New to the Discussion Forum

[Quailruner]

Hello to everyone,
I know there is a lot of information on this site. Overwhelming at sometimes; but it is great to have this info at your fingertips. I have a 1.2 AN as of Oct. 06. I have been playing the waiting game and monitored it for about a year. It has grown about .4 in since Oct. of 05. I was seriously thing about surgery, but now I am getting chicken, and opting towards radiation treatments. I am dealing with Dr. Syms at Barrows in Phoenix. I am still undecided, but I do not want to wait any longer to see that “thing� grow anymore.

Mixed feeling I guess.

[Battyp]

Hi and welcome!
Suzanne had treatment at barrows.  I'm sure she'll be along shortly to comment )
What symtpoms are you having?  Do you still have hearing on your an side?

Please know we're all here to help you by giving advice ( you can take it or leave it  and listening to your concerns and sharing our experiences and sometimes providing comic relief as this is a stressful time!  Just know you are among friends even though we've never actually met face to face 

[Sue]

Hello and welcome to our club!

There are many people on here who have had radiation as their treatment of choice. I had Gamma Knife.  So far, so good, but it's only been since last April 18 when I had my treatment.  I hope you find answers to your questions here. I'm sure you will. This is a great group of people.

Sue in Vancouver, USA

[Quailruner]

Hi and welcome!
Suzanne had treatment at barrows.  I'm sure she'll be along shortly to comment )
What symtpoms are you having?  Do you still have hearing on your an side?

Please know we're all here to help you by giving advice ( you can take it or leave it  and listening to your concerns and sharing our experiences and sometimes providing comic relief as this is a stressful time!  Just know you are among friends even though we've never actually met face to face 

"What symtpoms are you having?"
I have that nice ring on my AN side, and sometimes clicking. A couple of bad Vertigo episodes this year.

"Do you still have hearing on your an side?"
Yes,   I still have hearing except high freq around 80 to 90% depending on the day. But I have lost about 15 dB Hi Freq side in the past year.
I am leaning towards the radation treatment, seeing I still have most of my hearing. But the yo yo side in me tells me to Kung Pow  that thing out of my head.

Thanks for your support.

[Patti UT]

Quailrunner,

    So sorry you have a need to be on the AN  forum, but welcome. The folks here are so helpful and compassionate. You say the AN is 1.2,  is that mm or cm. If it's mm the watch and wait seems best. But i'm guessing it is cm or you wouldn't be considering surgery. Certainly weigh out all your options. You can find great info here on all types of treatments. Do you homework. the research is a scary process, but you need to now all your options.
Good luck
Patti UT

[msuscottie]

Welcome Kenn

[richard]

Kenn

I live in Phoenix also. Ahwatukee actually.  My AN is about your size and the last Doctor I spoke with recommends translab.  My face should be fine, but as soon as I found that out I shifted all my fear and worry to my hearing.  My hearing is about the same as yours and I would love to keep at least half of it.  I hope to be going to Doctor Daspit for a second opinion.  With CIGNA nothing seems to be for sure.  Daspit works out of Barrows and seems to have a good REP.  Most of all you might want to contact LoriW because she had Dr. Syms- I'm pretty sure.  I sent her an E-mail to let her know about you. I'm having second thoughts about translab and maybe considering Retro to maybe save some hearing.  The tinnitus is awfull, and I'm such a whinner.

[Quailruner]

Richard,

Thanks for the info; I am waiting to see Dr Porter for possible surgery before the end of the year. I am not sure if Porter does the surgery or if it is another Dr at Barrows does it. Dr Syms seems to be the middle man.
I would like to see if I can get my insurance to OK the surgery over at House in LA. It sounds like they are the specialists. If the insurance will not cover me out of state, then I will have it done here in town. My insurance is through Aetna and they only have a service area of Phx and Tucson.
Sounds like your in the some position I am with AN. I would love to keep my hearing, but fact is I will probably lose it sooner or later. I try to keep my hopes up for the best decision.

I would like to hear from Lori or anyone who has had the surgery here in town; this would give me more confidence in the operation. I will let you know what Dr. Porter has to say after I meet with him in the next few weeks. Keep in touch, I will do the same.

Thanks again,

Kenn A.

[Palace]

Hi Kenn:


I hope I'm doing the right thing by going with Stanford in about four weeks.  (CK)  I don't think "House" could do more for me in LA.  My AN is 22mm and growing.  I don't think they can save my hearing on the right side.  I would like that as I have alittle left.  (not much)

I'm having migraine headaches now every morning.  Lately I'm starting my day at midnight.  I hope you are getting more sleep than most of us on this forum.

I wonder if their is a waiting time to get appointments all around or if the big cities are worse.



Take care,



Palace

[Road Trip Dale]

Welcome to the club...

I chose Translab and sacrificed my hearing for the sake of the facial nerve.  However, having said that, I had about a 40-50% loss of hearing in the AN ear anyway, and the tinnitus blocked most of the useable sound, so I have actually discovered that I hear better now with one ear (in one on one cases, restaurants and department stores are a different story) than I did with two working ears.  The translab is scary since they are drilling a hole in your head, however, my experience with was very good.  I travel full time and was afraid that I'd become house bound after surgery, but I was back on the road 6 weeks after surgery and haven't looked back.

Tough decisions, and only you will know what you are most comfortable with...I'm totally happy with my decision, but thats me.  Good luck on your decision and make sure you are totally confident in your doctor's.....ask around.  If you can get to House...thats the place!  I had mine done in Kansas City, but my doctor was trained at House.

Good Luck.

Road Trip

[richard]

Kenn

I'll talk with Lori face to face tomorrow.  She's been on back shift.  I'm pretty sure I'm looking at surgery in December.  Merry Christmass.  I have seen Dr Fucci in Gilbert.  He did a fellowship at House in L.A.  where it seems they wrote the book on AN's.  I've actually got a copy of Chapter 11- "Translabyrinthine Approach"  As authors it lists Brackmann, Hitselberger, and Fucci.  So I feel pretty good about Fucci. Check out www.azmd.gov for your Doctors.  On this site it also shows which medical plans are taken.  Dr. Fucci takes Aetna.

Richard

[kippy6]

Hi Quailruner,

I would definately opt for the House in LA. I went there all the way from Georgia. I know you said you're not sure if your insurance would cover it or not, but even still, you can send your films to get a free opinion from Dr. Brackmann there. (Or you can order a CD of your films from your MRI facility to send off if that makes you feel better). If you decide you like him, they can talk to your insurance company for you and try to work things out. I wouldn't totally rule out the House this early in the game plan. At least get a free opinion from them! Yes, they did write that chapter. I sent my films to Dr. Brackmann initially for a 2nd opinion from an expert doctor, never dreaming I'd go way out there for surgery. When Dr. Brackmann called me 2 or 3 days after receiving my films, we talked, and I asked if he had any other information I could read. He sent that chapter to me via e-mail along with some other great information. I still have it on my computer. If you get him to review your films, he'd probably send you info via e-mail if you requested it. But the more I researched the experts in the field, the more his name kept popping up, and he could answer my tough questions. Be ready for his phonecall, and have your list of questions ready in advance.

Get the most qualified doctor your insurance will allow. Through your extensive research, you will find the best doctor for you.

Also, have you contacted the Acoustic Neuroma Association (the group that sponsors this discussion forum)? Look at http://www.anausa.org/contact_us.html for more info. If you contact them, they will mail you all kinds of great literature (brochures) to read about AN! I found that information very, very helpful. They even have one booklet that talks about questions to ask your doctor... also, make sure to find out how many AN surgeries your doctor performs each year, etc..., and ask how many of those had successful outcomes. Your doctor should be able to answer these types of questions.

[Tinu]

Welcome to our little group Kenn, best of luck to you.

[Obita]

Hi Kenn and welcome:

Many, many people go back and forth between radiation and surgery.  It is what makes the diagnosis so stressful.  How many other medical conditions do you have a choice in your treatment?  Not too many.

I didn't have a choice because of the size and placement of the tumor so, surgery it was and I am just fine.

After you have seen enough doctors you will be at peace with your decision.

Best of luck to you, Kathy

[ppearl214]

Hi Kenn and welcome.

Barrows... you are in fantastic hands there, regardless if you choose micro-surgery or CK that they offer there.  I'm sure you may be a candidate for both, so I know the deciison making process is difficult.

Maybe a suggestion to help, if you ask yourself the following questions:

1.  Your lifestyle?  How will both treatments affect your lifestyle?
2.  Do you feel "get the dang thing outta my head!" or "Can I deal with it dying in my head and not cutting?"
3.  How does my health care cover both treatment options?
4.  Side affects of both options? Which are more tolerable to me?
5.  Do I want to go invasive vs. non invasive?
6.  Post treatment affects.... what are they?
7.  treatment teams and their experience in treating AN's.

Just a few questions to ask yourself as I'm sure others here can also advise of other questions... but ask yourself, you don't have to answer to us.  But know that regardless of what you decide, know that you should never question your decision and have faith in your decision... and know we are here to lend a shoulder, a watered-down drink and a bad joke if needed.

Hang in there.... we're here for ya!
Phyllis