Newbie AN and very confused :(

[wendysig]

Hi Greg and welcome,
I think you will find this forum a wonderful source of information and comfort.  I don't have a lot to add as you have already gotten a lot of good advice and information.  I did know about the possibility of endoscopic treatment, but like Jan was only aware of SBI as a place that offered it.  I didn't want to travel that far and wasn't sure how good an option it was for me.  At the time I was diagnosed, I had 80% speech discrimination and I'm pretty sure, that like translab, endoscopic treatment causes you to lose whatever hearing you have left, but I could be wrong.  At that time I was hoping to save the hearing I had left -- also none of the surgeons or radiation oncologieists I saw mentioned the endoscopic option and I failed to bring it up myself.  As it turned out, I had two huge hearing drops pror to my surgery and ended up being SSD anyway.  Not a huge deal since I just had BAHA surgery (BAHA is a hearing implant as Jan mentioned)  and will get my processor in about three months. 

You should find out how large your AN is and what options are open to you.  I can't answer your insurance questions, but hopefully they will be answered soon by someone who can.  As Kaybo said, you are going through the hardest part of the AN journey right now.  Diagnosis and treatment choice are the hardest part -- once you make your treatment choice things seem a lot better.  Do your research and get as many opinions as you feel you need to be comfortable with your choice.  Feel free to ask as many questions as you have and post as often as you want or need to, we will be here to suppport your however we can.

Best wishes,
Wendy

[Debbi]

Hi Greg - and welcome!

I am sure you will be hearing from some of the other folks in the Oregon area, but wanted to also give you a shout-out from the East Coast (I see Wendy beat me to it!)  I encourage you to go to the local AN meeting that Steve mentioned.  You'll find that the people who get ANs seem to be particularly nice and helpful!

You might want to send a PM to JerseyGirl (just do a search for her).  She had endoscopic surger 18 months ago at SBI.  That was her second surgery (she is one of the rare people who had a regrowth 20 years later).  She was very happy with the results at SBI and I am sure she would be happy to share some of her experiences with you. 

I think you are at the most overwhelming phase of this whole process.  I can remember feeling completely freaked out at first, and totally overwhelmed. The best advice I can give you is to take your time doing your research and get as many medical opinions as you need.  And, definitely, talk to other people who've gone through this - I think you will find that we are all happy to share our experiences.  Keep in mind that you are NOT alone.

Keep breathing - that yoga breathing is going to come in very handy for you!

Debbi

[Jim Scott]

Hi, Greg:

I'm sorry to be tardy to the welcoming committee but this was a busy day for me. 

I trust you'll find a satisfactory approach to addressing your AN and within a few weeks, feel much calmer about the situation.  Although non-invasive irradiation may well be a viable approach for you, endoscopic surgery is quite new and not readily available but it does seem promising and worth looking into.  HEI is great but know there are many well-qualified doctors around the country who regularly perform AN removal surgery.  My neurosurgeon isn't famous but he is highly respected in his area and did a fantastic job with my surgery.  Beyond these comments, I can't add anything truly substantive to the previous messages so I'll simply wish you all the best as you begin your journey with an acoustic neuroma.

Jim

[Sue]

Hi Greg,

Welcome from a fellow Oregonian.  I am currently living in Vancouver, Washington, but I'm still an Oregonian.  We visit Corvallis often because we have family there. 

Sorry you are in our AN community now, but we're a nice bunch and hopefully helpful to you.  I was treated at Providence in Portland at their Gamma Knife Center.  There is now a Cyber knife at Salmon Creek Legacy Hospital here in Vancouver.

Take care,

Sue in Vancouver USA

[LisaP]

Hi fellow Newbie,

I was dx March 08 with a small AN right sided.  I am going for my third MRI on Feb 4, 2009.  I'm watching and waiting for now due to the advise of a Dr. McKenna at the Boston Eye and Ear.  I'm from Massachusetts.  Again as everyone has said, take a deep breath, take a step back and refocus.
I too was overwhelmed, but this forum has been wonderful.  Do as much research as you can and when it becomes overwhelming take a break from researching and focus on something else like your family.

I am nervous about this upcoming MRI because my symptoms has gotten worse since August of 08.  I suffer from dizziness, balance issues, fatigue, and some facial and ear pain along with headaches daily.  I don't mind being on w&w, because I still have not made up my mind on what to do.  So again when I become overwhelmed, I just try not to focus too much on my
AN and try to focus on something else, like my family.  Email me if you want to talk more and we can even talk by phone is you want.  I'm a lot older, I think, then you.  I'm 46, buth when it comes to AN's, age does not matter.

Good Luck

LisaP