New patient with 4.0 cm AN, seeking folks w same, also experiences with Dr. Tamargo

[enidm]

Hello, I've just joined your group and this is my first post. I would love to talk with anyone who has had Dr. Rafael Tamargo at Johns Hopkins as their surgeon, or who has had a  very large acoustic neuroma.

I have a 4.0x4.1 cm AN, so the surgery must be retrosigmoid. I researched/spoke with various surgeons at Duke, Hopkins, Mayo, Northwestern and Beth Israel. I decided I liked Dr. Tamargo and his team the best. I would be very interested to hear about:

-- experiences with Dr. Tamargo
-- experiences with recovery from retrosigmoid surgery for a very large schwannoma

Thank you so much and I wish all of you the best.

[Nia]

Hi there,

Dr. Tamargo did my surgery in 2012. My tumor was small but doubled in size in just a couple of months. Before surgery, I had a really hard time just having regular conversation. My hearing was completely distorted. Loss all hearing on the affected side from the surgery but I can hear better now. When is your surgery?

[Tod]

Hi, my tumor was a bit larger and I had my surgery down here in Richmond at VCU. I am five years post-surgery, 3 years post-radiation, and doing pretty darned well. A few deficits because of nerve damage and the difficulty of my particular surgery. The tumor is on an artery, well-fed, and very sticky, plus deep in the CPA and difficult to access.

After what turned out to be a 32-hour surgery, recovery was somewhat difficult, but I was back to work on a slightly reduced schedule in three months.

-Tod

[staypoz]

enidm :  Dr. Tamargo removed my very small AN 11 years ago, so my situation was a little different from yours.  You will be in good hands at Hopkins.  I can't speak too highly of the nurses there.  They are the ones who will care for you after the surgeon has done his work and will help you heal.  Who from the otolaryngology side have you talked to?  Dr. Francis was my other surgeon; he is one of the most compassionate and caring docs I have ever encountered.     

Good luck to you!!

staypoz