Mary Gorton
New Member
- Joined
- Jul 27, 2016
- Messages
- 14
- Reaction score
- 3
Hi, I just had a Med El CI put in two weeks ago with hopes to gain some hearing and relief from my terrible tinnitus. I have NF2. For those who don't know what that is, it's a genetic disease that the hallmark of it is bilateral vestibular schwannomas (acoustic neuromas). I had my left side's tumor debulked last summer, and went deaf. The first Surgeon said he kept the auditory nerve intact and that my face and hearing would be back to normal in 6 months. No such thing. He was so unfamilar with NF2. Anyways, now I'm being treated at Mayo in MN by a team that is well-acquainted with NF2, as it's very rare. I was told I was an excellent candidate for a CI, and the Med El specifically, because I wouldn't need remove it for MRIs, which I will be getting at least once a year for the rest of my life. I'm 36 by the way.
Anyways, I went in for activation yesterday, and nothing. Today we went 4 times the volume for each of the 11-12channels, and went 'live' and cranked it up t 120. I was told that people usually get sound at 15-30. Anyways, it's a failure. My nerve was too far gone. It's a big bummer, as I was really excited and pushing for this all spring, now I have all this stuff in my head with nothing to show for it.
Has anyone had one removed due to failure? The audiologist said the ENT(surgeon) probably would say keep it in, but I'm not fond of the implant disc above my ear...especially if it's not functioning.
When I have to deal with my other tumor, we'd most likely put an ABI in during tumor resection. I'm told when that happens, due to the nature of NF2 tumors, I would be left completely deaf, and I've accepted that someday I will be. Anyways, my main question is if anyone has had one removed...
Thanks in advance,
Mar
Anyways, I went in for activation yesterday, and nothing. Today we went 4 times the volume for each of the 11-12channels, and went 'live' and cranked it up t 120. I was told that people usually get sound at 15-30. Anyways, it's a failure. My nerve was too far gone. It's a big bummer, as I was really excited and pushing for this all spring, now I have all this stuff in my head with nothing to show for it.
Has anyone had one removed due to failure? The audiologist said the ENT(surgeon) probably would say keep it in, but I'm not fond of the implant disc above my ear...especially if it's not functioning.
When I have to deal with my other tumor, we'd most likely put an ABI in during tumor resection. I'm told when that happens, due to the nature of NF2 tumors, I would be left completely deaf, and I've accepted that someday I will be. Anyways, my main question is if anyone has had one removed...
Thanks in advance,
Mar