ANA Discussion Forum
General Category => Inquiries => Topic started by: Charles R on September 20, 2016, 11:16:06 am
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Relieved to come across this forum after 3 weeks of emotions, tears, and not knowing the specifics of my condition. I'm a 43 yr old male with a 2MM (size of nickel) cystic acoustic neuroma that contains blood/fluid. My wife and I met a neurosurgeon yesterday who has performed over 400 surgeries with 20 cystic acoustic neuromas including 2 others with blood in the cyst. I always knew I was kind of special but not to this degree. We were very impressed with our consultation of a neurosurgeon thus far, however, I would welcome any recommendations of top surgeons in the Atlanta area. Are current recommendation is the "Wait & See approach" getting another MRI in 3-6 months. Regards, Charles
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I have not had surgery yet but have met with Dr. Olson at Emory and was impressed with him. If I elect surgery, I will have him do it.
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You mean 2 cm right? that's about a nickel diameter
You may want to go to the discussion home page and then do searches to find stories about the Atlanta / Georgia doctors. make sure you are at the home page so it searches all of the subject areas - people post different things in different places, I have seen people discussing Georgia recently.
as far as doctor experience - 400 ANs is definitely good but seems like the cystic ones are more complex, so you may want to also seek opinions from some AN docs outside your home area and investigate how your insurance may cover that. get the list of questions that ANA recommends, and then further tailor the question list to your case. take lots of notes, it is a lot of information to digest.
Waiting for the 3-6 mo MRI is good to see if yours is currently growing before choosing a next step. Many of them are not growing for years at a time (many studies showing no growth for like 50% of them for multiple years of monitoring), and you are young enough you should be strong for surgery for many years to come, if that's what you choose.
They can however cause more symptoms / damage even when they are not growing - like damaging hearing further etc. So that is something to consider.
Good to focus on getting in better physical condition knowing you may have a surgery coming. Taking positive steps like that helps reduce the stress. Good to build lower body strength and stability to help w/ the wobbly days early post op.
(I had mine removed in July - 1.4cm - feeling great !! did lose hearing but am managing fine)