Author Topic: Newly diagnosed here!  (Read 3035 times)

Skyblue

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Newly diagnosed here!
« on: March 26, 2015, 06:18:38 pm »
It's been a mere few hours since my MRI results came in and I am so thankful to have found this support group. I am an otherwise healthy 31 year old female and I've had tinnitus for about a year and finally decided to get it checked out. Sure enough a small (don't even know the size) growth was discovered. Ironically, it's not even in the tinnitus ear. I will be speaking with a neurosurgeon in the upcoming days and I look forward to learning more from this wonderful support group. Thank you all in advance!

Echo

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Re: Newly diagnosed here!
« Reply #1 on: March 26, 2015, 07:35:53 pm »
Welcome Skyblue!

You will find a tremendous amount of help and support here.  Lots of people with experience both pre and post treatment and we all like to share our opinions!   :)

Let us know how you make out with the neurosurgeon.  One thing I would suggest is taking the time to get a few consults and make sure you have a surgeon who has extensive experience with AN's.  The more experience the better!

Best of luck.
Cathie.
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

michellef08

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Re: Newly diagnosed here!
« Reply #2 on: April 07, 2015, 10:49:47 am »
Hi Skyblue,
I was 27 when I was diagnosed with my tumor, and had it removed! I am now (almost exactly) 2 years post-op.

My advice is see as many specialists as you can, and do as much research as you can until you come to a decision that feels right for you. The good thing about this tumor is that is grows slowly, so you have time to research your options. Because of my young age, every specialist I saw recommended surgery, but then it's a matter of which approach you are comfortable with, and what doctors have the most experience.

I would recommend sending your MRI (once you get the actual results) to House Ear Clinic in LA. They do free phone consultations, https://www.houseclinic.com/consultation/acousticneuroma
It is where I had my tumor removed with Dr. Schwartz and Dr. Friedman (who has since moved to USC). They were beyond amazing! They removed my entire tumor (small in size - 1 cm), saved my hearing, and I had no facial or balance issues whatsoever!

 Let me know if you have other questions, I am happy to share my story!

~Michelle
Diagnosed Dec 2012: AN 1.4 cm with mild hearing loss and tinnitus. Surgery: Middle Fossa at House with Schwartz/Friedman on April 10, 2013. Entire tumor removed, no facial issues, no balance issues, and they preserved my hearing!! Co-leader of the Washington, DC ANA support group since 2016.

jaylogs

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Re: Newly diagnosed here!
« Reply #3 on: April 08, 2015, 11:29:00 am »
Hi Sky Blue!! I'm sorry  you had to join our little club here, but as have been mentioned here already, there's a lot of people willing to help by answering questions and what-not.  Everyone's experience with these things are unique so keep that in mind as you see how other people have faired during their pre and post op procedures.  Let us know if you have any questions and keep us updated!  Good luck and welcome!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston