My Story

[Mo W]

Hi Everyone,

 

My name is Mo , I am a 28 yr old science teacher in NY and this is my abridged story.

After a few years of intermittent tinnitus ear pressure, and vertigo, I was diagnosed with unilateral Meniere's Disease at the age of 18 in 2007. Over the course of the next 9 years, I was on diuretics, a low sodium diet, steroids, steroid injections, etc and things only really helped to slow it down. My ENT very quickly realized that this was a rapidly progressing version of Meniere's ( instead of the many decades long progression that most people have) and referred me to a Meniere's specialist in 2015 and she was very aggressive with treatment to try and get a handle on things, specifically the hearing loss that I was starting to notice, but nothing seemed to help. By this time, I was getting 6-8 hour long vertigo attacks 3-4 days a week, essentially rendering me non functioning on a regular basis. Left with only surgical options, I chose to have a labarynthectomy instead of having a shunt put in because I wanted to ensure that vertigo would no longer occur.... even knowing that I would be deaf in that ear as a result of the surgery. In my mind, life without hearing is just a different form of life; life with vertigo is not life at all.

 

I wont go into too manhy details, but in the end of August 2016 I had my labarynthectomy. Anyone who has gone through the procedure can attest to the unimaginable hell that ensued in the weeks following the surgery ( CFS leak, Pain, TMJ, Bells Palsy, No Balance, Shingles outbreak.Deafness, Anaphylaxis etc just to name a few of things I had to deal with). Thankfully at this point I am mostly recovered as best as I will ever be, but thank gd I have not had a single vertigo attack since the days following my surgery... I have never gone 10 months without vertigo since I had my first attack in high school. I have been dealing with the deafness on one side as best I can, but my doctor has been pushing me to get a CI as soon as possible due to the fact that the sooner you get it after sudden hearing loss the higher likelihood of it "working" and I am really having a difficult time with directional hearing and hearing in crowds.

 

I am scheduled to have my CI implanted this coming Wednesday (7/12) and I decided to go with the Med El implant ( after many months of trying to find research of which company would suit me best and finding little to no data that is relevant to my specific situation).  I really hope its the right choice for me, but I guess there is no turning back now. I am getting one of each of the two processors (one  behind the ear/on head and the one thats only on the the head).

 

I am hoping there is someone out there on this forum that can provide some insight on what to expect in regards to activation and the hearing two separate types of sounds coming in from the two ears, etc .  Ive heard everything I can from the audiologist on what to expect, but hands on experience is where I really want to hear it.

 

I look forward to joining the hearpeers community and contributing as best I can!

[Mary Beth]

Hi Mo!

 

I am in NY too!

 

I had Menieres also and also had a transcanal labrynthectomy.

 

I am not single sided deaf though so I will let others respond to those questions.

 

Welcome to the group.

 

Wishing you the best!

 

[Mo W]

Mary Beth,

 

Did you receive the CI at the same time as the labarynthectomy?   

 

If not, how long after did you get implanted?  I am curious how the aftermath of the CI surgery went. Knowing how horrific the post- labarnythectomy was, I am very nervous about the CI surgery next week. From what Ive heard and read, the normal side effects of a CI surgery are not always seen in those that had a labarynthectomy already.  Is there any truth to that?

[Mary Beth]

I did not receive the CI at the same time as the labrynthectomy.  In fact, that ear was completely deaf and unable to be aided for 24 years before it was implanted with a CI two years ago.  Since that side has no vestibular function due to the labrynthectomy, there was no concern about post operative vertigo or dizziness.  The surgery itself and recovery were by far the easiest ear surgery I ever had.

 

My left side was implanted 8 months later and has a completely intact vestibular system.  That surgery was even easier and the recovery was a piece of cake.  No complications with dizziness/vertigo at all.

 

I was very fortunate with both surgeries and recoveries and was back at work very soon.  I hope your experience is similar.