Author Topic: i dont know if i had a stroke or not they say they cut a nerve  (Read 2992 times)

thisisajourney

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i had a 4cm by 2.9 AN I am devestated

moe

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Re: i dont know if i had a stroke or not they say they cut a nerve
« Reply #1 on: May 25, 2010, 08:42:57 pm »
Hi there,
Can you give us more info on your symptoms? I see a previous post about blinkeze that you posted.

There is also the WTT (willing to talk) part of this forum that you may want to call.

Please tell us more. We can help you! (emotionally that is). :)
Maureen
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

opp2

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Re: i dont know if i had a stroke or not they say they cut a nerve
« Reply #2 on: May 25, 2010, 08:46:02 pm »
Well that sure is a big AN. I'm really sorry that you have a tumour and like Moe we're here to help, however we can. Most of the folks on here have been through a lot. Me, I'm pre op so I can only say I wish you strength to handle what has come and is to come....

big ole cyber squeeze to you.

Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

Lizard

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Re: i dont know if i had a stroke or not they say they cut a nerve
« Reply #3 on: May 26, 2010, 09:19:42 am »
Please don't hesitate to ask or vent or whatever you need that's why this forum is here.  More info on your surgery and condition would be great to hear.
Hang in there
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Jim Scott

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Re: i dont know if i had a stroke or not they say they cut a nerve
« Reply #4 on: May 26, 2010, 01:14:24 pm »
Thisisajourney ~

After seeing your screen name, my first thought was, "it certainly is"!

I'm terribly sorry to see that you're 'devastated' post-surgery.  Like the previous posters, I would like to know a bit more about your situation, such as what complications developed during or immediately after the operation, your doctor(s), facility, post-op issues and what you're doing for physical therapy as well as what kind of support system you may have.

We're all involved with an acoustic neuroma in some way.  Whether we're 'veterans' of surgery and/or radiation, going through a period of observation ('watch-and-wait') or simply dealing with a recent AN diagnosis and seeking a path to wellness.   As you probably know, some AN patients have a relatively easy time of it with surgery or radiation and enjoy swift and complete recoveries. Some have temporary problems that eventually resolve awhile some deal with intractable issues - but we all deal with an acoustic neuroma in one way or another and have empathy for whatever you're going through.

These forums exist to supply information, advice and support for those who seek it.  We're not doctors but collectively, our members have a wealth of experience at all stages of the 'AN journey' that they are eager to share with those in need of it, as I suspect you are.  Let us help.  Feel free to ask any question or just 'vent' your frustrations.  We understand - because we've 'been there'.   

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.

thisisajourney

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Re: i dont know if i had a stroke or not they say they cut a nerve
« Reply #5 on: May 27, 2010, 10:16:29 pm »
well i feel that the doc was so not helpful i have to keep researchin things and well inform them i am so mad and yes this site is great

4cm in Pacific Northwest

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Re: i dont know if i had a stroke or not they say they cut a nerve
« Reply #6 on: May 27, 2010, 11:08:29 pm »
"thisisajourney"

WELCOME to the ANA forum. You made it on-line! Yeah- that is SOOH the best step in the right direction.  Way to go! You got through the log in and setting up an account stage - the rest is easy sneezy. I see you have already met some of my fabulous supportive ANA buddies here.

I just sent you a PM.

Feel free to ask any questions and those of us who have been through this can offer you some understanding and empathy (from our own experiences)


Please know that it DOES get better. I too had a whopper 4cm tumor… and for a couple of months, post op there, I could not walk nor knew which end was up… but you know I did get better… and I do not even need naps anymore…

Know that you can come on this forum any time, even in your PJ’s  ;)  or having a bad hair day   ;D  and someone will most likely answer your posts once they are too logged on and see it.

Also know it is totally OK to vent your frustrations here… we all know what the early stages of post-op recovery are like. Don't harbor bad feelings... let it out...

Know that you are welcome here on the forum and you are not alone. It IS going to get better. Some days the recovery seems to take as long as watching a banana slug cross a tennis court on a Pacific Northwest rainy day…  if not longer :-\ … or like watching the paint dry when there is 100% humidity in the air…

Cyber HUGS

Again welcome to the forum!!

Daisy Head Mazy (DHM)  :)
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Kaybee

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Re: i dont know if i had a stroke or not they say they cut a nerve
« Reply #7 on: May 30, 2010, 09:18:34 am »
thisisajourney, my tumor was approximately the same size.  I know how you must feel.  I do not know how recent your surgery was, but things do improve.  And yes, what a journey it is!  The people on this forum are amazing and their words (directly to me or more likely to others) have helped me more than they will ever know.  Keep posting whenever you want to share or vent or whatever.  You will find comfort.  All my best,
Kaybee
2 x 3 x 4 cm tumor removed at Methodist Hospital in Indianapolis 10/30/09
Left facial paralyis/SSD (showed first signs of improvement at approximately 6 months post-op)

Kaybo

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Re: i dont know if i had a stroke or not they say they cut a nerve
« Reply #8 on: May 30, 2010, 03:57:06 pm »
thisisajourney~
Welcome!  I'm sorry to hear that this is overwhelming you right now but trust me, it WILL pass.  I had surgery for a "huge" tumor over 14 years ago when I was 25 and have complete paralysis in my face on the right side.  I also had a stroke so I had to relearn how to do just about everything!  It may take a while, but recovery IS in the future - I have a great life now!  Slow & steady wins the race...
Ask any questions...

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!

satman

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Re: i dont know if i had a stroke or not they say they cut a nerve
« Reply #9 on: June 06, 2010, 09:06:22 am »
i can so relate to what your feeling.
in time things will get better, from my exp anyway.
i had an 8cm with a 17 1/2 hr surgery and 6 months of therapy along with all that comes with it.
if you need to talk feel free to pm me
kicked my little 8cm buddy to the curb-c ya !

4cm in Pacific Northwest

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Re: i dont know if i had a stroke or not they say they cut a nerve
« Reply #10 on: June 06, 2010, 11:31:25 am »
Satman Super 8!

Wahoo you are back!!!!!!! 
We have not heard from you in ages! I have really really missed you... and was wondering where on earth  :-\  you disappeared to. Welcome Back!!!!  :-*

You have been a huge inspiration to me -in the past... I figured if you could get back on the horse after having a 8 cm removed ... then I had to get off my duff, quit pouting about my predicament (which was only half the size as yours) and work at getting better too.

Cyber HUGS to "SUPER 8" from DHM (formerly called "4")

"Thisisajourney" Know that Satman is a great  :)  person to connect with...

DHM

4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

satman

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Re: i dont know if i had a stroke or not they say they cut a nerve
« Reply #11 on: June 06, 2010, 12:08:45 pm »
to my better half- :-* :-* :-*, i'm blushing .
kicked my little 8cm buddy to the curb-c ya !