CI side effects

pandaundercover

pandaundercover

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I'm trying to find ANYONE that has been having post-surgery side effects similar to mine to see if they have at least a diagnosis more than I've got.

So i was implanted in mid Sept 2010 and had typical side effects expected after CI surgery, until 3 days after I ended up with a high fever, vertigo, nausea, vomiting and the inability to actually get my head off a pillow for 2 days, and this lead to me being severely dehydrated. Then I took a antinausea pill in order to make it to the Urgent Care, where I was given another antinausea pill so I could hold down fluids and food. Symptoms went away after about a week total.

THEN 3 months later I get the same symptoms again, without the fever. My doctor just prescribed me antinausea and antivertigo drugs and told me to see my surgeon. My surgeon says it's all "normal" recovery and that I have Benign Positional Vertigo and sent me home to do some BPPV exercises. I've had the symptoms for a month now and I'm not seeing any signs they are going away. I've also got a rhythmic hum going off in my implanted ear around the clock, sometimes it's loud, sometimes it's soft. Not technically tinnitus, because I've had that for decades, but it's gotta be something else.

SO, I don't know what to expect? Is this really THAT common? because I haven't heard of many others experiencing it. Will it ever go away? A part of me feels my surgeon doesn't want to acknowledge it could be something serious. I'd feel a lot better getting a CAT scan or something and knowing there's no fluid build up or something going on. Either way, anyone else experienced similar symptoms?
 
Our member Hear Again, used to complain about that as a very debilitating symptom/

She has kind of dropped out here, so I don't know if they ever really did get it under control.
 
Sorry to hear of your troubles. I got my CI 2 1/2 years ago and am pretty much functioning normally at this point. Pretty much operating like the way I was prior to the implantation, except for having a little better / enhanced hearing and communication skills. Maybe it'll help that you go to some CI support groups in your area. Do you know any? And perhaps maybe doing some walking exercises would also help?
 
maybe circle ci forum have better information over there. hope you are feeling better.. no i am not a ci user.
 
Any kind of fever means you have an infection.

Your doctor should have tested you for meningitis. It is rare, but does happen to people that get CI's.

Most doctors will tell you to go back to your own surgeon since they do not know what happens during CI surgeries and don't want to get involved. Still, I suggest you get a second opinion from another CI doctor, which is kind of complicated.

A friend of ours had a CI and it backfired on her. She had similar symptoms that eventually lead to seizures, and two years after surgery she had her CI removed, all symptoms went away. There is a CI specialist in Boston that worked with her. The electrical stimulation did not work on her physiology the way it normally works on other recipients.

There is a possibility that your body will not accept the CI for various reasons, which happens more often than you think. The trick is to find another CI surgeon and get a second opinion.

My surgeon is a specialist in hearing & balance disorders, and is usually right on the money in diagnosing problems, but he is up here in DE. PM me if you want his name.


p.s. I had that 'hum' for about 2 weeks, it slowly faded to minimal. The humming is much worse in my second recent implant, but is fading as well. Pressure in the inner ear affects it.
 
I don't have a hum in mine it is like someone turned up the tinnitus very loud... I hope that it dies down. I lost balance on day 4 of the implant ( it has been a month) and now I'm going to start balance therapy. I did take anti nausea pills for a couple of weeks after the surgery but that part is okay now.
 
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