newly diagnosed ....intracochlear AN

[thedales7]

Hi everyone.....I was just diagnosed yesterday with an AN which , I am told, is contained by the cochlea bone and that makes it les susceptible to growth...I am in watch and wait status as my surgeon (Dr. Douglas Green, jacksonville fl) says that with removal I WILL be left with complete hearing loss in my right ear. I have been to at least 5 neurologists in the past 18 months trying to figure out what is going on and it wasn't until I completed vestibular testing (all abnormal of course) that Dr. GREEN looked back to my MRi only to find my neuroma.  It is such a struggle every day to"keep my head on" as it feels like a bowl of bricks on top of my body.   I am so new to all of this and any advice to help me be a better self advocate and deal with physical limitations would be appreciated. ?. That you so much for reading and I look forward to sharing with you!

[thedales7]

I should also add that I am 41 and have moderate to severe mid frequency hearing loss.  My doc has order a ct scan as he is disposing i may also have semi circular canal dehiscence.  It definitely makes for an interesting combination of symptoms! I am a lucky mom of 4 beautiful (but LOUD) children and I definitely need some sort of relief from this "feeling" all the time!

[clere]

I have also recently (June, 2013) been diagnosed with an acoustic neuroma that is in my cochlea.  It was not until yesterday when I went for a second opinion that I was told that the neuroma being located in the cochlea is rare.  The neurotologist that I saw said she had only performed surgery on two that were similar to mine. This is stressful because all the information says make sure to get drs. that are very experienced in your specific type of neuroma/surgery.  Adding to the stress is the fact that the first team of drs. did not even mention that neuromas located in the cochlea are out of the norm. Mine is growing so I am planning on having it removed, making the decision where and by whom is the major issue!  Anyone else out there have information relevant to this type of neuroma?

[Gearbox123]

Sorry to hear about your troubles for both of you guys , I have a very small tumor located right on the vestibular nerve not much hearing loss but bad balance, it's so odd how every tumor is so different in how it effects us all. My prayers are with you both. I live in NYC area and have a great support group, we have the best Doctors that come and speak about all different issues and concerns, try and see if a group is in your area , it's very helpful to have support and this site is great for information and support also. If you can get up to NYC to get a consult with A.N -E.N.T  Dr Roland, Dr Choe, and Dr Selesnick and the best around, you might want to check them out. Good Luck and I hope you feel better, Pete