Recovering...

dizziness

I had my balance function tested about six months ago, and found out that I have normal function in my right ear and poor function in my left ear. It complicated my decision on the cochlear implant because my left ear is my better hearing ear. I've actually had the benefit of being part of a vestibular study at Hopkins, so the testing was free and I will get free testing again to see what effect the surgery had on my vestib function. I'm very thankful for that.

My doc, who just designed the world's first multi-channel vestibular implant (still a ways off for being ready in humans), recommended that I get my left ear implanted because of the risk. He estimated a 10-20 % of vestibular damage to my right ear, and impaired function in both ears would really be a mess. Then last weekend, just a few days before surgery, he emailed me and told that he thought the risk to my vestibular system was lower than he'd previously thought-- 5-7%. He said I could go either way, and that if I chose to do the right ear, I'd be able to keep the little hearing in my left ear and have a 90%+ chance of retaining my vestibular function. He said that I could play it safe with my vestibular system but then there would be no guarantees on the remaining hearing in my left ear, and that it would probably be destroyed. So after 36 hours of soul-searching, I decided to take my chances. (I have more hearing in my left ear than many getting an implant, considering I can still use the phone pretty effectively) This was a big deal for me since for the last six months I'd been almost certain I would do the left ear, since I didn't want to have increased vestibular problems.

5 days post-surgery I'm still dizzy, though it's not vertigo or Meniere's type dizziness. It's lack of vestibular system type of dizziness, which means the world moves when I move. It's too early to tell whether my vestibular system in my right ear is damaged or I'm still recovering, and my doc told me it would take a month to know. I've heard about a lot of people who've had dizziness post-op, and recovered just fine. While I'm a bit worried, I also have no reason not to be optimistic. There's still a lot of inflammation and discomfort in my ear, and I expect it will take a while for things to settle down. I'm able to walk around and function pretty normally, and I'll do vestibular rehab if necessary. I took my chances, and I'll have to deal with whatever happens as a result of that.

I will say that with a 10-20% risk I just didn't feel that was worth it. When the risk assessment was re-evaluated, I took that as a bit of a sign. He said a 5% chance of significant damage, meaning vestib rehab and compensation could give me normal function. There was a 2% chance of severe damage, meaning walking with a cane and never driving again, and I don't think I'll have to worry about that.

The fact that I'll hear out of both ears for the first time is very exciting to me, and it's a relief to still really be able to enjoy music and tune my guitar with my left ear, bad as my hearing in that ear may be. At the same time, I love biking, playing sports and being active, and I'd already lost a bit of my competitive edge when I started having vestibular problems last year. If I have to give up any of that because of my choice, I won't lie... I'll have regrets about changing my mind. But I opted for the bigger jackpot and the bigger risk, which tends to be in my nature anyway.

If anybody else has post-op dizziness stories I haven't heard yet, let me know. How did you deal with the dizziness? How long did it take to clear up? Did you have vestib rehab?

Honestly, I've heard of people who've gone back to work a few days after surgery. All I can say is, I'm really glad I'm on my summer vacation and I don't have to worry about that right now. I feel perfectly fine-- when I'm lying down. Any type of activity for more than five minutes makes it feel as if things are sloshing around and throbbing up there. On the outside it's healing up quickly but it's obviously taking longer on the inside. I'm totally spaced out and feel like a vegetable with a computer chip in it. Even with all this, I feel a lot better than I expected to five days post-op. I just have no clue how people go back to their normal lives so quickly.
 
R2D2, or any of you, ever experienced oscillopia? Ever since I began having more vestibular problems on the left side last fall, the world bounces up and down a bit on me when I walk. It's not much, but enough to get me off my game on a bad day. That hasn't been any worse post-op, but like R2D2, I have to watch how fast I turn my head, and I also tend to veer a bit off-course when I'm walking.

I feel like I've been floating all week, but hey, that's a lot better than feeling like somebody sawed my head open. It would not be an exaggeration to say I've watched more TV this past week than in the last year, and it's been very pleasant to just veg out. My mom is out visiting and helping me get better, and she has been a saint this past week. Happy mother's day to her!
 
Wow, You're going bilateral R2D2?

Yes, I'm almost 100% decided now. We trialled hearing aids in that ear but with no difference - I actually do worse with a hearing aid in that ear and the CI than with the CI alone but I don't want the other ear to go to waste by taking it out altogether. My audie also thinks that going bilateral will help me a lot in noisy environments.
 
R2D2, or any of you, ever experienced oscillopia? Ever since I began having more vestibular problems on the left side last fall, the world bounces up and down a bit on me when I walk. It's not much, but enough to get me off my game on a bad day. That hasn't been any worse post-op, but like R2D2, I have to watch how fast I turn my head, and I also tend to veer a bit off-course when I'm walking.

Can you define oscillopia? I'm not sure what it is although I'm guessing it's balance related. I didn't have balance problems prior to surgery but did have it after surgery for 3 weeks. Sometimes, when I lay down after going to bed the whole world span for a few seconds. It was really weird. However, this cleared up and I don't have a problem now. I hope this will be the case for you. Enjoy blobbing out in front of the TV - are you watching soaps? :giggle:
 
testing

You might want to ask for a balance test while you are being evaluated. My surgeon does it as standard on everyone whereas others do it just for high risk clients, where there is a concern that there could be a balance issue after implantation.
Yes my Dr. does them standard too.im very lucky as he not only is the head of CI but also balance and dizziness disorders at beth isreal,so I feel if not safe with him well informed and hopefully forewarned on what to really expect.I already am living with what Franz is going through on my bad days (didnt know it had a name as I just called it exagerrated head movement)so cant even imagine what it'll be after. Franz has your dr. tried you on valium?It works great on the inner ear, calms it right down, maybe it could help you temporarily.I was wondering looking at Franz's pic's. what happens when the hair grows back after surgery? how does the CI attach?Ive got really thick long hair.
 
going bi-lat

Yes, I'm almost 100% decided now. We trialled hearing aids in that ear but with no difference - I actually do worse with a hearing aid in that ear and the CI than with the CI alone but I don't want the other ear to go to waste by taking it out altogether. My audie also thinks that going bilateral will help me a lot in noisy environments.

Ive wondered how it would be having a hearing aid and a CI.My hearing aid is so powerful I often come home from store with a headache from the amount of useless loud noise. You must have done very well with your surgery and activation ect. to plan on doing it again.It will be interesting to see how you do.Are there others who are bi-lat. do you know?
 
I had my balance test this morning. My audie explained that they are really testing the other ear that is not being implanted because in a small number of cases the vestibular system can get damaged during surgery. However, if your other side is functioning okay then you can get by with that. It's more a risk assessment. It's cool that you have an expert on your hands, Tami Sam.

You might have to wear your hair in a bun or get a stronger magnet. I have a number 5, which is the strongest one in the Cochlear range. The surgeon hardly took any of my hair as my incision was right behind the ear. However, other people have different size incisions and in different locations.
 
hair cut

Here's a pic of me 3 days post-op, after the first time I could wash my hair again. I have long hair for a guy, and you can see it's shorter on one side than the other. Not too much was cut off, and though it's shaved underneath, my hair is long enough that it conceals the stitches and the surgery. I'll have to get a haircut to even the other side out soon. And I thought I would be wandering around with a half-shaved head for a while. Just tell your surgeon to shave as little as possible. Mine was considerate in that way.
 

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