CI - connected

will tell you how it all began with my hearing loss I mean. When I was 0 - 24 1/2 I had a mild hearing loss infact most people couldnt tell expecially since i had good speech. It was always a self hate thing I was extremely defensive over it and that followed me for the rest of my life. ACtually, if i had utilzed the resources that was out there I would have been better off. Expecially at Saint Francis. With my other health drama it just added to the non acceptance.

At 25 ( student teaching year) I had a sudden loss which became ( 40 decibles loss which made it moderate)... still i was able to hide it pretty good, but i was missing a lot expecially in teaching.

At 35 it was 2 days before Halloween, 2005 on a Friday at 2:00 i was at work when it happend... there was a tremendous amound of tentinites (sp) and total hearing loss. my supervisor drove me 1/2 hour to my ENT there i underwent a hearing test which came back nothing. I was put on preizone treatment. If u ever had predizone well let me tell you ive had more than my share over th years. Predizone makes you gain weight and cause hair to grow where most women wouldnt want it to grow. After a month of Predizone, the hearing only came back 32% which puts me in the severe ramge/// it makes telephone much harder. right now i dont have a telephone at home. I do have a captel at work inwhich I can call an operator they dial a number and type what the speaker is saying.. Alot of people do not like its rather slow and they can hear beeps... I did have one client's mother request another caseworker because they felt they couldnt use the phone. Its been hard. I actually had a client's mom request another caseworker because she didnt want to deal with the telephone. Its rough.

I will tell you a little about John Hopkins. On Feb 3rd, I had my consultation with my Audi, Steve Bewdish. He is really nice. Steve at the consultation reassured me on a lot of my questions for example the side affects possiblities that I read. For Example, Meneginties (sp sorry), allergic reactions, body can reject the implaint and facial spasms.

I found out the possible side effects are about 1%... and im not vain but the one i was worried about was the facial spasms.

Once I did the consultation; Things I needed to do were the following: I did the audiological assessment; I had an MRI test down but JH needs the original films. So I have to see if i can get them. If JH approves then i dont have to ahve a ct done; however, i have a feeling they want to see my left ear and i beleive the mri only did the rigth. ( the left ear is most likely where the implant will go).
The Bonic Ear Assoc. Steve showed me the 3 different devices to choose from and i seem to favor the rechargable one.

Through an email from Steve i was told Given my history of "dizzyness" that we discussed at my last appt, he is recommending Dr Charles Dellasantina who has a dual interest in both Cochlear Implantation and vestibular issues. someone will be in touch soon.

Isnt Dellasantina such a dreamy name... You remember my dizzyness from school dont u mosty at Saint Francis. I never was quite sure you beleived me when i wasn going through that or maybe it was that u didnt know how to help. No one really does its all caused by stress.

Steve also gave me alot of people with CLs to talk to over the net. I still want to meet someone face to face who has one... do you know of any?

My first stumbling block the mri scan that was done last thankgiving before john hopkins... were not acceptable because they did not show good cuts/angles. Therefore, I am scheduled locally to do a catscan on February 28 at 7:30am.

In another appointment with meeting with Steve (audi)
I saw my audi, Steve Bowdish first. He took me to a hearing booth where I met Tiffany who did the audi test of both ears. They put a hearing aid in my left which felt strange because i never had anything on that side before. They were suprised how much I was able to pick up (on my right ear) because of the amount of lose I had. I didnt do too bad with hearing noise after awhile it all sounds like the tentnities anyway. I was able to hear speach but not distinguish the words.


Two things you may hear about CL. Mapping which is is the process by which you and the audiologist figure out how to adjust the current and volune on each electrod of the implant so that sounds (speech and environmental) is the most natural for you. 2/ and prom stim test ( talk about that later).

Im looking into an New Bionics (manufacturer) auria processor and 120 stradegies which is the newest cl out there right now and the batters can last up to 7 - 12 hours at a time. One of the concerns i had was the processor would be on my ear and its actually 2 times bigger than my hearing aid.. my ears are very small and well i wasnt sure if it would even be about to hold a processor. The other options is to have the processor hook on to my belt, but i cant see that either.

Later met Dr Charles Della Santa.. he isnt quite as dreamy as his name but he did have a nice smile... He is aquanted with my ENTs in Hegerstown. Anyway, He looked at my scans as well as showed me my scans and someone else's scan to compare. I never new that but attach the coachlea are vessles that control balance. Well, my scans showed that I did not have these vessles. All these years not knowing what caused the dizzy spells and now i know... I was missing organs that I didnt know I was missing.

We did tests for the dizziness .. he would shake my head literally and look in my eyes. He would tell me to look at his nose while he was shaking the head. I wore funny goggles im not sure why. He would ask me to stand in certain positions and promised he wouldnt let me fall. Then he wanted to make another appointment to have hot and cold water in my ears. That appointment was at 3.

I had my appointment at John Hopkins yesturday, July 25th. The appointment was at 8am so we left at 4 plenty of time to eat breakfast before the appointment. I saw both my surgeon (charles della santina) and my audi (steve bowditch).

I was to have an electrode placement and promontory stimulation testing. This test is a preoperative assessment of the auditory pathway before cochlear implantation. . This method can prove the intactness of the auditory pathway and help the surgeon in decision making before cochlear implantation.

Since i still have a little bit of hearing left in my right ear they were thinking of implanting the left ear (which i never never never had any hearing in that ear). I always was able to improvise for the loss.

I entered an examining room whre they put a drop of Anesthesia on my ear drum then inserted a needle in my ear. Steve then proceded in doing a hearing test. The only thing i was able to make out was pulses and took a very long time to even get those.

At the end, they thought that the right ear may be the better ear to implant. They do want to do another mri to look at the valves in the left ear before saying ok the left ear is not going to work.

We waited and waited for about 3 hours and still no mri and i was alloud to do it in Chambersburg so i thought thats fine there was no gaurentee that i would get into to do the mri... i didn feel like waiting for 4 or 5 hours and still no mri.

Yes, the right ear would be a good choice because it is already known that the cholea works fine in that ear. If i do get the cl in the right ear the first month or so I will not hear anything. Presently, I can hear some environmental noises without the hearing aid. I can hear my alarm clock and in most cases my microwave.

So I will make the mri appointment, send the films to JH and hopfully this time i wont have to wait 3 months for the next appointment.

I can understand the doctors they want to implant a sure thing not a possible thing... i dont know if i would ever do a bilateral cl. What i dont want is just to hear noise... that would drive me nuts. The most annoying noise i would not mind missing are birds... please.... end of discussion. There is no way to try to see if the left ear would be a possibilty... why? the cost, time, scaring... the emotional trama and oh im already thinking im going to have a goofy haircut for a while.

I got the mri done later in the month and it came back as the vains in my left ear is much too thin to even think about a CL. That leaves my right ear which is scary because i can still hear things like my alarm clock, microwave... voices but not always the entire conversation... for about a month after the cl I will be totally deaf because they will wait for the surgery to heal before activating it ( begin mapping).