I started a blog.

[JW123]

After encouragement from a family member I set up a blog for family and friends to track my progress.
Fell free to check out the blog at JosephWillis123.blogspot.com

My quick AN synopsis:
I am 24 years old.
I have a 2.0 cm by 2.7cm left side AN tumor. I am getting it removed, via retrosigmoid approach, at the Mayo Clinic with Dr. Link and Dr. Driscoll on Oct 17th. 
I show very minimal hearing loss (small enough it barely registered any different than the right side on a Audiogram)
Although I do have pretty decent (or what I consider decent) tinnitus.


Also, I would be really interested in hearing from someone else that has had AN or is going through AN that is also in their 20's.

-Joe

[Keri]

Hi Joe,
I hope you've found some support from some other 'youngins' on the AN forum. Kaybo was very young when she had her surgery. There was another guy a year or so ago, but I forgot who it was. I haven't been on the forum for a month or so and am trying to catch up on the reading. If you can, try to keep us posted on here as well as your blog - that way new people can meet you.

Take care,
Keri

[hruss]

Hey Joe,

it is Hristina (the experienced posters here remember me) and I was diagnosed AN (huge, no specified dimensions, but I was hospitalized the day after they discovered it because there was no time for wa(s)(i)ting. My brain stem had already swollen and had been s-shaped) at the age of 24. It was at the end of Sept and I have an anniversary at the begging of Oct.

Actually, third time's a charm. This is to say, I have three anniversaries because the first two surgeries were not enough to remove the whole tumor, or at least the doctors in Bulgaria (where I am from) couldn't. So for my third head opening I went to Germany and as a result the last three annual MRI check-ups turned clear. Since my very first surgery till now 4 years have passed and a lot of things happened to me (I really mean a lot) and as a consequence to some of them I was brought to the States where I am residing currently. But all these things made my life speed up so quickly that I didn't remember when these years passed. Everything will slip away really quickly so setting up a blog is a good idea but remember to update it after the first three months (I have one too but it is really outdated. I am frowning at myself now).

Try not to think about the forthcoming surgery. I know it is easier said than done. For example find something that fascinates you and go practice it simply to drift away. It will also give strength to your parents and friends seeing the way you face it and not bringing up the AN topic every single time they see you. The least thing I needed at this one year of surgeries was to meet friends and they to try to console me during the entire meeting, i.e. talking about how sorry they were for me. I needed people to support me, not to cry over my shoulder. This was a good time to realize who cared indeed and who fled away because you were different.

If you need simply to talk, to ask questions or to share frustration with people who will understand you, remember that I, like all the people, I am sure, am here.
 
Take care,
Hrissy

[JW123]

Thanks for the advice.  I did find someone my age to talk with that went though a similar situation, not AN though.

T-minus 2 weeks until the surgery.

Any pieces of last minute advice?

I do wear glasses, I'm guessing with all the bandages stuff it would be hard to wear them right after. Anyone had trouble with contacts right after?

Any suggestions on hospital entertainment? I heard watching TV or being on the computer can be hard, maybe because of the headaches? I was thinking a book on CD to listen too?

I know for everyone it seems to be different but what is there to expect for the first few days? (physically)

[hruss]

So the countdown has started, right? I know that the weeks before are the most frustrating but try to keep yourself busy.

Like a lot of people mentioned TV/ radio/ computer don't work - I mean it is not good for you and you wouldn't like them yourself. That is why they don't have wi-fi in patient rooms  at least in Germany and in Bulgaria they did not.

The first few days after the surgery I was in the ICU then in my room but all the times sedated - so for the first three days I had vague memories of a couple of minutes and then going back to sleep again.

Then I kept moving as much as I can because the vestibular system of my body had to be adjusted and I had to regain strength to do everyday things on my own before being discharged. At the time I did not walk around in the hospital, I played sudoku - I love it! I had my brother from morning till night with me/ or my mom for the first two surgeries in Bulgaria so I kept talking with them or friends came to visit me. In other words, I was never alone. However, if you have your facial nerve damaged, I am not sure how good it will be for the eye to read.

Your body needs to relax as much as possible, devote this time to your body and mind and get used to your "new" self.

take care and please try not to think about it as much as possible,
x