newly diagnosed

[nanramone]

Hi everyone,

I was just diagnosed with an acoustic neuroma. It's 1.9x1.3x1.3. I'm 55 years old and in good health. I live in Indiana, and wonder if anyone has experience with good doctors either in Chicago or Indianapolis? I have moderate hearing loss and tinnitus, and occasional dizziness and transient headaches. I've been reading about this condition, and am concerned about all the difference in opinion about how to treat this. I feel afraid of radiation, though maybe that's the best thing.

Thanks for advice about qualified Drs. in my area.

Nan

[leapyrtwins]

Hi, Nan and welcome to the Forum 

I was diagnosed with my AN at the age of 45 1/2 in 2007 and had surgery to remove it.  I had a very good outcome.

I live in Niles, IL and have an incredible doctor who does both surgery and radation.  I'll send you a PM with more details.

In the meantime, you should contact the ANA for their informational literature - it's very helpful.  They'll also send you a WTT (willing to talk) list that's also very helpful.

Best,

Jan

[sues1953]

Hi Nan and welcome

I am sorry to hear of your newly diagnosed AN but you will gain much information here.  We have all been where you are now.

I was diagnosed this past Dec. with a 3.2 cm AN at the age of 56.  I believe after extensive research, much through this forum, I am ready to make a decision.  I believe there are very good Dr.'s in your area and the people that live close will let you know who they are.  Get as many opinions as you can.  One great resource you will find on the internet is House Ear Clinic in LA California.  They have a website with the information on where to send your films to get a free opinion.  I can't tell you how valuable they have been to me, even knowing that my insurance co is not going to pay for me to go there for my surgery. 

My thoughts and prayers go with you.

Sue in Michigan

[Jim Scott]

Hi, Nan ~

I don't live in your state and so, I can't recommend any 'local' doctors - but I did want to welcome you to the ANA discussion forums.  We have many members in your area  (Indiana) and I know they'll be eager to supply you with doctor information as well as treatment advice, based on their experience.   

Jim

[sgerrard]

I feel afraid of radiation, though maybe that's the best thing.

Although I had radiation, and I don't think there is anything to fear, I would still say that for as long as you feel afraid of it, it is not the best thing for you. Don't be afraid to pick surgery if that is what you like better.

I can't imagine going through radiation treatment and the first year of waiting if I had been afraid of the outcome - it would have driven me crazy. If you are not comfortable with it, then don't do it. I guess if you are not comfortable with surgery either, and you have to do one of them, then you close your eyes and flip a coin. But if at all possible, you should feel confident in your treatment before you go in.

Besides Chicago, there are also well know AN doctors in Cincinnati Ohio, which I  think is nearby to you. Welcome to the forum, Nan!

Steve

[nanramone]

Thanks for advice folks. I'll be calling Chicago area doctors tomorrow to make an appointment. I'm afraid of the unknown, that's all. Aren't we all? Surgery also seems very frightening. I guess this is just hard for anyone to deal with at first. I'm glad I found this forum and will be back, I'm sure.

Nan

[leapyrtwins]

Nan -

although I'm partial to my "Chicago" doctor, whom I highly recommend, Steve is absolutely right.  There are some great doctors in Ohio - Drs. Tew, Pensak, and Theodosopoulos all come to mind. 

It's perfectly normal to be scared of the unknown, but we've all been there and lived to tell the tale    You'll get through this - and chances are you'll find that you are stronger than you think.  That was definitely my experience - after the initial freaking out, that is 

Don't hesitate to lean on us; it's what we're here for.

Best,

Jan

[Barb909]

Hi Nan,

I am very new at this also, and although I live in the Seattle area, I am thinking of going to Cincinnati for surgery as I have family there who would help with postop, and there are supposed to be very good doctors at the Mayfield Clinic. It is so hard to know what to do!

If you haven't already, spend lots of time reading here, and elsewhere on the web. Although it is exhausting, you will feel not so alone and you will know that there are options. Initially, reading the publications from ANA (again and again) also were very helpful to me.

Good luck with all of this. I'll watch for more from you!

Barbara

[nanramone]

I'm noticing that people often mention the House Clinic in LA. The ENT who ordered the MRI that discovered this AN referred me to a doctor in Indianapolis, whose name is Jerry House. I have an appointment to see him on 4-1. I just looked at his bio, and he has a fellowship from House Clinic in LA, and one of his primary interests is treatment of acoustic neuroma - now I'm wondering if he is not also related to whoever started that clinic. My ENT told me that Dr. Jerry House is very good. I'm going to keep this appointment, and will most likely also make an appointment with the doctors at the Chicago Ear Clinic. I'm happy that I can take my time - and yes - this initial period is probably going to be the worst of it.

Has anyone got any knowledge of possible endoscopic surgical treatment of ANs?

[GRACE1]

You say that you feel afraid of radiation, though maybe that's the best thing.  We fear what we don't know, so perhaps as you find out more about radiation, you might become comfortable with it.  Just research, research, research.  You have to take the route that you feel the best about.

Good luck!
Grace

[JerseyGirl2]

I'm noticing that people often mention the House Clinic in LA. The ENT who ordered the MRI that discovered this AN referred me to a doctor in Indianapolis, whose name is Jerry House. I have an appointment to see him on 4-1. I just looked at his bio, and he has a fellowship from House Clinic in LA, and one of his primary interests is treatment of acoustic neuroma - now I'm wondering if he is not also related to whoever started that clinic. My ENT told me that Dr. Jerry House is very good. 

Hi,

I noticed in the bio that Dr. Jerry House is 59 -- that means he's way too old to be a son of the mid-60s Dr. John House (the son of Dr. Howard House, founder of HEI), who is the current "Dr. House" at HEI, nor is he a sibling, to the best of my knowledge. Could he be a nephew of Dr. Howard House? Maybe ... but even if he is, I'm not so sure that a "genetic link" to HEI should be a particularly strong factor in your decision-making (and I'm not suggesting that you're even thinking along those lines). As you'll notice from many posts on this forum you'll just know in your gut when you've found the right doctor for you.

Catherine (JerseyGirl 2)

[leapyrtwins]

Nan -

currently there is only place in the US that does endoscopic removal of ANs and that's SBI (Skull-Based Institute) and Dr. Shananian.  I think SBI is in California, but I may be incorrect.

Endoscopic seems to be more of the wave of the future, than the norm for AN surgery; however, those who have been treated by Dr. Shananian have been very happy with their results.

There are various posts on the Forum about SBI and Dr. Shananian - just search.

Jan