Is anyone familiar Acoustic Neuroma?

My Step-father was recently diagnosed with this, and has a 1.5 cm tumor near his ear.

It sounds like he's going to go for the radiation therapy instead of surgery. I was just curious if anyone knew anyone who had this kind of tumor and their experiences with the treatment.

I know my step-father has done a ton of research (he's a pharmacist at SB and knows a lot of people there and can't make a decision about anything without exhausting every opition) so I'm kind of asking more for me, since everything he/my mom were saying kind of came out like jibber jabber after I heard the words "brain tumor."

Thanks.

Re: Is anyone familiar Acoustic Neuroma?

Deb, this is similiar to where mine was and I had to go the radiation route. Do you know what type of radiation? how often and how long? If it's similiar to my treatment I could talk your ear off in my experiences.

Re: Is anyone familiar Acoustic Neuroma?

I believe my mom said he was going to get radio surgery with a gamma knife? She was going through all the options that he had, and honestly I got kind of overwhelmed with all of them, but I'm pretty sure this was the one she said he was going with. Apparently it's a one time only treatment.

Are you familiar with this type?

I think the other one they were looking at was where they put some sort of helmet type thing on his head and it's over several sessions. But she said it might not hit the same spot every time since the helmet could slip. Fortunatly, the tumor is fairly small (1.5cm) so I guess that's why it could be more difficult to pinpoint?

I'm trying to read up on it, and it's a bit more clear, but very technical.

ETA: Thanks so much for your help, Deb

Message edited 2/18/2008 9:49:11 PM.

Re: Is anyone familiar Acoustic Neuroma?

Deb I love you and I am sorry you and your family are going thru this. I hope you do not find this post to graphic, I am simply stating what I know.
I do know a bit about gamma knife. What he will have on his head is called a halo. It get's screwed into his head and he will be put into the radiation machine where they will take multiple images of his head and do what they call a "mapping." Mapping takes hours where he will just have to wait, with the halo on his head. I had to have a mask made for mine and it was custome made for my head and each day I was put in and then my head was screwed down into the metal table I was laying on. On my chest I got my first "tatoo" which is really just one small drop off ink (If your a fan of friends I always joke that it's like phobe's tatoo when she chickened out and then tells people she got one and it's the way her mom sees her from heaven...sorry trying to add a little humor for you). The radiologists take hours and hours and hours mapping this out to itties bittiest smallest medical and scientifical number possible so that when your dad goes back under that machine that gammeknife goes precisely where it needs to go.
I believe that if you do some research a hospital in Seattle Washington (I think, I know I remember it being a west coast state).

This is a very successful type of radiation and is becoming the "favored" (if you can even use that in these situations) because they are the quickiest, have the least amount of side effects and most importantly are leading in success rates right now.

My friend Laura was just told she needs to get one and I was in the office with her, she is getting it done this wednesday and I will be there so if there is anything you want me to take note of I can.

Also, while the doctors are mapping your dad will stay in the facility and friends and family can be with him but I do believe he will be on morphine for a lot of after the gamma the screws of the halo are taken out he stays in recovery for a while and thanks to lovely insurance will more than likely be out of the hospital within 23 hours.

Believe it or not this is all off the top of my head, If you want me to do some research on some of the cancer sites I post on I certainly can. Also, makes sure your dad is comfortable, make sure he gets a second or even third opinion, at the same time be timely, and last but not least give your dad some extra love if he's anything like me he is putting on a brave face but breaking and scared on the inside.

Re: Is anyone familiar Acoustic Neuroma?

Thank you so, so much. I think my parents were trying to make it sound as simple as they could last night when they were talking to me. I appreciate you telling me more about the procedure.

Also, my step-father turns everything into a big joke, so that also makes getting the whole story difficult. They (and the website) made it sound like he'd be in and out in an hour. I'll have to call them back when I'm not so overwhelmed with all the doctor speak. They kind of made it sound like the worst that would happen with this procedure was deafness in the ear with the tumor.

I know that he's been in contact with several doctors from around the country (at UVA, in Philadelphia, etc...) so I think they did all their research before they decided to tell me.

The info I saw was on the AN website, and it was the very technical stuff... I'll probably do some more this afternoon.

Thank you so much for all of your help. It really means a lot to me. And best of luck to your friend who's going in for the procedure this week.

Deb

PS I'm sorry if I'm sounding kind of unemotional with all of this. I think it's my way of keeping myself from falling apart.

Re: Is anyone familiar Acoustic Neuroma?

I have no advice for you Deb just

Re: Is anyone familiar Acoustic Neuroma?

Re: Is anyone familiar Acoustic Neuroma?

Thanks Azad

And thanks so much for all of your help, Deb! I may be asking more questions in the next few weeks and would really appreciate any help/advice!