Author Topic: Another Newbie  (Read 7974 times)

sgerrard

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Re: Another Newbie
« Reply #15 on: April 04, 2009, 08:14:21 pm »
I agree with Ernie. To me each place said what their best guess was on the numbers (without knowing what the other place said). The hearing difference suggests they may be talking about different procedures, too.

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.

Dog Lover

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Re: Another Newbie
« Reply #16 on: April 04, 2009, 08:58:41 pm »
Yeah, I'm reading it the way Ernie is. Although I had to go back and read it a few times, to see it that way... :P

Cathy
Cathy
9mm x 3mm Left Side AN
Mid Fossa Aug. 21, 2008
Dr. Gantz / Dr. Woodson
Univ. of Iowa Hospitals and Clinics
No facial issues, hearing saved, I keep active and feel back to normal.

GARZAP

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Re: Another Newbie
« Reply #17 on: April 04, 2009, 09:00:39 pm »
Sorry folks if some were confused.  How Ernie interperted my post was correct.  What I wrote is my observation of what I've heard from doctors, what I've read on many internet sites regarding acoustic neuroma, and from many different hospital websites, and from this forum......It's how I make my choices; pros and cons  :)  

Peggy
Peggy
Less than 2 cm L AN discovered 02/09 on MRI due to noticed hearing loss.  No other symptoms.  Surgery 4/14/09 Drs. Friedman, Swartz, and Stefan of House Ear Clinic, LA,CA....my heros.  Retro surgery, no loss of hearing or facial nerve or any complications so far (ten days post op)

Kaybo

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Re: Another Newbie
« Reply #18 on: April 04, 2009, 09:08:26 pm »
Cathy~
Love your new picture! ;D

K
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!

leapyrtwins

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Re: Another Newbie
« Reply #19 on: April 05, 2009, 11:06:01 am »
Thanks for the clarification, Peggy.  I feel much better now  :)

For a while there you really had me going.  While I realize the docs at House are good, I don't want anyone to think that they are the ONLY decent option out there.

As we all know, there are many, many wonderful docs out there who treat ANs.  I had two stellar ones myself.

Jan

Cathy -  I agree with Kay; very nice picture.  I like Marci's new one also; forgot to tell her.
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: Another Newbie
« Reply #20 on: April 06, 2009, 03:04:18 pm »
Hi there.  I was diagnosed yesterday with AN - left side.  Saw a neurosurgeon today and was told my AN is large and really pushing into my brain.  This threw me for a loop because my symptoms have not been that severe.  His concern is my preserving my facial nerve.  Obivously, my hearing will be gone too, but I expected that.  50% chance of facial paralysis.  If this happens, is there any chance, over time, of recovering anything in my face?  I am still not completely sure this is really happening to me.  I took a nap today and when I woke up I thought it may all be a dream.   :'(

Alicia,

So, I'm late coming in, but welcome to the forum anyhow.  You've seen the welcome wagon already, but let me add my welcome as well.  Being 38 and 2 kids (4 and 8; at the time of diagnosis they were 3 and 7) and one who had a relatively large AN, I know where you are coming from.  I would suggest that you make it crystal clear to the doctor that facial problems are a chief concern of yours and that you'd rather them leave some behind and radiate later versus risking permanent facial problems.  Any temporary weakness will be just that, temporary, BUT it takes months to get better, not days.  Historically, any facial weakness as a result of nerve trauma during a surgery will take quite awhile to resolve themselves.  Keep in mind that I was told by my doctor that they wouldn't say that any weakness was permanent until at least a year or more after surgery.  That should give you an idea of what they mean by temporary weakness.

If you make it absolutely clear to your doctor what your chief concerns are, then you stand a better chance of getting what you want.  Like you, it was a concern to me and I told my doctor the same thing.

This is an exclusive club to which you now belong.  Almost everyone here has been where you are now and can help with their collective insights. 

If you feel up to it, read my story (link provided below in my signature).  I had a very long surgery for my big tumor and had many ups and downs after surgery.  Today, while I'm not 100% back to "normal" after surgery, I'm settling into my "new normal" and doing quite well.  I trust that you will also.  This site is a treasure of good information from those that have been there, done that..  The people here are amazing and each one has something to offer.

Welcome to our little club...

Regards,
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/

"I must be having fun all wrong!"  - Roger Creager

Dog Lover

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Re: Another Newbie
« Reply #21 on: April 22, 2009, 09:44:12 pm »
Kay and Jan,

Ahhh....thanks!! (it only took me about 20 tries to get one that I didn't think looked too bad!)   ;D


Cathy
Cathy
9mm x 3mm Left Side AN
Mid Fossa Aug. 21, 2008
Dr. Gantz / Dr. Woodson
Univ. of Iowa Hospitals and Clinics
No facial issues, hearing saved, I keep active and feel back to normal.

calimama

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Re: Another Newbie
« Reply #22 on: May 16, 2009, 05:59:14 am »
HI...

Sorry I am saying HI so late... Life has been a little hectic...

We can all feel your pain, fears. I was almost 39 when diagnosed, with a 1 year old at home. I too had a fairly large AN, but little symptoms. It was a horrible 4 months of being diagnosed, worrying, meeting with docs to discuss options, making a decision and going for it. I can understand your concern for your face, and know this is hard for everyone... us ladies who think we look pretty good especially!

I think you will find there are many experiences here, some better, some worse, but most/all seem to work out in time, but know that you will probably take some time to get back to normal, whether you have facial issues or not (and this is not a sure thing, even with a larger tumor). I hope you are one of those who breezes through and does have to deal with any facial issues (although having gone through all of this in the past year, i feel strongly that is better to look bad (within reason) and feel good, than the other way around. I also like to think of my journey as getting a little better everyday, much preferred to something that gets worse everyday!

I am glad to hear you have kids (puts life in perspective) and a hubbie (a good supportive one i hope!). These things made a world of difference for me.

I am now nearly 1 year post surgery and VERY pregnant (7 months) with identical twin boys. I did have some bumps in the beginning (the worst was double vision, which totally resolved by month five... before that i patched the dodgey eye), and temporary facial paralysis (which did not really start to recover until around month 7), which is still a work in progress, but i reckon i am about 70% better. I know from many of the wonderful people on this site that recovery can continue for a few years, so i am patient and grateful for all good things that come my way.

I am sure you will get the best care possible and you will find that the voices in your head (screaming "tumor") and tears will lessen as you go forward, and soon you will be on the other side of this and that is a far better place to be... on the road to putting this behind you. You will be fine. Be strong, be positive, be thankful, be patient.

Good luck.
Trish in Toronto, Canada
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

TOM101

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Re: Another Newbie
« Reply #23 on: May 25, 2009, 08:38:11 pm »
talking about hours and time of recovery, the skullbase institute in los angeles does an operation the size of a dime with a much faster recovery. just another option. endoscopy.

 


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