One Step Further...

Today marks a great day! 

I was able to obtain the papers I neededfrom my wife's former employer to verify that I was covered under a group ppolicy. By this, I can just add Medicare Part B at anytime. Combined with my current group policy and with Part B, I would at least get 1 Cochlear Implant without much of an out of pocket expense. 

I have learned that one can get bilateral with Part B. I am still pushing for this. I hope with the setback that things will start looking forward. 

It's scary I'm sure. Nightmares about surgery have finally gone. I feel confident and hope to have the Fatih I need in God to move forward. This is the only way I can conquer my fears of the unknown territory. 

I'm grateful for the support of other deaf-blind individuals who have gone before me. These are the folks with Usher Syndrome like myself who have been supporting.  I'm grateful for their stories and their experience. It is the main reason I am doing this: Is because others like me have done so and have had success! 

I mean if I were not blind, I probably wouldn't do this. I did very well as a Deaf person until my vision started to fly south on me. 

I hope I can continue to remian strong and keep the focus upon the results and not the surgery itself. Easier said than done.

Insurance Responds

I recieved word yesterday that my group insurance would only pay $35K for lifetime for a Cochlear Implant. That doesn't even cover the cost of half of one!

It's been a rough week.

I guess I'll back up a bit...

I applied to Medicare Part B to add in as a component as paying for the CI. Only then was I denied. I wasn't given any real explanation other than the standard form letter. So upon calling and finding more information nothing else was further provided. Eventually, I was given a letter from the Administrator at the local SSA office in which explained what happened. I had to go back to when i First qualified for Medicare to prove that I had coverage so that I can add Part B. at anyt ime. IN doing this, this means that I'd hav eto go back to my wife's previous employer to verify that I was covered by a policy at the time I first became eligible for services and Part B. This shouldn't be a problem but geez, why not tell me in the first place?

I am purusing this path. However, this would only pay for 1 CI. I would like 2. Many people with Usher Syndrome that I have talked to do extremely well and much better with 2 CIs. If I wasn't blind due to Retinitis Pigmentosa, then I wouldn't have much of a problem since I had perfect lipreading. Now, I see people that at times, look more like cartoons, that I really cannot see how their mouth is moving. Nor do I hear speech to really match mouth movement with sound. Speech sounds much like the teacher in "Peanuts" (waaa, waa, waa) you kow.

I'm grateful for the fact that my wife is doing much better with her TBI (traumatic brain injury) after the car accident. This is probably one of the big pushers for me to start moving forward with the CI. I mean, I was geared for it a few years ago, but the accident took place and our world turned upside down. Now it's time for me to forge forward, try to imporve life, at least my hearing, in which I could imrpove communication methods and "hear" speech. Seeing my children grow up or at least being able to hear them again is important. My son plays the trumpet. I have never heard him play before. I haven't even worn a hearing aid in over 2 years. They are 10 years old and have expired their life expectancy. The audiologist 2 years ago said they would not benefit me and could not recommend a hearing aid for my right ear as I couldn't benefit anything.

So now my frustration makes a complete circle: why doesn't insurance pay for a medically necessary procedure?

Hospital Frustration

I am feeling frustrated with the hospital. I had learned this past Wednesday or Thursday that they HAVE NOT initiated the process of approval with SelectHealth. They seem to be doubtful we'd get any more support or money as they have had previous patients appeal without no success. However, my situation is more unique than different. Granted, I am deaf-blind which would pull some weight into the equation of getting more money from the insurance (I've battled them about 10 years ago and feel I can win again).

Everyone was confused of the day of the CI Evaluation, including my parents. We were told or at least hearing that if I had my group policy plus Medicare Part B that I would have no out of pocket expense. We thought that meant for a bilateral implantation. NOPE! It was only for one CI.

In many ways that is great. However, the group policy only covers $35K per lifetime so it doesn't matter if I go for it now or later with this policy. I still only get $35K as that is what the policy legally says they can and will pay, even if it's unilateral or bilateral implantation.

The more I learn the more I just want to run away, but I know I cannot run away. It's difficult not to think about this frustration and let my desire decline for getting implanted.

Cochlear Implant Evaluation

Thursday, August 18th, marked the trek to go through the Cochlear Implant Evaluation. It was something that I have been wanting to do for some time. However, with the accident and result of a spouse who has a TBI (Traumatic Brain Injury) that I have put this off. I no longer could do so.

I was grateful for my parents support as they were here for me.

The events of the day:

930AM:
I walked in to Clinic 9 where the audiology testing would be done. She asked me soem questions regarding my hearing loss. Then we went ahead for the hearing test.

First is was un-aided (no hearing aids) pure tone testing. I usually hate these things because of the tinnitus I have. Then she did some words. I swear she was saying I was hot and sexy!

Then she did the ear drum pressure. And then I heard "beeps" coming out of it. Never heard that my entire life. I hav eno clue what those were. Although I'm used to having the pressure checked. Then we went on to aided testing.

Testing was done with pure tones to see what I can hear. Then she did sentences. Again, I swear she said I was hot and sexy! I heard these sentences and I had NO IDEA what the heck she was talking about. I missed them all. Of course, I knew I had no speech discrimination. DUH!

Then we went into another room while inviting my parents and my lovely wife into the room. We got the results of the hearing evaluation. She said I qualify for the CI. Oh wait...

She did the bone conduction thing too...

Okay back to the rooom...

I was able to feel the internal component of the CI. Never have seen or felt one before. I didn't know there were two strings. one of them is actually made of rubber I think, which "grounds" me from electrical shock. Hmm...having second thoughts now....

I was able to view two different models, The Cochlar Americas Nuclus 5 (N5) system. The remote looks exactly like an iPod! COOL! The internal part is very thin and less invasive surgery, only a few inches instead of a full 6 inch. Plus, it is thinner so it does not have to bore so much into the bone to mount the implant. (Another plus).

Then we had to run over to the othe rside of campus for the MRI. We were a bit late but that was okay because they were behind anyway. Got my clothes changed and waiting IN the waiting room (you know, the front room of the office!). Here I am, the only person in a hospital gown and bottom scrubs. It felt awkward until some other people showed up and they were ladies wearing simliar clothes as I. LOL.

So when I got called back to do the MRI, the two technicians asked me if I have had one before. I said yes, back when I was 12 years old. They told me how long I would be in there. I asked them for a valium and she said "Your joking right?" Umm..no...but yes I was. I told her I ha dmy own "goodies' but forgot them at home. Had a great laugh on that one.

Okay so she and this other guy technician helped me navigate the room and on to the sliding board. They prepped me up and then they said stay still as possible. (okay no biggie, I'm thinking) Until I start moving in and realize my arms areover my chest but elbows and upper bicepts are touching the sides. I was really breathing hard . I'm thinking "Chill Dude! This is painless!" Tried to close my eyes and relax. Then all of a sudden I coudl feel the magnetic field. Then the vibration oh man, that kinda freaked me out as I was starting to have muscle spasms. I thought I was having a heart attack. LOL.

Okay that was done and over with, now rush to take care of Archer to reliieve himself as it is now after 1230pm. Gotta find a bite to eat before seeing the surgeion at 130pm.

So once we got into seeing the surgeon, a Resident came in and checked me over. He was kind enough to clean my ears. :) He did all the questioning of my hearing loss.

I'll admit, I was a bit peeved at my parents taking over as HE was talking to ME not them! Goodness, don't you think I know the story? So he wrapped those up on the notes and all.

Then a few moments later, the surgeon came in asked the Resident to summaries for him while he took notes.

Then he spoke with me. He was really surprised at the fact that I had a 105dB loss but my speaking abilities were just normal. He told me he is certain a CI would benefit me. He asked me soem questions on my hearing aids and all. I asked him how long it would take. He said 1 1/2 to 2 hours. I asked what if I went Bilateral? He said 3-4 hours. I explained to him some of my friends have been in longer but he said that he does 80 to 100 implants per year so this is his focus and can really get in and out of surgery. I expressed some concens which were easily resolved.

Once the appt was overwith we went to the surgery scheduler and all. We discussed options that we had to deal with to cover costs to pay this. Some of this is good some of this is bad.

So there we are...it was a great day. Now I can't wait. I sure hope the finances work out and that the insurance will cover more especially that I am both DEAF and BLIND and will go for bi-lateral.

Who am I?

Welcome to my Blog!

I am Darran! I am profoundly deaf and legally blind. I also have a wife who has a brain injury from a car accident.

I will be sharing my stories and use this as a medium to express myself as I cope and learn to deal with this situation.