Author Topic: My AN Story  (Read 5607 times)

Pembo

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My AN Story
« on: February 22, 2005, 05:21:52 pm »
I was diagnosed with a 4 cm AN on May 10, 2004. I had retrosigmoid surgery on June 3, 2004. My surgery was 16 hours and all was removed. My facial nerve was intact and stimulated on contact at the end of surgery.

Currently, 8 months later, I am still recovering from facial paraylsis and trigeminal nerve trauma. I also lost my hearing on the AN side as a result of surgery.
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

jcc

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Re: My AN Story
« Reply #1 on: February 23, 2005, 02:46:50 pm »
Wow, sorry to hear that. I think they should have use the translab approach. It would have been less risky.

Best wishes.

Raydean

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Re: My AN Story
« Reply #2 on: February 24, 2005, 03:42:42 pm »
Dear Pembo

I'm sorry that you're dealing with so many issues.  As you know the bigger tumors outcomes can be the most difficult.   You might want to ask your treating doctor about having a EMG done.  This test will show how much or how little nerve response and where.  We found it very useful during our decision making to have hard numbers to consider.  There is also facial retraining that might be helpful.  Again, your doctor can direct you in the right direction.  it's also important to stay on top of eye issues due to the facial paralysis.  Please consider being seen by your eye doctor.

What kinds of problems are you having with the 5th nerve?  We found we had to be extra careful with dental issues due to the numbness, dry mouth.  Your dentist can provide you with dental aids that will help reduce the chance of dental issues.

There has been some excellent advances made in the area of hearing aids, the BAHA hearing system being one of them.  This is another area to bring up to your doctor so you can bounce around ideas.  Sometimes the doctors assume we know what's out there, or what's available. when in reality we're so busy dealing with the issues at hand that's it's hard to find a direction.

Please consider contacting the National ANA Office in Cummings, Georgia for the contact person for the support group nearest you.  We found our group to be a very valuable source of information and a wonderful source of emotional support.

The ANA info should be on the home page of this site.  Please feel free to contact me anytime.  my husband has/is dealing with some of the same issues as you.

Thinking of you
Raydean
Do not go where the path may lead, go instead where there is no path and leave a trail.

bonehead

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Re: My AN Story
« Reply #3 on: February 24, 2005, 06:03:00 pm »
I'm curious JCC - where is your medical degree from?

Thanks
2.0 cm removed via retrosigmoid 4/7/2004
Dr. Sisti and Dr. Wazen
Columbia Presbyterian, NYC

Pembo

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Re: My AN Story
« Reply #4 on: February 25, 2005, 02:27:32 pm »
jcc-the retrosigmoid approach was the best for the size and location of my tumor. I really had no choice. My tumor was pressing on 5/6 cranial nerves, very atypical.
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

 


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