24:55 pm »
Quote from: Patrick-OC on August 05, 2009, 08:21:17 am
This is my first post too.

Hi Patrick,

Just wanted to welcome you to the forum. I saw that you also found Lilan on another thread, just missing her at House.

Apparently you have unknowingly helped Cheryl to make the call. Since it is Brackmann at House, you are in safe territory.  ;)

Steve

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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.

another NY postie

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Re: Small AN - deep in canal - options
« Reply #24 on: August 07, 2009, 01:39:25 pm »
I want to thank everyone for all their kind words and pms...it really helps soothe the angst...I did show some additional loss of hearing loss in my test today...mostly between 3000-4000 hrz...anyway, helps me with my decision since I am going downhill with hearing...I am off for a week to hopefully foget about this thing (yeah, good luck, right) ;D
Cheryl
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5 mm lateral IAC (impacted?) diagnosed 6-09-09
middle fosa 9/23 HEI - Brackmann/Schwartz
all tumor gone, facial perfect, no ringing
SSD on right side - Rockin' and Rollin'

Patrick-OC

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Re: Small AN - deep in canal - options
« Reply #25 on: August 07, 2009, 01:45:33 pm »
Steve - Thanks for the welcome.

Cheryl - After surgery, your hearing organs will be full of blood from the surgery, at least mine was.
It felt like i had lost all hearing, felt very full.
I was able to hear a dial tone on the phone though. I think that is the favorite test of the doctors.
It takes a few weeks for your body to re-absorb the blood.
It sounded like crickets at first and gradually the hearing came back.

I know you will have a good experience (well - you know what i mean) at House.
Good luck with it.
Let us know how it all goes.

Patrick
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5mm Middle Fossa removal on 6/30/09
House Ear Clinic & St. Vincent's Hospital
Drs. Brackmann, Schwartz & Stefan

wcrimi

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Re: Small AN - deep in canal - options
« Reply #26 on: August 07, 2009, 08:35:49 pm »
Cheryl,

Congratulations on your decision. Sorry I noticed a few days late, but I've been very busy and haven't checked the forum lately.

May I ask what the deciding factors were in choosing Brackman given that you had seen so many outstanding surgeons on the east coast?

Wayne

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1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

wcrimi

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Re: Small AN - deep in canal - options
« Reply #27 on: August 07, 2009, 08:56:08 pm »
Quote from: leapyrtwins on June 27, 2009, 08:26:54 am
In general chances of preserving hearing with retrosigmoid are 50/50.  70 seems kinds of high.

Just remember that no doctor can guarantee you anything 100%.

Jan  

Jan,

When I first had my consultations both Dr. Post and Dr. Galfinos they both said I had about a 50-50 chance (so did Dr Smouha).  However, Post mentioned that he could give me a more accurate assessment after seeing the result of some additional hearing tests that looked at my hearing nerve.  I mentioned that to Galfinos and he said he generally doesn't bother doing that test prior to surgery because he evaluates the nerve during surgery. I had the test done with Dr. Smouha anyway and then Post upgraded my chances to 70%. I don't know exactly what he was looking for, but Galfinos seemed to agree that my chances could be as high as 70% "depending" on condition of the nerve.

In the end, I went with Post because my ENT had originally recommended him and his record for hearing preservation using Retro is unequaled. Retro seemed like the best option for me.  Of course his record could partially be the result of the cases he takes (maybe only high probability cases????), but since he was willing to operate on me, I felt like I had an above average chance. He exceeded my hopes.

Now if I could just get rid of those "balance waves" that go through my head whenever I'm in motion.... ::)   It's tough almost never feeling normal, but I'm sure you all already know that.   ;)

Wayne
« Last Edit: August 07, 2009, 09:38:24 pm by Jim Scott »
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1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

wendysig

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Re: Small AN - deep in canal - options
« Reply #28 on: August 13, 2009, 05:47:24 pm »
Cheryl,

Sorry I'm a little late in coming to this thread.  My hubby's on vacation and we've been on the go.  Congratulations on making your decision, in my opinion it's the hardest part of this journey.  the next six weeks will fly by.  Try to keep your mind occupied with things other than surgery -- of course I understand your feeling that you could still change your mind.  I did it a couple of times myself but ultimately decided surgery was the right chioce for me and it was.  Although I am SSD and have a slight balance problem, it is still getting better and may in part be from my knee problems.  Hang in there!

Wendy
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1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

another NY postie

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Re: Small AN - deep in canal - options
« Reply #29 on: August 14, 2009, 06:31:52 pm »
I just got back from Michigan - lovely state - I had no idea!  :D  Driving through PA, I had my ear pop!  It was amazing!  Funny how such a little thing can be so thrilling now.  I got the full feeling back within 24 hours but not as full as it had been since March.  I was disappointed that it didn't pop again on the way home.  I told my husband we may have to keep driving through the Poconos just to try to pop it again!

Anyhow, for those of you who reached out as House alumni - I am calling this week for those tidbits and packing list. 

Wayne, to answer your question, I concluded that middle fosa was best for me because of location of AN.  I couldn't find anyone that did middle fosa enough in NYC for my comfort level (Roland does 10-15 a year, Post not at all, etc) - since it puts the facial nerve at risk , I wanted someone who did a lot.  Brackmann does 60 middle fosas a year so I decided to go for that.  If I had retro or trans, I would have stayed local.
Logged
5 mm lateral IAC (impacted?) diagnosed 6-09-09
middle fosa 9/23 HEI - Brackmann/Schwartz
all tumor gone, facial perfect, no ringing
SSD on right side - Rockin' and Rollin'
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