AN Veteran ~ Forum Newbie

[Jen Doane]

Hello,

To everyone affected by the AN experience I wish you all good health, strength, courage and perseverance to overcome this challenge and live life to it’s fullest!

My name is Jenifer Doane, I am a 17 year Acoustic Nueroma “Veteranâ€?.  I’m almost 36 years old. I am married with one child and have a job within the school system.

I was 17 years old when I was treated and diagnosed for a 4.5 Cm AN on the left side.   I was left deaf in my left ear and have significant/complete paralysis on the left side.

I am happy to be a newbie to the ANA forum and I have been completely engrossed in reading all of your entries. 

After my surgery I went on with life as I thought it should be or should I say what society dictated?  I worked, went on to college, was an active community member and citizen, continued with my equestrian hobbies, and I am now married with a 2 year old son. 

I have gone through the last 17 years in denial that I have been put through such a life changing experience and that I have been blessed and burdened with being different. I have built up a wall around myself and I am relieved to be reaching out and networking with others like myself. 

I would love to connect with any other veterans out there to share all the good and the bad about being an “AN survivorâ€?. 

[Joef]

Hi and Welcome!!!
  It's great to hear from some who had AN so young and so many years ago! as there are recently have some young patients on board .. and prove life does go on after AN !!! .. so where are you located? what state? ..

[Jen Doane]

I'm in Northern CA.  My doctors were De La Cruz and Giannotta of the House Ear Institute in LA.

I have a spring in my left eye (overall I have had 3 eye surgeries in the past 14 years)  these were done by Dr. Levine of the Facial Nerve Paralysis Team / House Ear Institute / LA.  I also have a static sling in my left cheek to help lift atrophied muscles this was done by Dr. Aronowitz of the Facial  Nerve Paralysis Team.

There seems to be a lot of new terminology being used.  I'm sure the medical advancements over the past 17 years are awesome.

Are BAHA's only for those with partial hearing loss?  I'm surprised that my DR's have never talked with me about this option......

[Joef]

I saw Dr. Levine serval times while I was at LA ... (his office was packed, it seemed like I waited forever!) I was a lucky one, I never did have the spring put in ... and the last couple of months (I am 10 months post-op), having been putting in fewer drops!... I have my morning drops after a shower, lunch drops, and dinner drops... and thats it!! but I still carry some around with me in case I need a "fix"

the BAHA are for those with NO hearing in one ear .. like I with a tran-lab removal of an AN, lost all hearing on my right side ..
and they have only been available for a couple of years, most places don't have em ..

me and my BAHA
http://image2.frappr.com/pics5/i/20060224/0/f/1/0f14a0e6477b1aa406415e3ad40652661

[Jen Doane]

Did you have your BAHA done through the House Ear Institute?

[Battyp]

Jen welcome.  What is it you do in the school system?  It's nice to know that there is life after AN!

[Jen Doane]

I am the office coordinator / secretary.  With almost complete paralysis on the left side you would think the kids could be hard on me....  However, they have been really great over the years. Kids are polite enough to ask what happened.  Adults on the other hand take the "don't ask it's rude" approach.  Over the past year or two I have been interviewed for other positions within County and the City.  I always get interview(s) but never the job.  Recently I been thinking about my paralysis and if it is becoming a barrier to employment.  I am very secure in my current position with the schools and it is very comfortable for me.  However, I am ready to move on.....

I'm very interrested to learn about others with signifigant paralysis and the social barriers are experienced....

How did the surgery leave you?  Any paralysis or hearing loss? 

[Joef]

They did the BAHA at House and the AN removal at the same time! you should ask them about it !!

funny you should say about "dont ask" most people are like ... I see the same thing .. I also have facial issues ... plus the BAHA box on my head .. and only ONE person has asked me at work since this all happened 10 months ago .(I'm in an office) I know how office talk is .. so I'm sure I was the talk of the month when I was out on sick leave  (even the CIO called 2 times to see how I was) ..

[ppearl214]

Hi Jen and welcome! Great to have  a "long-termer" AN-er like yourself around here. I'm only a baby, since I'm one yr since diagnosis and 2 mos post treat, but you are a true inspiration!  Great to see you here.

(pssst, and watch out for the battywench.  If you got men in your life, she'll come a-knockin!)


*waves hi to Batty!* 

[Kathleen_Mc]

Jenifer: I like yourself am 17 years post-op (almost) from my orginal tumor. I too lost my hearing and facial nerve functioning.
re: BAHA (and maybe someone else can answer this for me) don't you have to have some auditory nerve on the non-functioning side for this to be useful? I do not have any auditory nerve (or any of the 7-10th nerves for that fact) on the operative side. When my orginal surgery was done the surgeon cut them right out....where they come out of the brain there is just short mm stubs....I'm thinking this may be the case for you as well cause I understand that is what was usually done many years ago to help ensure they got all the tumor instead of chance anything.
Kathleen

[Pembo]

I am only 2 years post-op but I'm 38. I can't imagine having to deal with all of this at such a young age but then again maybe it would have been easier in some respects. Who knows.

I have a Baha. My auditory nerve on the AN side was removed. The Baha has been awesome especially in large group situations.