February 2002 Many people have emailed me asking how I am doing, so I thought it was time for me to do an update on how I am. :-)VERTIGO
Back in December of 1998 I had the VNS surgery done. Within 3 months the vertigo came back. We were not sure if it was due to the nerve not being completely cut, or if it was caused by my right ear, thus bilateral Meniere's. About 6 months later, during an ENG test, my left balance system showed 30% activity. I felt a second VNS from another angle was not an option, so I have gent injections done on average, every 6-8 months to kill what is regrowing of my nerve. How does it regrow you ask? My Dr. explained to me that the ends of the 8th nerve can piggy-back along the facial or hearing nerve and connect together. I have since learned that severed nerves can indeed grow back together.
Is my vertigo gone? No, the left grows back, I kill it off with the gent. But, I have Meniere's in my right ear now too. The vertigo from my right ear is not as severe, however it lasts longer than the left side. My eyes do not move when my right side sends me into a spin, so I can just lay still and watch TV or something, but these attacks tend to last from an hour to my longest 34hrs. But, I seem to only have about one a month.
On March 20th, 2002 I will be getting a labyrinthectomy because the time it takes the nerve to regenerate has become too short (4 months) so its very possible that I am not responding anymore to the gent. For those who don't know what a labyrinthectomy is: The Dr will go directly behind my ear, through the old scar I have from a decompression
surgery, and also through the missing mastoid bone that was taken out before, and totally destroy the inner ear. It is basically taking out the whole workings of the vestibular system and unfortunately, the hearing too. The two are all in one piece, the labyrinth, so the hearing cannot be spared. So, I will wake up with no more spins, but also stone deaf in my left ear. But, since my hearing loss in that ear is profound and I haven't heard any
sound in it in a couple years, it will probably not bother me.So, after this surgery, my left ear will no longer send the horrible vertigo signals to my brain! I do know it is a drastic step, but, I cannot live my life always wondering when that left ear will wake up and knock me flat on my bottom again. My right side vertigo is mild in comparison, that is why the Dr has agreed to do it. If I had not compensated so well with my balance and the MM in my right was not so mild, he would not do it.
HEARING
I went to bed one night last Feb. with only very mild loss in my right ear and woke up with moderate to severe loss. I basically lost 10 - 20 DB overnight. Just like that. This was extremely difficult for me because the hearing in my left ear was way down in the severe - profound range loss and my hearing aid was useless for that ear. I went to the Dr the next day and tried the steroids to see if those would bring the hearing back up (a course of steroids will usually help the hearing return). They didn't work, so I applied through H.E.A.R.S. for an aid. It took 6 months to get my aid, and in the mean time life was hard! I could only hear ok if I was at home, it was quiet and people spoke in a loud voice. I became very isolated, it was so much easier to be alone than deal with the frustrations of trying to hear. Before I got my aid I was in a class, and I tried to record it. Well, if you can't hear the lecture, you can't hear the taped lecture either. So, I sat through the lectures writing things like "I can't hear what he is saying... Bla Bla Bla" My grade dropped form a B to a C because I could only study what was in the book and not what was said in lecture. During the summer I took a self paced course, which worked fine because I studied at home and went to class only to take a test .
The day I decided to stop feeling sorry for myself and speak up instead was the day my family stayed over at church for a potluck. There I stood, just hearing NOISE, feeling so alone in the middle of a large group. I went outside and sat on the curb and cried. My mom could not talk me into going inside, it was easier to be out there alone than to smile and pretend. The pastor's wife sat down and talked to me. She hit the nail on the head. She said "Cathy, we don't know! You need to tell people what you need." I went home and made up some cards to hand out. They say this:
HOW TO SPEAK TO THE HARD OF HEARING
Please get my attention before speaking to me
Please face me
Please speak slowly and clearly
Please rephrase rather than repeat
Please talk directly to me (I had incidences where people would ask my son something instead of me, VERY insulting!)
Please don't cover your mouth when talking
Please move to a quiet corner with me so I can hear you
Please stand on my right - my left ear is deaf
Now I give these cards to people. They tend to glance at them for a second, like you would a business card, and try to hand it back. But I would push it back and ask them to please read it. After they did I usually get a WOW reaction and they want to keep the card.
I now have a hearing aid for my right ear. It never ceases to amaze me how it is like shutting a door when I take the aid out! The phone that rings so loud, the cat meowing, the sound of traffic on the street, I can not hear when I take it out. My alarm clock that always blasted me right out of sleep because it is so loud, I now sleep right through it because I hear it as a soft beep instead. I am getting a vibrating one in the next couple weeks, because my daughter has been late for school too many times. Should be interesting LOL will scare me to death as it shakes me awake!
I don't know if I have lost anymore hearing in my right ear since that night a year ago. My last hearing test showed it was holding steady. I will be getting it retested in April after I recover from my surgery, if it worse I will get my aid readjusted to the loss.
I have found another wonderful support group, these people are helping me with my hearing issues. The SayWhatClub is a wonderful place to meet others who are hard of hearing and can give great advice! Check them out if you are dealing with this issue too.
COLLEGE
YES!!!! I DID IT!!! I graduated in December of 2001 with my B.A. degree in Psychology! It was a long hard road, but I finally did it and feel great!!
I have not tried to find work yet. I feel like I am in a holding pattern here, waiting for the surgery to help control things. Once I get that done and things settled I will be calling vocational rehab to see how they can help and try to find work in some form of counseling with people dealing with chronic illness. I am only going to try working 2 days a week to start out, I am still unsure if my body will allow me to work.
So...... That is what is up as of today. I have learned to live with my Meniere's, instead of it living me. And for now, my new issue is learning to live in a hearing world when I can't hear so good.
Thank you to everyone so kind that has emailed me asking how I am doing! :-)