NeuroTalk Support Groups - Acoustic Neuroma

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- General Health Conditions & Rare Disorders (https://www.neurotalk.org/general-health-conditions-and-rare-disorders/)

- - Acoustic Neuroma (https://www.neurotalk.org/general-health-conditions-and-rare-disorders/18973-acoustic-neuroma.html)

Acoustic Neuroma

I hope that someone can give me some info on what to expect. I was just dx'd with an Acoustic Neuroma. After reading about it on the internet, I can see that many of the symptoms listed are things that I've complained about to my Dr's for numerous years (hearing loss, ringing in my ears, facial numbness, headaches, and such). My ENT is scheduling an Lumbar Puncture with air, followed up with a CT scan, to see just what is all involved with the Acoustic Neuroma. I can't have an MRI because I have electrodes and some of the leads from the SCS that they removed in 2000 and 2001. If anyone here can give me any input on this I would greatly apppreciate it. I'm scared to death of having the Lumbar Puncture done and just what they may find. :confused: :( Thanks in advance for any info and info you can give.

Cjay:Thanx:

Hi Cjay,

I'm afraid I can't help much, but I wanted to direct you to a site where you might find some information. Acoustic neuromas occur frequently in neurofibromatosis type 2. If you go to the Children's Tumor Foundation board (formerly the National Neurofibromatosis Foundation) and find the info for NF2, you might find some interesting information.

Good luck with it all.

Quote:

Originally Posted by cjay (Post 95179)

Hi Cjay

Would love to know how you went on. I've just been diagnosed with acoustic neuroma. The more I read about the possible after-effects of surgery for the removal of the acoustic neuroma, the more scared I get. I am wondering how much could be achieved using the Gamma Knife rather than traditional surgery.
stewart-tn:confused:

I had a friend who had three of these. One on each side and a recurrance on one side. I suggest you find a place that specializes in acoustic neuromas - such as the House Ear Clinic in Los Angeles as that will give you the highest comfort in the best outcome.
http://www.houseearclinic.com/acousticneuroma.htm
He had his done in NY, by a wonderful doctor, but I think he is only doing pediatric now. You may have to travel (I live in NJ and went to LA for my pituitary surgery) but in the end, it is really worth it to get a specialist.