Hi all,
Wow, you guys are amazing. So fast to respond and wish me well. It actually brought tears to my eyes. Not everyone you talk to about having an AN and dealing with issues they can't see is sometimes very difficult so it's nice to have other An's that understand what you're going through.
I started my AN journey 2 years ago when I was having terrible ear aches (right side) and headaches. My physician at Kaiser (Folsom, CA where I live) kept saying there was nothing wrong with my ear and would send me away. By the fourth time seeing her, I finally said there had to be something because I wasn't imagining this ear problem. She sent me to an ENT who also said there was nothing wrong but would suggest an MRI if I continued to have problems. This back and forth continued for months until I asked to have the MRI done. When they told me it was an AN I was shocked and they the whirlwind began trying to decide what to do. I chose the wait and watch until now. My AN started out at 4mm x 6mm x 6mm which is small but I was also having some balance issues. It is now 9mm x 9mm x 7mm. My hearing has also declined a small amount but decided to kill it now before anymore hearing goes. I also have tinnitis (or whatevr it's called) which is very annoying and very loud in the right ear. It drives me nuts.
At first my doctor at Kaiser suggested I stay in Sacramento and have the GK done. I checked the doctor out on the website at Kaiser to find out that he specializes in back tumors and had only done a few brain tumors. He wasn't about to touch my brain! That's when I started researching and found out that the Redwood City Kaiser had a lot of doctors who did brain tumors and had been doctors at Stanford before joining Kaiser. My Kaiser doctor, Dr. Efron, was great and suggested I consult with Dr. Adler and Soltys at Stanford to check out the CK. That was back in 1006 at which time I decided to wait becasue I wasn't sure what to do and knew that since it was small I had time to research and think about it. That is when my neurologist suggested I look up and join this site. It took my a year to actually do that.
It was after reading all the postings here and reading everyone's experience that helped my make my decision to do the CK. I am so glad I am able to go to Stanford to have it done. From all the postings I've read, everyone seems real pleased with the doctors there. From what I've heard, Kaiser may be in the process of purchaing their own CK machine which was another deciding factor for me. I wanted to be able to go to Stanford and not have it done at Kaiser with someone who hadn't done the amount that Stanford doctors have done.
The mask making was probably to worst for me. I'm not real clostrophobic but I don't like things against my face. I'm also having a problem swallowing sometimes and the mask made that difficult. I'm sure I'll probably take the happy pill or whatever it is they can give me to help. SPeaking of swallowing, has anyone had problems with that? It seems that sometimes it's hard to swallow. I mentioned it to my neurologist who said it could be related and if I continued to have problems to come back. The other day I had several incidents with not being able to swallow that even scared my 16 year old who was home at the time. I put a call into my doctor but she's on vacation this week.
Wow, I think I've just written a book for you to read. I will post again after my CK experience next week. My sister is flying in from Seattle and we're treating it as a vacation for the two of us so hopefully I'll have a great experience and feel like shopping and having fun. Thanks again for all your encouraging words. Having you guys (and gals) has helped me tremendously.
Debbie
