HearPeers Heroes Adam Posted August 5, 2015 HearPeers Heroes Report Share Posted August 5, 2015 Hey everybody Let's give Mary Beth a huge congratulations as her story has been featured on MEDELS BLOG. Congrats. Pretty cool that we have a star on our hands. Adam Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 5, 2015 HearPeers Heroes Report Share Posted August 5, 2015 Thanks Adam. Med-El contacted me and asked me to share my story. When I was searching all over for information about CI after transcanal labrynthectomy and long standing subsequent deafness in that ear, I could only find a tiny bit of information. I hope it helps others like me when they are considering CIs. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted August 6, 2015 Author HearPeers Heroes Report Share Posted August 6, 2015 I am sure it will I have had a labrynthectomy on my left ear as well as 5 fistula surgeries. You are the only person that I know that has had a labrynthectomy and fistula. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 6, 2015 HearPeers Heroes Report Share Posted August 6, 2015 Cool Adam. Let's talk shop. You read my story about stapendectomies, fistula repairs and ultimately a transcanal labrynthectomy. Then dead ear for 24 years. CI implanted in February and my dead ear has been magical. I'd like to hear your story. There doesn't seem to be many with our story out there. Mary Beth Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted August 6, 2015 Author HearPeers Heroes Report Share Posted August 6, 2015 No there sure doesn't. Started losing my hearing in my early 20's in the left due to the fistula. After 5 surgeries over 5 years it left me with profound loss in that ear. By this time, I started losing it in my right. Was using a bi-cros hearing aid as well from phonak. It leveled off at borderline severe and stayed that way After a few bouts with BPPV and another fistula in 2009. My ENT said I basically had the option to put up with the vertigo or have a labrynthectomy. I went with the labrynthectomy as nothing had helped to that point. Even went through vestibular rehab for 6 months. In 2011, over a period of about a month, the hearing in my "good" ear took a nose dive. I just thought I needed a new hearing aid so went to my Audi to get a quick test and order the new aid. Since the drop was so significant over such a short time, I had to go see my ENT that afternoon. Spent a week on high dose steroids but no change. This was in November. I tried a few hearing aids but the loss was too high. Was silent until my CI evaluation 2 months later in January. For me it was a no brainer. I new a great deal about CI's plus the history. The surgery didn't phase me after having had so many already. I had my 38th last week. 1st surgery was in April and 2nd was in late May 2011 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 6, 2015 HearPeers Heroes Report Share Posted August 6, 2015 The transcanal labrynthectomy was the best decision ever to get rid of the vertigo issues. I just never thought a CI would work I that ear. I am thankful for all of the advances in CI procedures, electrodes, etc. I used to joke that my right ear was only good for holding up my glasses. Now it is my best hearing ear. Go figure! Thanks for sharing Adam. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted August 6, 2015 Author HearPeers Heroes Report Share Posted August 6, 2015 I was a little hesitant to go through with it. It did get rid of the vertigo but I went through hell. Had to relearn how to walk. Right after the surgery, even blinking my eyes would get me violently ill. All that being said, now I don't regret it. No more vertigo but it took some time to adjust. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 6, 2015 HearPeers Heroes Report Share Posted August 6, 2015 Wow Adam that sounds like a rough ride. I had been so I'll with vertigo that I actually surprised the surgeon to how well I did post op from the transcanal labrynthectomy. I think I had a lot of practice dealing with dizziness by then. After you fully recovered from the labrynthectomy, how was your balance? Did you hesitate to u ave the CI surgery in the only ear that still had balance organs working? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted August 6, 2015 HearPeers Heroes Report Share Posted August 6, 2015 You two - not a time to be satisfied with yourself: Pulitzer is waiting for you! Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted August 6, 2015 Author HearPeers Heroes Report Share Posted August 6, 2015 My balance was fine once I fully recovered. Even acted in a play using my martial arts so there was jumping and spining with a weapon and didn't have any issues. Every once in a while I have a balance issue here and there but for the most part I don't even think about it. I did not hesitate at all. The second they got the approval, I said schedule it. My surgeon has operated on me a number of times. I had and still do have 100% confidence in him Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 6, 2015 HearPeers Heroes Report Share Posted August 6, 2015 Thanks Adam, I am going to have to decide when and if to get my second ear implanted. I'll see what the tests show at 6 months post activation in August and go from there. I am not anxious about giving up the residual hearing I have in that ear. I am cognizant of the fact that my left ear has all my balance organs and do not want to jeopardize anything balance related. Thanks for sharing so openly. I appreciate it. Mary Beth Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted August 7, 2015 Author HearPeers Heroes Report Share Posted August 7, 2015 How much hearing do you have in that ear? As far as Balance, you shouldn't lose any. Technically the semicircular canals sit on top of the cochlea and not a part of it. Some people might get a little dizzy after CI surgery but most don't. I had already had my labrynthectomy before my CI surgeries and didn't have any issues. The benefit of 2 cis compared to 1 is huge. People have asked how I would describe 2 vs 1. I would say that things sound much clearer, crisper and fuller. Sound location is much better as having both ears it is much easier to locate where the sound is coming from even in a noisy environment. Not knowing how much residual hearing is left in your other ear, I would just say that if the residual hearing isn't really giving you any benefit, why try to keep something that isn't working? Another thing to remember is that MEDEL has the best track record with their electrode arrays in preserving any residual hearing you might have. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 7, 2015 HearPeers Heroes Report Share Posted August 7, 2015 Hi Adam, My other ear qualifies for an implant too. With my hearing history, trying to save whatever residual hearing I have will not be a factor as my loss is progressive. I'll know more after my August appt with my surgeon. I'll report back after that. Thanks, Mary Beth Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted August 7, 2015 Author HearPeers Heroes Report Share Posted August 7, 2015 Good luck Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 7, 2015 HearPeers Heroes Report Share Posted August 7, 2015 Thanks Quote Link to comment Share on other sites More sharing options...
marcia gaubert Posted August 16, 2015 Report Share Posted August 16, 2015 I enjoyed reading your story. Thank you so much for sharing it. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted August 16, 2015 HearPeers Heroes Report Share Posted August 16, 2015 Thank you Marcia. Quote Link to comment Share on other sites More sharing options...
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