bilateral AN

[Debbie Lynn]

Hi all,
I joined this forum about a week ago to find info for my mom. She has a second AN in her right ear that has been watched for about 8 years. She will have an MRI on Monday and will probably end up having something done. GAMMA??? CYBER?? She had her left AN removed surgically in OCT of 1994 and The Mayo Clinis in Rochester. Total left side hearing loss as the tumor was wrapped around the nerve. She likes to be in quiet places and has balance troubles, but she's my hero. It was a wonderful, horrible experience. Her care was excellent and now we face this hurdle again. I was told by my ENT to get an MRI this month due to the bilateral AN's my mom has. I guess I am wondering how many of you have had both ears involved and if your parents have also had AN's.

I think you are an awesome bunch of people and have given me so much info to share with my mom. So I thank you for that.

Please share your knowledge...
Debbie

[cookiesecond]

Hi Debbie Lynn and welcome to  our group. I think it is great that you are helping your mom. I had my AN removed surgically 8-2-05 and had good results. I still battle with dizziness and nausea at times but overall, I am doing great.There are many on here with a wealth of information to share. I have heard with bi lateral ans, it could be nf2 and that could be hereditary. I am sure someone will chime in soon and help. This is a great group for information and support.
I haven't been on here in about  2 months as my daughter had brain surgery10-17 to remove a blood clot and then several strokes. We just got home Thanksgiving!!! As always we have A LOT to be thankful for! God is good. I will keep you guys in my prayers.
Take care,
Lynn

[vjharris]

Hi Debbie,
You may want to research NF2, as I think your mom has the conditions to meet that diagnosis if she has ANs on both sides. It can be hereditary 50% of the time. Not sure how old you and your mom are, but if she didn't get her tumors until late in life, it may be a milder form of the disease.
There are others on this forum with much more knowledge about NF2 and ANs than I. It's a great group and you can find info and much support here.
My best to you and your mom.
vjh

[Jeff]

Hi Debbie,

I have bilateral  acoustic tumors and thus NF2. My brother and I inherited this from my father who had bilateral tumors as well. I think that your doctor is on track suggesting that you have an MRI. When I was diagnosed (nobody every told my father about NF2 and the fact that his children had a 50/50 chance for inheriting it), my doctors suggested that all of my siblings have MRI scans as well. Here are the diagnostic criteria for NF2:


Also, for those interested in reading about NF2, here is a great overview. It was written by Dr. Slattery at House Ear Clinic for a text called Neurotolgy, by Dr. Jackler and Dr. Brackmann: http://www.advocurenf2.org/01_understandingnf2.html

Best wishes to you as you grapple with this.

Jeff

[Dealy]

I am an Nf2. This is my 2nd time around after having my first surgically removed 17 years ago. Now I have another one only on the right ear. My first was on the left ear-surgery left me deaf. I opted for FSR from Johns Hopkins in Baltimore Maryland this summer. A protocol from Germany was utilized using radiotherapy over 25 sessions to perserve hearing and the acoustic nerve. I am 5 months out and I believe I have swelling going on. My hearing is definitely not as good as it was this summer-it was 96%. Will have 6 month MRI coming up in end of December. I do know that GK is too intrusive on the hearing nerve and an NF2 that I read in Seattle tried CK with diasterous results. Their are non-evasive procedures but not w/o risks. After an extensive search-I still will stick with my choice of Fractionated Radiation . I had to go 25 sessions because my tumor was 2.7CM. Need more info-feel free to contact me. These are not easy to deal with or make choices-but their are options that I did not have 17 years ago. Good Luck