ANA Discussion Forum
General Category => Inquiries => Topic started by: MeganA on June 29, 2010, 08:54:47 am
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Hello,
My name is Megan and I have Bilateral Acoustic Neuroma.They are still small (Right 1.5cm x .9 x .6 Left .5 x .3 x .3) I also have a few neurofibromas on my spine. My Brother and My father also both have bilateral acoustic neuroma. I was just wondering if there was any people that had siblings or parents or both that have AN. I know that it is both rare and hereditary, I was just curious if there are any other families out there like this.
Thank you,
Megan
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Megan .....
I am not NF2, but I wanted to welcome you to this forum of caring, supportive friends. There are several current posters who are NF2 and hopefully will respond to your question soon.
All I can say is that giant strides are being made in the treatment of acoustic neuromas so your treatment options may be quite different from your brother or father's.
Best thoughts and tell us a little bit more about when you knew this, your situation, etc.
Clarice
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Hi, Megan,
Welcome to the group! It is great to have you here. There is another website and support group NF2CREW just for people with bilateral acoustic neurofibromatosis. We have a section NF2 on the board but not a lot of members. Most people who post there developed a second AN years after the first one and rarely simultaneously. You might want to check out NF2CREW as a potential source of information. Hope you post more and tell us about your situation.
Eve
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Hi and welcome, Megan ~
I'm sorry to learn of your bi-lateral AN diagnosis but I'm glad you found the ANA website and have chosen to post your question. I expect that you'll receive some replies to your query because we do have members who suffer with NF-2 (Neurofibromatosis Type II) and the condition is, as you noted, relatively rare and usually (but not always) hereditary. I believe the hereditary transfer of the gene involved is usually about 50% of patients diagnosed with NF-2. I trust whatever information you can learn regarding the prevalence of NF-2 patients who have the condition in their family line will be of some use to you and I hope that your ANs can be be treated effectively. Feel free to ask any question, here.
Jim
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Jeff on the forum has family with NF2. I am guessing mine is the genetic mutation and also as no sign of it on both sides till I was 51. He keeps up on here so hopefully will see or you can send him the PM. Personal message just to him. Not fun to have and have to make sure and have a dr that really knows them! Good to you and your family!
Cheryl R