Author Topic: Calling all AN Veterens  (Read 16576 times)

Raydean

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Calling all AN Veterens
« on: June 12, 2006, 04:27:00 pm »
I was just reading Jenifer's post in the "Post Treatment section"  Her post got me thinking.   

How many years has it been since your treatment?

It makes me wonder how much things have changed, yet remain the same.

I had the opportunity in the past to talk to others that was treated in the 1970's and 80's and it's really amazing the stories they share.  Remember this is before MRI.  The testing for AN's were different and you were truly on your own.  I'm hopeful that the veterens that are on this list will share their stories

I truly believe that  the good outcomes that are the norm today are in part due to the ANer's that were treated in years past and the information gain from them .

For the record  Chet will be 9 years post treatment this fall.

Best to all
Raydean
« Last Edit: June 12, 2006, 04:50:34 pm by Raydean »
Do not go where the path may lead, go instead where there is no path and leave a trail.

matti

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Re: Calling all AN Veterens
« Reply #1 on: June 12, 2006, 07:51:53 pm »
I will be 8 years post op this July.  The huge difference I have seen since my treatment and recovery is the amount of information and support now available online. 8 years may no seem that distant, but it was in regards to the internet.  Most of my resources came from the library.  I wish I had this forum available to me back then, as I know my recovery would not have been so isolating. The majority of info I read through was mostly horror stories. My first goal when I got home from the hospital was to write a positive AN story online, even though I had post op complications, I felt so blessed to be alive  ;D

3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

marie

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Re: Calling all AN Veterens
« Reply #2 on: June 13, 2006, 11:55:09 am »
On November 24, 1967 I kept my appointment with  ENT.  He asked questions, did hearing test ("you're right.  You're deaf in your left ear), poured ice water in my left ear ("don't have to do the right ear because you didn't throw up"), sent me for  head x-rays (front, back, both sides).   On  December 6 I saw the neurosurgeon. December 10 or 12 entered the hospital.  Four more head x-rays.  December 14th,  5 hour surgery.  Hearing was already gone so it didn't matter that they had to sever the 8th nerve.  But they also had to sever the 7th nerve as well.  Asked the doctor how big was the tumor and he made a loose fist  : "About that big".  (He didn't have small hands!)  No headaches, no balance problems other than the minor ones I had before surgery.  Started walking as soon as they let me out of bed.  They were very surprised that I didn't require help with walking.  I went home on December 23 only because I finally asked to.  I hadn't  really needed to be there for some time.   Since my face was half paralyzed, I had difficulty talking.  As far as I know, no physical therapy , speech therapy were available.  None were mentioned, anyway.  I forced myself to slow down my speech and enunciate. 

In February, 1968 I had the 7/12 done.  Five months later I felt a twinge in my left cheeck.    Over time my face quit drooping  and at rest looks fairly normal.  My forehead and eye , however, were not helped.  In June of 1969 I had a temporalis transplant.  As a result, I have very little trouble with my eye.  Maybe 3 to 6 times  a yer I have to put in eye drops because of a little dryness (ususally caused by being in moving air or staying up too late).

I had no one to talk to about my condition, etc. until I discovered the ANA in 1984 or 1985.  A group formed in Little  Rock, Arkansas .  We had the second or third symposium .  I haven't been able to attend one since because  of work.
 
We found the regrowth in the '80s because a hospital 60 miles away got a CT Scanner.  I went back to my Kansas City neuro. and we watched and waited for a few years.  Sometime during that period MRIs came into being.  I had a couple of them before the second surgery in 1987.  The hospital stay was much shorter. Again, no headaches or other problems.

In 1991 I felt the familiar slight "spinning" in my head, had an MRI here, took it to KC, and Dr. sent me to Dr. Brackmann in Los Angeles.  Time in hospital was shorter still.  Again, no headaches or other problems. 
I didn't know about radiosurgery until I started reading posts on this forum.   

The only thing I'm worried about  at this point is having a headached problem as a result of removing the right side AN.  Been watching it  with annual MRIs since '93.

Maybe some day they will be able to zap these things  and vaporize them?!





















surgeries : back of head 1967,1987
               translab 1991
               bone reduction 2002
               7/12  1968
               temporalis transplant  1969

Road Trip Dale

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Re: Calling all AN Veterens
« Reply #3 on: June 13, 2006, 12:18:56 pm »
Wow, Marie, what a 40 year odyssey you have had with this stuff!  I for one really appreciate the upbeat attitude you apparently have taken regarding your trek.  I'm only a couple of months since my surgery, which went wonderful, but I can't imagine at this point having to do it a couple of more times. Geeezzz!

You are a great inspiration!
1.75 AN Right Side
Translab 4/16/06
Dr. Charles Leutje and Dr. Paul Camarata
St Luke's, Kansas City, MO

antoinette

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Re: Calling all AN Veterens
« Reply #4 on: June 13, 2006, 12:32:05 pm »
Hi Raydean.
This is a "very" good idea, a sort of survey about the long time results from treatments, any treatments, and/or even non treated ANs like mine. The true statistics that we are not getting because they make one only to sell products, could almost be replaced by that 'survey".
Will you suggest a few questions, like size, date, treatments and outcomes. Or will we describe in more individual words how it evolved.?
Hello to Chet, Raydean, and best regards to you
antoinette

Crazycat

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Re: Calling all AN Veterens
« Reply #5 on: June 13, 2006, 01:27:38 pm »
That's quite a story Marie. Thanks for sharing!! I was 10 in 1967. Seems like the dark ages compared to today. That was the era of Dr. Christian Bernard and the first heart transplant.


Raydean.........I was wondering: Does Chet still have the shunt in? Mine is in permanently.


Paul
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

Raydean

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Re: Calling all AN Veterens
« Reply #6 on: June 13, 2006, 02:48:19 pm »
Marie

1967 I was graduating from High School and Chet was in VietNam, seems like a lifetime ago. 
All I have to say Marie that is an amazing AN journey and you're a pretty amazing lady!!!!
Did i read your post rignt that you 've dealt with regrowth of the orginal tumor and additonally developed a second tumor (bilateral) on the right.  Thank you so much for sharing and giving us insight into the treatments of the past. It's clear that back then the patient had few choices.  You're truly a pioneer that helped lead the way for the rest of us.

Antionette,

So good to see your post and to have you here.  I'm lucky in that I know a portion of your AN journey.  As a long time wait and watcher I'm sure that others on the list would find your journey and the choices you made interesting.   

I'll write you offlist regarding the family,  Chet is doing great, thanks for asking.  You're such a dear!!!!

Paul

Chet still has the shunt, probably will always have it.  I did ask once for it to be removed, but was declined because unsure how much it might still be needed and the possibility of risking more damage in the removal.  On the plus side, it's been almost nine years and no problems.  A few years ago we had an evaluation with a neurosurgeon to make sure there were no problems.  Truthfully we don't think about it much these days.  It's just there.

Best to all
Raydean
Do not go where the path may lead, go instead where there is no path and leave a trail.

marie

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Re: Calling all AN Veterens
« Reply #7 on: June 13, 2006, 04:32:34 pm »
Raydean,

Yes,  the first and second were removed (not sure of the term) at the back of the head.  The third was removed translab.  Dr. B. said the reason it kept coming back was that the auditory canal was misshapen and Dr. couldn't see that there was a piece of tumor root being left behind.  Something else I remember:  the hospital had not yet acquired the tools for microscopic surgery for the first one.  For the 7/12 they had just gotten it.
 In 1993 when I had the MRI to "make sure we really did get it all",they said, "yes, it's all gone on the left, but there's something on the right".  We've been watching it ever since.

In 1967 I was teaching.  In 1968 I finally finished classes for my Master of Education.  I tried teaching one more year but my voice wasn't strong enough. 
surgeries : back of head 1967,1987
               translab 1991
               bone reduction 2002
               7/12  1968
               temporalis transplant  1969

Raydean

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Re: Calling all AN Veterens
« Reply #8 on: June 13, 2006, 04:58:27 pm »
Wow, Marie thats 26 years between AN's  being discovered. Has your Doctor mentioned the possibility of NF2 and without imposing could you sorta give us your age range.   ( I know it's never polite to ask someone their age, but-----)

Thanks
Raydean
Do not go where the path may lead, go instead where there is no path and leave a trail.

ppearl214

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Re: Calling all AN Veterens
« Reply #9 on: June 13, 2006, 05:01:13 pm »
Raydean, Great idea! :)  it's great to be able to know how far the treatments and such have come over the years... and I would like to thank ALL of those that precursor my treatment this year as if it weren't for you all... the technology may not have been available for me. So, as my counterparts in Japan would say, "domo arigato gozaimasu tomadachis" *

Marie... wow. All I can say is wow! What an inspiration you are. An amazing journey, an amazing will.  God bless you and all that you have endured and for a wonderful attitude.

Phyl

(*translation: Thank you VERY much friends)
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marie

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Re: Calling all AN Veterens
« Reply #10 on: June 13, 2006, 05:10:52 pm »
Dr. Brackmann says that I probably have NF2 because of the bilateral ANs.  However, so far I haven't had tumors anywhere else.

Born November 23, 1937  (68 years old).  Found out about the first AN the day after my 30th birthday.  Dr. Schoolman said that I had had it for 12 to 14 years.  I remember at age 16 bumping into walls on my left.
surgeries : back of head 1967,1987
               translab 1991
               bone reduction 2002
               7/12  1968
               temporalis transplant  1969

Jeanlea

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Re: Calling all AN Veterens
« Reply #11 on: June 13, 2006, 05:46:44 pm »
Wow!  What a story!  You are amazing.  I'm curious.  What is a temporalis transplant?

Jean



  In June of 1969 I had a temporalis transplant.  As a result, I have very little trouble with my eye.  Maybe 3 to 6 times  a yer I have to put in eye drops because of a little dryness (ususally caused by being in moving air or staying up too late).



















translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

Kathleen_Mc

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Re: Calling all AN Veterens
« Reply #12 on: June 13, 2006, 07:28:06 pm »
My first resection was done in 1990, that was following the benifit of MRI although it was not necessary as the tumor was already found on CAT. This was after 4 years of mis-diagnoses. I am sure if I had been given the benifit of either test the tumor would have been found 4 years earlier, or at least it would have been seen on the MRI for sure.
The technology for those heading into this journey is certainly much improved both by the use of MRI for earlier diagnoses and in the surgical skill of doctor's, instruments available to them and the introduction and greater use of Gamma etc.
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)

marie

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Re: Calling all AN Veterens
« Reply #13 on: June 14, 2006, 10:08:16 am »
Jeanlea,

Re: temporalis transplant--  A thin piece  of temple muscle ( the muscle in the temple area that moves when one chews)  was sliced almost off but left attached near the left eye.  That small piece was sliced in half so that there were two thread-like pieces still attached.   Those two slices were then threaded through the upper and lower eyelids and sewn together at the inner corner of the eye.  I was not allowed to chew for three weeks until it was healed.
Marie
surgeries : back of head 1967,1987
               translab 1991
               bone reduction 2002
               7/12  1968
               temporalis transplant  1969

mindyandy

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Re: Calling all AN Veterens
« Reply #14 on: October 05, 2008, 05:54:35 pm »

Born November 23, 1937  (68 years old).  Found out about the first AN the day after my 30th birthday.  Dr. Schoolman said that I had had it for 12 to 14 years.  I remember at age 16 bumping into walls on my left.
Marie....wow what a coinscidence....
My birthdate November 23, 1977
Found my AN right before I turned 30....
Been bumping my shoulder into walls for years....LOL
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012