ANA Discussion Forum
General Category => AN Issues => Topic started by: calimama on May 28, 2008, 12:10:52 pm
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Just curious about whether people have run into others out there with ANs (i.e. people in our lives who we have not met directly because of an AN).
We had friends (my hubbie's best friend actually, and best man at our wedding) over for cards last Friday. We broke the news about my AN diagnosis and fast approaching surgery. Turns out his sister (also in her 30s) was diagnosed with an AN a few years back (and had radiation). I even met her at his 40th birthday last December. Cali as kind of clingy that night and the only person who she would go with (other than me and hubbie) was this sister!
If these things are so rare... this is quite a conincidence!
Trish
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Hi, Trish:
As you know, AN's are relatively rare. However, there was a lady (probably in her early forties) that attended my church (before I had my diagnosis) who had an Acoustic Neuroma some years earlier. Unfortunately, she suffered with facial paralysis and I was told by some people close to her that she had some severe post-op issues that put her a nursing home for a time. I never had more than a casual conversation with her and we never discussed Acoustic Neuromas. She has long since moved. Frankly, although I might have liked to discuss AN's with her, because she had such a poor post-op experience, I might have been hesitant to compare us in any way as my outcome was apparently quite a bit more successful than hers. Still, I might have given her some nerve graft information and tried to encourage her, given the opportunity. I never had that opportunity, but I can say I've met someone who had an AN.
Jim
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Right after my surgery there were two separate friends of mine who knew someone who also was diagnosed with an AN around the exact same time mine was diagnosed. I don't think these are so rare. Also, recently on the news here in Jacksonville they mentioned a town where there was a large # of brain tumors. Of course I missed it and did not find out the city, did anyone else hear about this report and if so, the city identified with the large % of brain tumors?
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Trish~
I know 3 other people here in my relatively small town. One of them was my cousin's teacher & her mom put us in touch a number of years ago, right when she was diagnosed. The 2nd is a lovely older lady,Marsha, who now goes to the same lady (Pam) I go to for my hair. I have been going to the same lady since 8th grade and she really doesn't take new people. Marsha called her b/c a friend used her and she wanted to go to her too. When she called, she told Pam that she would understand if she did not want to take her b/c she had had brain surgery (scar) and her face was paralyzed. Of course, Pam immediately thought of me and told her that she had another girl that had that! She got us together. Marsha does not drive & she has public transportation bring her pretty early (and she folds & puts up all the towels for them - I told her she could come to my house!) on day I always go so we can chat! We have the AN hour!! The 3rd is Kendie's gymnastics teacher -- she is a Wait'n'Watcher and in TOTAL denial!! She is the only one I have known BEFORE they have had surgery. Every once in a while, I write a note to someone's uncle (or whomever) that has an AN or brain tumor. OK, I don't know if that is what you wanted to know...
K
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Right after my diagnosis I went to see a lawyer about writing a trust. Since part of the trust was deciding who would have custody of my minor children in the event of my early demise, I mentioned my AN diagnosis (even though I knew it wasn't cancerous). He told me that his brother had an AN a few years ago, had surgery, and was fine. He assured me that I would be fine also.
Kind of ironic.
Jan
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My first encounter was at the AN support group 2 weeks ago Sat. in Sugarland Tx. A woman that had had her surgery 12 years ago was surprised that there were 12 of us there. Like she said she though that AN were very rare.
I felt very welcomed
I also felt good about myself and my looks.
eve
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I know this is different, but I was thinking about this the other day. Right around the time my AN, was discovered,I learned two women on my block have MS. Completely different, but still neurological problems. Makes you wonder if there's something in the water, doesn't it?
Wendy
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The numbers go something like: 1 in 100,000 people will get diagnosed with an AN each year. Over fifty years, that means 1 out of 2000 people will get one. So if you meet or come in contact with 2000 people, your chances are pretty good of meeting someone who has one. We have probably met more than we know about.
I had the experience of meeting someone who was single-side deaf (SSD), on the trip I made to California to get Cyberknife. That was the first person I ever met who was SSD, and it was three days before I got zapped. She did not have an AN; she lost her hearing in one ear in the span of two weeks, with no real diagnosis other than "some kind of virus."
It is interesting how unaware I was of such things before diagnosis...
Steve
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I worked with a woman who had SSD, but I didn't know she had that until a year or more of working with her. She got it as a child, after diving into a pool and it did something to her ear. And I met a lady who also had SSD, and this was caused by a virus. She just woke up one day and was deaf in one ear. Kind of scary huh? I had an appointment for a facial a year or so ago and the receptionist had a friend who just had surgery for an AN up at OHSU. That's the only other person that I've heard of, besides coming into contact with ANA people, who have had this.
AN's are rare, but not extremely rare. I thought of it this way. The end of last summer, the local AN group had a picnic at somebody's house. I wasn't able to go and I don't know how many people were there, but, the fact is they were able to meet at somebody's house and be in the back yard for a picnic. Now visualize all of the diabetics in Portland/Vancouver area meeting for a picnic. Hmmmmm. Better have a really, really big back yard! ;)
So, compared to a lot of other conditions/diseases, Acoustic Neuroma is not very common.
Sue
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My friend works with someone who also had AN surgery recently, I joke with him saying he's nothing but a "bad luck" charm. When I was initially diagnosed my wife asked around in the hospital that she works at and one of the radiologist's spouses had surgery at House several years ago....it's a small world.
Joe-
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When I went for my pre-op appointment with my neurosurgeon, he told me there was a young lady in his office that had an AN and the same type of surgery (retrosigmoid)I was going to have. He offered me the opportunity to speak with her. She was in her late 20's and had a 4cm removed (mine was 2+cm). Hers was discovered at a routine eye exam--she had no other symptoms except that she began occasionally drooling out of one side of her mouth. I was relieved to meet someone who had the same surgery, and a great result. She was back to work in 3 weeks.
I also have a friend that has a friend that had GK on one several years ago, but we've never met.
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All the way in New Zealand, I reached out to the amazing members of this forum to find some answers and ask questions, and Mama R (aka:Ohio Also) responded. Was a good sign of strenght for me as I read she had her surgery in Cincinnati. My whole family was gathered in Cincinnati last weekend for my Gram's 94th birthday. So it was a good thing just to read - and hear from again - someone in Cincy familiar with this whole AN thing.
Also, my sister-in-law's family in Cincy are family friends with Dr. John Tew, who sits on the ANA Board. So I have forwarded my diagnosis and doctor information to him for review and hope to now only now have someone close by my family can call on for questions, but another connection and source of information for me.
This world is getting smaller!!!
Anyone notice their spelling and typing skills slipping during the wait for surgery?