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New user - new implant


christi1963

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Thanks Leigh,

 

Will be looking into those links- every bit helps.  Nothing is more helpful than hearing from others who have actually gone through and used this strategies or tools!

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Well we are all here for each other. ?

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Hi, and welcome!  Yeah, the tinnitus was definitely present after surgery...with both sides.  After my activation of my left ear (last July), I experienced a bit different than what I had recalled experiencing with my right ear - the noise I was hearing (with the processor on), was annoying and could caused headaches, but it subsided as time went by.  These days, I usually only notice the ringing in the ear when my processors are off. :-)  It's worth it. :-) 

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HI Christi

i have been bilaterally implanted for over 5 years. The doctors were thinking it might be Meniers. They said I was kind of on the fence with my symptoms but then decided it wasn't. I just had other problems that mimicked Meniers. I ended up having some surgery (not related to CI) to get rid of the vertigo. 

Very glad you found this forum as it is always easier to go through some challenges  when you can do it with people who understand and have walked in your shoes. Please keep us updated on your progress

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Hi Adam- Thanks for your support! Ya, Meniere's is a tough thing to diagnose unless you have all the symptoms and there is nothing else causing them- There is no definitive test that says - yes, there you go! My sister has superior canal dehiscence, which is nothing like Menieres in its pathology, but oddly we have similar symptoms! After many months of steroids and trans-tympanic injections, nothing helped. Pretty typical for Meniere's.

I got activated yesterday ( whoooo, hoooo!) And I have to say... yes, patience will be a virtue! Initially is sounded like a AM radio station on low and by the end of the day- I was watching TV, (without me being fully aware of it), and suddenly it started to sound like WORDS!! Yes, little robot people words ... but I am super happy.  It has been a very rough recovery- fevers, new antibiotics, pain, severe vertigo attacks lasting 2 days right before my big day!! I was so relieved I could go to the activation.

I think as much as I try to not think about it, I clearly have a disease that made me lose this hearing- Meniere's,  autoimmune disease whatever,  but i wanted to just jump back out there- business as usual.  I am thrilled to restore some hearing to my right ear, but have to also deal with an ongoing challenge simultaneously. I told the audiologist that i believe, while everyone heals and perceives things differently,  they may have downplayed the recovery period and i am not sure that is the best route. Perhaps they should the disease process (if any) and it's impact on recovery.  

I felt very frightened and like something was very wrong (maybe it was!) but they didn't mention the CRA-ZY tinnitis and everything to the extent i experienced it.  This forum actually helped me through a very frightening time- hearing stories from others with similar symptoms, which most importantly , went away!!!  I will continue to follow hopefully offering advice someday, and also to continue learning from the troops in the front lines who ACTUALLY know what it is like 1st hand!

 

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Christi, 

i ended up having to have a Labrynthectomy. They removed the vestibular system from my left ear. I ended up having to relearn how to walk. The doctor made it seem much less of a big deal than it was so I totally get that. It destroyed all the residual ( what was left of it) hearing in my left ear. I have been bilaterally implanted for over 5 years. 

After one CI surgery my tinnitus was raging. It did settle down over time. After the 2nd surgery on the other ear, the tinnitus wasn't nearly as bad. Some people say that they had not tinnitus afterwards and some say it was almost unbearable. I think it really depends on the person and their brain. Each person is different and no two surgeries are exactly the same. The goes for activations as well. 

My first activation I either heard white noise or static when people talked, or you could have picked a cartoon character. My audiologist was a dead ringer for Alvin the chipmunk. It was pretty funny. 

My 2nd activation was different as there were no cartoon characters but everybody sounded synthesized or robotic. Luckily it didn't last very long either time and things started to sound more normal.

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Christi,

Now the fun begins!  Keep us posted.

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OK- will do! I actually fell asleep so early- I think it must be exausting in a new way! I am thrilled through- I just have so much hope and new plans!!!

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At the end of the first day of activation, I was definitely ready to take the processors off. I guess Sensory overload. I had no problems falling asleep that night for sure.

i remember taking the processor off and I didn't realize actually how quiet my world was until after a full day of sound. 

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Wow Adam, sounds very similar as I had considered a labyrinthectomy except then it because bilateral and he said not to bother. He wants to knock out the vestibular system in my left ear with gentamycin. Either way, practically no usable hearing in left, but I need to wait till my implant is working. Btw- I wore it again today and I am getting a feeling of being off balance and mild nausea- Almost the feeling of being on a roller coaster (not a super big one!) Is there any relationship to this and wearing processor? I want to push myself to get used to it  but it is kind of hard to function (like walk!)  I def hear a weird form of almost illegible speech, but it is getting a bit more.  But yes, it almost feels like a big break just having silence when I want to - there is a peacefulness to it, as long as I don't need to communicate. Any help you can offer I appreciate -I live alone, so being functional  with walking, chores, driving etc is a big plus! I take meclizine but meh... Thanks Adam.

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Christi,

i did not have that issue with being off balance after surgery. I have heard that complaint from some other people. 

I just kind of forced myself to wear it with the thought "suffer early to gain later". 

I would let your Audi know about the challenges you are having. The volume might be too high. Let him or her know anything that is different. Numbness, tingling, facial twitching. 

This will help them figure things out. Because of all my inner ear challenges, I'm sure I was hard to figure out. Probably why they had me wait 6 weeks before activation.

ive had

a perilymph fistula, BPPV, a Cholesteatoma, Labrynthectomy....

the surgeon probably saw my medical history and thought, oh Lord, I get this guy.

try to have patience. It WILL get better. 

 

 

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Wow- you certainly have had a litany of issues there.  I feel your pain :(. I wonder what caused all that...? I have no idea re: me!  My hope is that it will get better- my dizziness or poor balance is quite disturbing, but they still feel it is normal due to the work done on the inner ear/nerves.  My taste has pretty much returned , no facial twitching.  I think it just takes getting used to- i have had sound sensitivity (recuitment) that has bothered me , so I just have to soldier through if  I want good results. I will just force myself until i get used to it- my audiologist gave me a gadget that allows me to turn it down in volume or switch to a different mode- so I try to keep it up to the optimum, till I need a rest.  The brain is one weird organ!!!

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Christi, you have no Idea :) 19 of the 39 surgeries were brain surgeries.

yeah you just have to work that brain like a muscle. Eventually it will realize what is going on and start recognizing sounds.

by far, the labrynthectomy was the worst surgery out of them all. Just blinking my eyes got me violently ill. 

Hang in there and keep plugging away. 

Maybe take detailed notes of what sounds really cause you trouble. When I was first activated. Electrode 12 (high pitches) almost hurt. Taking the silverware out of the dishwasher was agony. We ended up turning off that electrode for a while. Then after things settled down, we Turned it back on and gradually radioed it back up over the course of a few mappings.

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Wow Adam- that is horrifying- 39 surgeries?! I am so sorry for your suffering.  I know exactly what you mean about the high pitches- my dog toe nails on the floor sound louder than ANYTHING else.  Great idea about talking notes. My audiologist  told me even the company can remotely view my mapping and make changes if audiologist is unavailable (she can do this as well- (nice to know they can check in and see what is happening)- pretty cool. 

What is NOT cool is that while I am feeling really great re: surgical discomfort etc.,my balance is SO off daily , I had to go back to using a cane (and a wall!) I am sure -based on what you told me about your history, you know this feeling.  I had a couple of days where it was OK then back to NO balance.  And vertigo where I can't see exactly straight (so reading is a challenge). Have any suggestions? I know the vestibular retraining they do (which I have not had lol), but this is ridiculous- i don't know if it can be caused by wearing my new processor- (new stimulation) which I will do daily and stick it out. Uhhhhhhhhhg... (breathe....):wacko:

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Christi, I actually had to go to vestibular rehab (before I got CI's) for the vertigo caused by the BPPV. They gave me a bunch of habituation exercises to do to help me. It seemed to work for a while. Eventually my surgeon said I basically had 2 choices, deal with it or gets labrynthectomy. 

All that said, there might be some exercises you can do to lessen the vertigo.

i would touch base with your audiologist. Be sure to take notes about when the vertigo hits, how long it lasts, what activity were you doing.....this will help them figure things out as they are very familiar with your history. 

Please let us know how things go

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I have taken Gravol for vertigo before it helped somewhat. It's and anti nausea med over the counter up here. 

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hi Adam-i would like to try some vestibular rehab- can't hurt right?  I just saw audiologist on Friday (2 days ago!) and she had nothing to suggest- she checked with my neurotologist who just said taking whatever I usually take. So there is that! But i think time might do wonders here too :)

 

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Anytime. Always here to lend a hand if I can. 

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I know with some Medes to take for from vertigo/nausea it can suppress the vestibular system which might make you unsteady or dizzy. Check with your doctor for the specific side effects of any Medes taken. 

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Christi, I would discuss it with your doctor. It can't hurt. What hospital do you go to, where is it?

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Hi Adam,

I have discussed ad nauseum with my docs and they just don't offer much.   I do have top specialists too so I have no idea why this is so.  I keep hearing the word "patience" and sorry we can't do more.

The meds that "disconnect" you from your vestibular function is only mildly helpful to completely ineffective for me with vertigo- and the dizziness he says is related to the surgery - inflammation, trauma, (blood behind my tympanic membrane) and the disease state which existed prior to surgery.  I have had 3 specialists in 3 parts of the country- L.A., Phoenix, and Boston and there has never been very much effort in relieving this symptom (other than meclizine, ativan (nausea), compazine, scopolamine).  I believe it to be a poorly understood etiology ( in each case) and even poorer treatment selection. Had been on decadron or prednisone for a while which also didn't do much.  He discussed a labyrinthectomy with me initally until I was diagnosed with bilaterally meniere's then said- nope.  I just had a CT scan tomorrow and will see him again tomorrow, but he did say this can result temporarily or permanently after surgery (hoping for the former!!).  

On the up side- I wore my processor today and felt I could detect a bit more word recognition- so there is that!!

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I am so sorry that your recovery has been so rough.  

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I know the feeling of so much vertigo and I am very sorry you have to deal with it.

as my neurosurgeon says, medicine is more of an art than Science. So many with the same root issue can present with symptoms totally different. Praying that you find answers soon

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congratulations on your progress! That is pretty awesome even though I'm sure you don't feel like celebrating. Try to enjoy the small steps forward

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