Author Topic: This sucks - but I'm glad I found this forum  (Read 3214 times)

tlastrange

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This sucks - but I'm glad I found this forum
« on: February 23, 2016, 07:14:10 am »
January 2015

My wife is tired of telling me to turn the TV down so she insists I get a hearing test. It reveals asymmetric hearing loss and tinnitus in my left ear. The Audiologist recommends I see an ENT. I think my hearing is bad because I listened to too much loud music in my youth and I drag my feet setting up the ENT appointment.

April 2015

I see Dr. Ed Dodson at The Ohio State University. He recommends an MRI "to rule out a rare condition." It turns out I have an AN (11mm x 9mm) on my left side. Given the relatively small size he recommends another MRI in December to monitor growth.

December 2015

Second MRI shows the AN has grown to 14mm x 11mm (yikes). I was good April to December because I wasn't going to worry about anything until I got the second MRI. Now it's getting serious.  :-\ Dr. Dodson doesn't recommend gamma knife because of my age (a young 56). We didn't really discuss different surgical options because frankly I wasn't prepared to even know what the different surgical options were.

February 17, 2016

Drove up to the Cleveland Clinic for a 2nd opinion. Dr. Erika Woodson discussed a couple different surgical options (Translab and Middle Fossa) and gamma knife. She ultimately recommended gamma knife which wasn't totally surprising given that's one of her specialties. I'm not keen on the gamma knife option at the moment.

February 23, 2016 (today!)

Going back to see Dr. Dodson at OSU to discuss surgical options with the intent on getting something scheduled. I still have 70% hearing in my left ear and would love to try to hang on to that but reducing the risk of facial paralysis is at the top of my list right now.

I'm used to reading technology forums, gadget forums, audio-visual forums... I never thought I'd be researching on a medical forum but I'm so glad I found this place.

Thank you to all who have posted your experiences. It's truly comforting to know that this little "club" exists.

--
Tom L.

CHD63

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Re: This sucks - but I'm glad I found this forum
« Reply #1 on: February 23, 2016, 08:28:02 am »
Hi Tom and welcome to this rather exclusive "club" .....

It goes without saying that none of us wished to become members of this club.  However, you will find much support here and been-there-done-that new friends.

If you have not already done so, please send for the free ANA informational materials.  They contain a wealth of accurate and up-to-date information.  See:  https://www.anausa.org/component/rsform/form/20-ana-contact-us-copy

You also should know that because ANs are relatively rare, you need to seek out medical care from physicians/surgeons who have vast experience treating specifically ANs, not just any brain tumor.  Many of us traveled great distances to receive top medical care.

Best wishes on your journey.  Ask any specific questions you may have and let us know how you are doing.

Just a gentle reminder ..... there are many AN patients out there who have been treated successfully and gone on with their lives.  So, do not be frightened by some of the scare stories you may read on here or elsewhere.

Thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

rupert

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Re: This sucks - but I'm glad I found this forum
« Reply #2 on: February 23, 2016, 07:21:56 pm »
If your doc is telling you that you're too young for GK at 56 well,   ???   he's against it totally.  I know you have sought at least one other opinion but,  with the size of your AN I think all treatment options should be available to you.  I would recommend seeking out several other opinions.  As Clarice stated, those docs with  experience, experience, experience with AN's bodes well for better outcomes.  Good luck to you.

Michelle H

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Re: This sucks - but I'm glad I found this forum
« Reply #3 on: February 24, 2016, 07:09:30 pm »
Hi I had my AN removed on June 30. My brother is a neurosurgeon who actually performs this surgery. I was very fortunate to have his expertise! He did not operate on me for obvious reasons nor did I go to the hospital he is at. He is the only surgeon there that does this.

Based on the places you have gone I believe we are geographically close. I had mine out by Dr. Chen at Pittsburgh Alleghany with the assistance of Dr Aziz. I also had good heating still in my right ear but was most concerned about the facial nerve. I am completely deaf now in my right ear and trying to find a non surgical solution but my face has NO deficit! The facial nerve was not damaged at all!

We chose Chen because he trained at House in California and has done more acoustic neuroma removals than anyone else in the area. We chose Alleghany hospital over UPMC because of the resident factor. I did not allow any residents to even observe. I was told by my brother and his many colleagues that took time to speak to me not to allow any residents. You want expertise and experience. Yes everyone needs to learn but not on me. I see that you are going to Columbus we have very strong ties to OSU and did Not go because you can not keep the residents from operating at a teaching institution.

Hope this is helpful and good luck!