Author Topic: New to the club ...  (Read 1891 times)

Sheba

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New to the club ...
« on: April 17, 2016, 03:20:24 pm »
Hi.  Diagnosed last week, 1.4 x .7 x .9  (age 54)

Very much appreciating the awesome content and intelligent people frequenting this board !!!   Sent packets to Chang@Stanford, and Schwartz@House already.  Also exploring local option in Dallas at UT Southwestern, but doubt that they have the same level of expertise as some of the other centers/docs referenced a lot here.  Will probably send to Lunsford for GK opinion and maybe UCLA or Keck as well. 

Saw a very encouraging Youtube video by Mark Ruffalo - recommended viewing!:
https://www.youtube.com/watch?v=gxmHPXcp2b4

interesting that Mark R found Acupuncture as possibly very helpful for him in recovering facial movement post-op.  I'm more of a mainstream than alternative medicine person, but for AN, I think we want to incorporate anything that may help with the healing !!

Questions -

Is anyone out there familiar w/ the AN team in Dallas at Univ Texas Southwestern?  (Kutz, Isaacson, Barnett) ??   interested in first hand experience if anyone has.   seems like they are not as "focused" on AN as House, Keck, UCLA etc.

Do most people get an overall physical ASAP to detect if any other issues may be going on / might impact surgery?  I'm planning to do that ASAP.

Am somewhat concerned about traveling for surgery and "what if" we have infection or CSF leak or something after coming home - how has that worked out for people who traveled?

THANK YOU
Sheba




Diagnosed 4/2016 1.4cm AN.  Mild hearing loss and tinnitus.
Removed 7/2016 at Keck, Drs. Freidman and Giannotta, Retrosig approach.  Lost hearing in AN ear, but no other negative outcomes.  Will investigate bone anchored hearing devices.

researcher

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Re: New to the club ...
« Reply #1 on: April 17, 2016, 05:29:34 pm »
Hi Sheba,

I traveled for surgery and was concerned about csf leaks and other potential complications. Ask the doctors what should happen if you have a leak. I was told to find someone local to fix it if I had a leak. Thankfully I did not have one.

Ask the team of doctors all of your questions. Write down their answers. It's amazing how much info you will be processing in the next month or so. If you do not remember their answers just ask again! This is quite a process to go through. The only good thing about an AN is you have some time to decide what to do.

I do not have any experience with the Dallas team you asked about.

Adding... I had a physical so my PCP would clear me for surgery. Also I got a flu shot. Good luck to you.

Take care.
« Last Edit: April 17, 2016, 05:31:35 pm by researcher »