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[Sorrell]

Greetings all:

First time posting......51 y/o active male Birmingham AL , AN diagnosed 12/8/16 initially estimated by ENT surgeon at 12 x 8 mm. Not touching brain stem.   MRI report: " intracanlicular enhancing tumor, which is just protruding into the cerebellopontine angles cistern.....do not see extension into the cochlear aperture or into the vestibule " 

Waiting for appointment for local consult.  Progressive hearing loss over past 3.5 weeks with a few fluttering issues ( think it was diagnosed as stapedial spasms) over past 3 years.... Right Ear. Hearing loss: Pure-tone average -62, Speech "Discrimination - 52%. Not sure on how to address (or not) preserving existing hearing. No facial nerve/headache issues right now. Some "tracking" "fuzziness" while mountain biking.

Going through all of the info and trying to process.

This forum is awesome.

All suggestions, prayers welcome... Thank you!

[mac84]

Sorrell,

Welcome from a fellow Alabamian. I'm in Prattville but see Dr. Rivas at Vanderbilt.....you should consider that facility as well as they do see many AN patients and the care I've rec'd since 2014 has been excellent. You can see my stats below but I'm on the watch and wait. I am a runner so I think those of us who are active biking or running probably do get an advantage on the balance thing.....it's got to help I'm sure.

Hang in there....looks like you're in for a watch/wait as you seem to have time to watch it a while.

Cary

[Sorrell]

Cary,

Thanks for the reply and comments. We are curious as to what led you to Vanderbilt and your doctors there ? I'm liking the Wait/Watch route more and more being only 3 days into this journey.
Want to talk to some doctors to hear what they say about my circumstances and to ultimately pick with whom to consult.

thanks again,

Sorrell 

[mac84]

My ENT in Montgomery referred me to a Dr. Grayson (If I remember correctly) at UAB but in thinking about it initially, I just wanted to go somewhere reasonably close but that still had a reputation for treating a larger number of patients. I thought of Emory in Atlanta but wasn't sure if they did many...then thought about Vandy and I googled them. Turns out that up came the "Skull Base Center" and I went there and did the research. I also saw that some on this forum had gone there so checked with them.

They have a patient coordinator who is very good and while I can't recall the exact # that Dr. Rivas at Vanderbilt said they treated, the # 300 yearly seems right. What I did was make the appointment with them pretty quickly, had another MRI there at Vanderbilt and then met with them right after the MRI. They were able to pull it up and then answered all of the questions I had at the time...making a plan to monitor this. My next MRI was 6 months later, then went to once per year. It's an easy drive up there....MRI at 1PM, then enjoy a nice dinner and check into the Airbnb. I meet the next morning with Rivas right after my hearing test. What I like is that he pulls up every MRI I've had and looks at each one side-by-side as we talk about any changes.

[alabamajane]

Hi Sorrell and welcome to the forum from another Alabamian,, only  coastal South Alabama,,,

I traveled in 2010 to UAB and Kirklin Center. Not sure who you are waiting consult with but there are very competent doctors there also. My surgery was there in 2011. I have personally spoken to three  others who have gone there. I say this just in case you are interested in staying close to home.

Vanderbilt is a very good alternative as are several other places you can read about on here if you want to travel.
You do seem to have time to research and get consults. There are several Drs who will give you free phone consults after you send them a copy of your latest MRI. This can be very helpful to you to get consensus on treatment options or watch and wait.

Good luck to you,, ask questions and gather info from us. We aren't medical opinions but we "have been there".

Peace and prayers for you on your AN journey,,
Jane

[Sorrell]

Cary and  Jane,
thank you for the information.

Cary,
Has you hearing continued to diminish ?

Anyone know any reports on CyberKnife procedures ? This came up today.... Neurosurgeon doctor friend of an anesthesiologist doctor friend said to do Cyber Knife if less than 3cm.

Thanks.

[mac84]

Sorrell, yes...hearing has diminished but I haven't kept up w/ the stats as well as I should. The higher frequency is down around 50%....It really doesn't bother me much. It's the tinnitus that gets me as a result of that.

[Sorrell]

Update:

I have had a phone consult with both House and Keck, and a neurosurgeon friend in Seattle, and am now comfortable to declare being on Watch and Wait.

Keck said my hearing loss is on the fence of being to far gone to take action to preserve, but that also means on the fence of being NOT to far gone to preserve. House interpreted my hearing loss as more substantial and salvaging not as likely or reasonable to try. Both say I'm a candidate for middle fossa. House was very assertive on waiting, which suits me. Keck hinted that way and said they agreed when I said I was planning to wait.

House said the size is more 8mm long. So its smaller than first estimated.  I have some dizziness sporadically but its not all that bad and House suggested my brain may have adapted to the change and I hopefully won't have a problems there.
I'll post along the way and look forward to hearing others stories and offering  encouragement.

Merry Christmas and Happy New Year !

Sorrell

[mac84]

Glad you're feeling better about things.....good luck! 

Cary

[keithmac]

Update:

I have had a phone consult with both House and Keck, and a neurosurgeon friend in Seattle, and am now comfortable to declare being on Watch and Wait.

Keck said my hearing loss is on the fence of being to far gone to take action to preserve, but that also means on the fence of being NOT to far gone to preserve. House interpreted my hearing loss as more substantial and salvaging not as likely or reasonable to try. Both say I'm a candidate for middle fossa. House was very assertive on waiting, which suits me. Keck hinted that way and said they agreed when I said I was planning to wait.

House said the size is more 8mm long. So its smaller than first estimated.  I have some dizziness sporadically but its not all that bad and House suggested my brain may have adapted to the change and I hopefully won't have a problems there.
I'll post along the way and look forward to hearing others stories and offering  encouragement.

Merry Christmas and Happy New Year !

Sorrell

good news indeed - have a happy Christmas and a great new year!