Author Topic: Help from those of you from California  (Read 2137 times)

kraynok2

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Help from those of you from California
« on: March 25, 2011, 02:38:42 pm »
Dear Friends,
    I posted a few weeks ago that my AN MRI was good with no residual tumor--all clear! :D   However, a mass showed up in my throat that could be a cyst or a vascular malformation.  I went to a recommended doctor in Pittsburgh and he was unsure but thought it was a cyst.  The problem is the location--deep in the throat, with lots of facial nerves in the way and close to the carotid artery.  He sent my MRI to a neurologist for another opinion.  That was nearly 2 weeks ago.  I keep calling.  The first time I found out that the neurologist had been gone a week and would be back this past Wednesday.  They keep telling me to call, but everytime I call, still nothing.  I called again today, and there was still no information available.  I am very frustrated, as I do not know for sure what I have.  :'( When I research on the Internet, I can't tell much because this could be about 50 or more things.  I called my AN surgeon's office today (Dr. Chen) and asked if he could recommend someone else.  He will be in Monday.  To make the long story short, in my research I did read about the Osborne Head and Neck Institute in California.  Are any of you familiar with it or know of someone who has been there?   There are 2 doctors mentioned:  Ryan Osborne the throat specialist and Jason Hamilton the plastic surgeon who works with the patient at the time of the main surgery.  The website looks impressive.  Of course, my husband will want me to find someone closer to West Virginia. I do want to have more than 1 opinion.  Can anyone help me with information?  Thanks ahead of time.
Sandy

kraynok2

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Re: Help from those of you from California
« Reply #1 on: March 25, 2011, 03:37:20 pm »
Thanks Donnalynn.  I was thinking of contacting House for suggestions.  I will e-mail Dr. Friedman and keep you posted.  Thanks for the prayers--I still need them.  Sandy

CHD63

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Re: Help from those of you from California
« Reply #2 on: March 25, 2011, 04:44:22 pm »
Ditto to Donnalynn's suggestion!  So sorry you are getting the run around on this!  Call me!

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

Keri

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Re: Help from those of you from California
« Reply #3 on: March 28, 2011, 12:49:26 pm »
Sandy,

I hope you can find out some info soon! I'm so sorry that you have to wait and don't even have anything to even research. My thoughts and prayers are with you as you wait. Hope you don't have to wait too much longer.
Keep us posted,
Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!