Author Topic: just diagnosed  (Read 6669 times)

Lesliegc

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Re: just diagnosed
« Reply #15 on: July 14, 2011, 01:53:51 pm »
Hi Henry; It seems like I was just where you are not that long ago....
I met a woman who lives here near me who went through this a couple of years back, and when she went to the ENT surgeon at Dartmouth, her husband asked him where they'd go if it was his wife, and the surgeon didn't hesitate when he said HEI in LA. I talked to Dartmouth, and then Dr Friedman in LA, and after my conversation with Friedman, canceled my appt at Mass General with some other doctor. The process was going to be really drawn out elsewhere, Dartmouth didn't inspire my confidence, and my understanding (and feeling after talking to him ) is that House Ear is simply the best. I am dreading the long haul out there, but my peace of mind made it worth it, for me. Plus we used to live in San Diego so will go down there between pre-op day and surgery. To be honest, I only considered the gamma knife thing for about 2 minutes. It just wasn't the right choice for me, but if I had decided to talk to docs who favor that treatment over surgery, I might have felt different.  Some of the info about gamma knife is I'm sure he said/she said, but for me, I'm relatively young, I want this thing OUT of my head, and radiation gives me the wilies. I live in northern VT; you? I will let you know how it went after surgery; I'll either post here or on a carging bridge site (if I get my act together). Best of luck to you; I will say that though it was an agonizing decision to grapple with, I got great feedback at this forum and connected with some really helpful people, and I have felt a lot of peace since the decision. I think it's better going into the surgery or whatever, feeling peace around your decision. Thanks for thinking of me on Jul 25  :). Leslie (also feel free to PM me--happy to help in any way)
4mmx9mm  right side
diagnosed 6/11/11
middle fossa  7/25/11 at HEI
developed chronic headaches at 5 months post op

henry

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Re: just diagnosed
« Reply #16 on: July 15, 2011, 06:58:09 am »
Leslie
Thanks for responding back so quickly and being so open about your decision process.  I live in Connecticut and love Vermont, especially Killington and long Trail Brewery.  I totally understand the "I want this thing out" you feel.  The first Neurosurgeon i saw told me i would loose my hearing if i took that approach and seemed sooooo bored that i only had an AN.  Hopefully i will get some more info this weekend when i attend the AN support group meeting at NYU.  Next Friday i go to another Dr. in Hartford and hope to get another hearing test done.  After that i think i will take the advise i received from this wonderful forum and the thoughtful people on it to send my MRI and Hearing test off to HEI for an evaluation. Yesterday I started having issues with liquids tasting bitter, it just keeps getting more interesting!  Keep us all posted on how you are doing and how you make out.  HEI is sounding more and more like an option, if i can just get past the whole "having my brain opened up" thing.
Thanks again.
Henry
Newly Diagnosed, Left side, 7.5mm AP diameter, 8.8mm transverse diameter, 5.9mm craniocaudally diameter.
Misdiagnosed for 2 years.

henry

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Re: just diagnosed
« Reply #17 on: July 25, 2011, 08:36:30 am »
Leslie
My thoughts and prayers are with you today.  Good luck and god bless.
Keep us posted.
Henry
Newly Diagnosed, Left side, 7.5mm AP diameter, 8.8mm transverse diameter, 5.9mm craniocaudally diameter.
Misdiagnosed for 2 years.