It's a go! I have a surgery date!

stephaniep

Active Member
Today I visited the surgeon and it's a go, I can get a CI implant? The one thing I was a little disappointed about, the tests did not reveal a cause of my bilateral hearing loss? Is it common not to know a specific cause? For instance if it was genetic, would there not be anything to show it as such? I have chronic immune related conditions, could this have been a cause? How many of you alldeafers know the cause of your hearing loss?
Well, putting that aside, they showed me a sample of the implant instruments. The magnet and behind the ear piece was huge with the sample they had on hand? They are going to implant my left ear, but that is the side I sleep on, will the magnet cause me irritation or pressure? All I can hope for that it will benefit me, that I won't have any unwanted side effects, and that I will be able to hear to communicate with family, friends, and be able to function again in this hearing world. .
 

LoveBlue

Well-Known Member
YAY!

The cause of most hearing loss is unknown. I'm pretty sure mine is hereditary.

Did you decide which CI manufacturer to go with? Each of them have different internals and externals. AB just came out with a slightly smaller (than previous version) processor/batteries.

After surgery you will not be able to lay on your implant side initially. It is suggested you elevate your head the first week or two - sleep in a recliner or on several pillows. I bought a bed wedge and used that under my pillow to elevate my head. I only elevated for maybe a week, but it was about 4 weeks before I could completely lay on my implant side comfortably. I would use a travel pillow (on top of my regular pillow) to lay my cheek on and have the implant just off the pillow.
 

stephaniep

Active Member
Oh thanks so much, that is helpful to know that a lot of hearing loss is of unknown cause? mine could be genetic, (Mom got early HL, sister has some too, and my son was born with no hearing in one ear and the Specialist said it was genetic,? A prior ENT told me mine was genetic as well, and immune related since I already suffer with immune related issues.?

I'm hoping you mean not sleeping on implant side is just temporary just after my surgery and that I can later do so if comfortable? Where is your magnet located, top, side or under your ear? Normally the Clinic has a live model who is wearing an implant, so people get a better idea, of how it looks and works, but because of Covid, they cancelled that demonstration for now?. I had emailed the woman back who was to go over my instruments, but it was Friday so she still hasn't gotten back to me? I am looking forward to that. It was months back, but now I vaguely recall that she had said something about one brand having more fails, another brand was too big for me, and one was preferable, but like I said it was a busy and an overwhelming day with so many other tests, and not hearing everything, that all I got before me is bits of visual memories
 

LoveBlue

Well-Known Member
Yes, the "not sleeping on that side" is temporary, at least for most of us. My magnets are above my ears towards the back of my head

Your clinic should have demos processors to show you and you can decide if one or more are "too big". Just be aware that Advanced Bionics just came out with their newest one which is a little smaller than the previous one and the batteries now curve inward so it's a better fit. If you're in Canada, your clinic may not have the Marvel demo yet. Not sure if all clinics in the USA have it yet.
 

stephaniep

Active Member
Thank you again, as I learn more and more, I'm becoming more comfortable and looking forward to the implant? I did see the actual brand and sizes of the implants. but like I said it was my first appointment with the clinic and all the tests, it was overwhelming, besides at that time I never knew if I would get this far, so I don't think I was concentrating specifically on one or the other? I do recall she showed me one that was too big, and I told her so. Also, one, she said had to have more repairs? I think she wrote down my preference, I have brown hair, so I think black would camouflage better than the white one? LoL, if I should go gray or white in the future can the color of the behind the ear instrument ever be changed without investing in an new implant? I will be hearing more about the brand types this week?
 

x1heavy

Active Member
I will throw in two cents with hearing loss cause.

In simple terms I was born three months early. Almost aborted actually when Mother Superior finally heard the heartbeat at 10 minutes to go left in a 2 hour exam they needed to know if I was alive in there or not. Anyway she heard it. a time later I was born at a weight and size that really does not itself support life. HOWEVER at 1 pound a few ounces they stuck me into the incubator for 5 months. I was not more than 4 pounds when home and the following month at 5 pounds and the third at almost 6 and so on. The weight gain and size gain was FASTER than the growing and developing nerves inside the ear to brain. All of that was impacted. There were other surgical procedures done, for example for a week they implanted three of the smallest needles on the planet to my right femoral artery (If you cut that in a adult that person is dead in about 30 seconds to a minute at most so no mistakes could ever be made) they introduced oxygen slurry and tried to take away waste to bypass the Lungs which were working too hard as well as the heart to be under control again. (It would run up too high as the oxygen dropped, its already very high in babies) It was a extreme life support system in those days. A gamble.

If they had to abort with me still alive it would involve a partial induced birth followed by a sharp scissors snip to the neck and done. The parts are then chopped up and sent to the various labs where they are useful. The rest disposed of.

The problem for the surgeon is if they did the process and found I was heartbeat and breathing well, the law would prevent such a thing to happen. And it would have been quite a big mess in many ways.

The bill for that kind of care was thrown away into the trash can. The figures of those days in what the dollar was worth then (Much more than it is today) that was the only place for such a bill. You could work and live three life times and never pay that in full. Not too many got to survive premature etc.

Anyway. In those days Sign Language was essentially prohibited. (They taught deaf etc using oral only for obvious reasons) and I had no gain in education or language until about 5 to 6 years old. A doctor was called to see if I am retarded and to be sent to the State forever with no education etc. Or am just deaf. Well they found I was deaf. J. Hopkins got involved at that point.

Columbia MSD in Maryland was being built I would be one of the first 63 students admitted there in Sept of 1973 when it opened. It was also the first of any education other than what I gained in Baltimore and other places up to that time which was not very much. The hearing schools tried to have the special programs but its essentially a place to warehouse deaf and dumb and others out of the way for the day.

Back to hearing cause. Its bilateral. There was eventually skilled doctors examining the hearing system in both of my ears in those days and decided I had some left but word comprehension was not good due to the lost nerve connections back there. In certain noise situations my hearing is absolutely normal But no good above a certain pitch so it's a interesting case. Its pernament. I am big and strapping now and still have most of what I had then now in terms of hearing but continue to lose some hearing to profound deaf 120db or higher on the chart as the years progress towards 60+ of age. That does not bother me too much as hearing aids provide the boost I need anyway. Trucking is key with the DOT medical requirements at 500, 1000 and 2000 hertz to be at 40db or better with or without hearing aids. What they dont know is that I can hear about 250 or lower at 20db or softer. The lower the better. Makes me a basshead in music. =) Or engines. Big ones.

I am the first deaf in my family line. If there were others they were not recorded because in those days prior to a certain year deaf were warehoused or insitutionalized with nothing for them except food and a bed plus a little sun.

My note is a little bit long for some and maybe a little wobble to and from topic. However there is alot going on with nerves between ears and brain. Even if you had them what does the brain now have to work with in order for you to hear something useful? Thats the kicker.

I consider those and certain other surgeries pretty big in terms of what they might have to use to put you to sleep. DO not forget to ask specific questions. When I had my last surgery to replace a failed bone joint, they completely paralyzed me and put on a life support machine for the two hours needed to do the work. Coming out of that was not good for everyone involved however they used very good medicines and it worked out. (Versed for memory and Demerol IV for pain control post op for a few hours) I'll have a few more surgeries in the near future anyway. When they took the breathing tube out the body restored several reflexes and its good I had a empty stomach to clear that out.

Thats the next thing. When you come out of surgery in recovery if they already know you are deaf, they will do things with you a little bit differently to gain your yes, no or obey simple commands until you clear out and function properly. What happens in recovery usually stays there.

It will involve a process to get your new implant or implants going to where you can use them in every day life. and probably restrictions in the beginning. Its important you follow them where possible because its all the work and skilled to do this job and everyone wants it to heal properly and not get messed up.

Good luck!
 

stephaniep

Active Member
Thank you for sharing your story. Sounds like you have been through so much and have come a long way. it's a miracle you are here encouraging others. Thank you for your response and good luck to you also. May Your hearing stay stable, so you can get by on hearing Aids.
 

LoveBlue

Well-Known Member
I'm only familiar with Advanced Bionics. We cannot change the color of the processor, but we can change the color of the headpiece. I currently have Petrol which is a very dark blue. When I'm eligible to upgrade to the new processor I plan to get the Ocean Blue - a bright blue.
Though this says child, the adults can also get these colors - and I know many who are getting them. I'll post the "adult" colors in another post (and, yes, some kids are choosing the adult colors)

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stephaniep

Active Member
That is such a lovely blue color and I love the sand beige.. When I was at the doctor on Friday they showed me a big white one and when I asked if they come in brown, she said they only come in black and white.. I will find out more today hopefully
 
Today I visited the surgeon and it's a go, I can get a CI implant? The one thing I was a little disappointed about, the tests did not reveal a cause of my bilateral hearing loss? Is it common not to know a specific cause? For instance if it was genetic, would there not be anything to show it as such? I have chronic immune related conditions, could this have been a cause? How many of you alldeafers know the cause of your hearing loss?
Well, putting that aside, they showed me a sample of the implant instruments. The magnet and behind the ear piece was huge with the sample they had on hand? They are going to implant my left ear, but that is the side I sleep on, will the magnet cause me irritation or pressure? All I can hope for that it will benefit me, that I won't have any unwanted side effects, and that I will be able to hear to communicate with family, friends, and be able to function again in this hearing world. .
I have no idea why I lost my hearing , I think it's genetic since my bro is HOH too , the doctor told me they just don't know after ruling out other causes like meniere's and tumor
 

zephren

Well-Known Member
Oh thanks so much, that is helpful to know that a lot of hearing loss is of unknown cause? mine could be genetic, (Mom got early HL, sister has some too, and my son was born with no hearing in one ear and the Specialist said it was genetic,? A prior ENT told me mine was genetic as well, and immune related since I already suffer with immune related issues.?

I'm hoping you mean not sleeping on implant side is just temporary just after my surgery and that I can later do so if comfortable? Where is your magnet located, top, side or under your ear? Normally the Clinic has a live model who is wearing an implant, so people get a better idea, of how it looks and works, but because of Covid, they cancelled that demonstration for now?. I had emailed the woman back who was to go over my instruments, but it was Friday so she still hasn't gotten back to me? I am looking forward to that. It was months back, but now I vaguely recall that she had said something about one brand having more fails, another brand was too big for me, and one was preferable, but like I said it was a busy and an overwhelming day with so many other tests, and not hearing everything, that all I got before me is bits of visual memories
Good luck with your surgery and recovery.

I know there are different brands. Didn't know they are different sizes a factor in the decision.
 

stephaniep

Active Member
Thank you for the well wishes and all your replies. Well, authentic, I hope I won't regret my decision either, I guess the end result can be different for individuals, as for me I hope the implant will be a success. At this point all I can do is hope.
I am getting the Naida CI Q90 sound processor to start and when the Marvel is available, it will be changed to the Marvel. Apparently the magnet cover is flatter in the Marvel. Just pray it all works out.
 

LoveBlue

Well-Known Member
Thank you for the well wishes and all your replies. Well, authentic, I hope I won't regret my decision either, I guess the end result can be different for individuals, as for me I hope the implant will be a success. At this point all I can do is hope.
I am getting the Naida CI Q90 sound processor to start and when the Marvel is available, it will be changed to the Marvel. Apparently the magnet cover is flatter in the Marvel. Just pray it all works out.
You'll love the Marvel. I've been reading great reviews on FB and AB's forum. I have the Q90 - and it's good, but I can't wait till I'm eligible for the Marvel (a year from now when my first CI processor's warranty is up). What colors will you get (for Q90 and M90)?
 

stephaniep

Active Member
Thank you. LoL. keep the encouragement coming.
LoveBlue, well since I would like color to blend with my hair, it was a toss between the sand beige and the chestnut brown. The one that was most suited for that right now was the chestnut, so she said she will be ordering it after surgery? I have no idea what my temp color will be but I assume it is black or white?. The Audiologist said the Marvel has already been approved here, so it will be here shortly.
 

cdmeggers

Well-Known Member
I am still anxiously waiting for my Marvels. I don't know if anyone has gotten the Lava Red yet, so maybe that's part of my order's hold up.
 
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