Deaf with New Cochlear Implant

I hope to get a reply to my worsening symptoms that is affecting my whole being. I was born deaf, wore an aid, spoke and have lvas. All my life I could hear my heartbeat but didn't know why. 2010 I hit my head hard at work and non-fluctuating whoosh sounds started along w my heartbeat and migraines. ENT'S & drs say it's part of deafness. I did have CT/MRI but no thorough analysis. A neuroto. told me to get a CI after 1 appt. w/o further tests. CI now has made me totally deaf w/ roaring that is totally debilitating. I cannot function like I used to. I can't go back to wearing an aid. I have grating roaring sound vibrating that escalates w/ physical activities in place of my prev. soothing heartbeat sound. Increased pressure and hypercusis. Is this pulsating tinnitus?

 

Isn`t CI supposed to make you able to hear sounds (real ones) ?

 

That's a misconception that people thought which many ENT drs. do not fully explain to patients as they and CI companies make ALOT of money in this. I went from playing piano, hearing all environmental sounds and people except high freq. sounds w/ an aid to total silence w a "bloop" sound w/ a CI. which they say is voices. It totally freaked me out. They said get used to the bloops, which has no real tone til the next "mapping" in a few months! They will cont'd to do this for a year w/o any other support therapy. My brain is already "wired" to recognize most sounds so this is a true misconception that you hear sounds like an aid or whatnot. Sounds are robotic and my tinnitus has worsened w it to the pt. I can't even hear those dan bloops. Neuroto. Said "nothing to do w tinnitus -sorry- it's a phantom perception" and won't check my other symptoms ive mentioned (heartbeat, worsening tinn. etc) I strongly advise others to really consider the aid over cochlear implant if you have any residual hearing like I did. I really regret trusting the neuroto. words From one mtg. But like so many of us, we trust Drs. to really think they're helping us at all times - the good ones show compassion, by giving you thorough tests first, research, and last, trust your gut before doing anything drastic.

 

I've done enough research to say that any surgery in the ear is bogus in my opinion ...unless its 99 percent it'll work ...our brains can rewire all this B.S ringtones or like my uncle ,dad ,mom,step uncle, brother etc..all have some ringing or whooshing going on they have said ... I'm currently taking lithium ,nurontin and ability ..., for stability at the moment

 

Hi karen - Thx you for listening. It's been quite distressing for me which is why I'm here on the forum to check for -anything- to try help. My neuroto. Ive learned to late basically saw me as number to his line of CI candidates which now has placed me into a more depressed state. I saw him a 2nd time after the CI surgery 7 wks later and basically he shrugged. Told me to be patient w the CI. disregarding all my other symptoms I told him at my 1st appt. Now the tinnitus is worse. I noticed if I do any physical moving, the roaring &pressure escalates to where I can't do anything more. I can't escape from it - nonstop roaring. I currently need to take 3 alaprozam (from family dr) and 3 mg melatonin to at least relax or focus. One dr recently said I also have Tulio syndrome, nystagmus from sounds along w/ this debilitating tinnitus. How did yours go down since then?

 

hi kasart , you'll heal up from the surgery ...give it time and you will get better

 

I agree somewhat (like in my case w/ the CI). However, there are other complex issues that cause further distress to the ear, balance etc. You have conductive hearing loss so there are some newer methods to could look into like the newer non-invasive masking devices which you could add w/ the meds. you feel that work for you - may help? I believe a good clinic to just look at this info. is at the Oregon ear clinic.

 

Yes, myself & family thought as well but discovered the Dr. did not do his job of doing further tests beforehand. Nystgamus triggered from sounds such as my voice, chewing is a separate issue from hearingloss/tinnitus. The other issues - pulsating tinnitus overcoming any sound that goes into my ear affecting balance. This is why I came to this site to find help.

 

good call on all the therapy your getting , hang in there your T will calm down let your brain rewire and make the connection ...it takes a minute to heal

 

I was wondering what you meant by "good call on all the therapy your getting". The tinnitus has not fluctuated or calmed down for 4 yrs and was worsened by a CI implant. Apparently there were tests that could have been done before this drastic surgery that I was not aware of for pulsatile tinnitus. Currently my family dr. who is not specialized is the only compassionate one, trying to figure out a way to prevent me from spiraling downwards as the Neuro-oto is too busy with his factory-line of CI candidates (small children). Speaking of "rewiring" brain with CI - this is also not happening for the many students I teach who got them for their -hearing- by uneducated parents. NO therapy involved after - comes out of your taxes. I did mine for -tinnitus- reasons as my hearing was good. A very bad move and now totally deaf w/ neurological complications.

 

A friend of mine has a CI (in his left ear) and after the operation he had extreme loud T-noises for several weeks. Once they did the CI fitting the T-noises went away. Now he only gets occasional brief T, which stays for a few minutes up to an hour at most. I wonder, can't they readjust the electrical stimulation of your CI? I think, if your T is caused by neurons the CI could address those neurons and make them cease going apesh*t.

 

Cochlear Implants gives everyone tinnitus right after surgery. It's discovered the FDA and even the cochlear implant companies do NOT have any "prerequisites" requirements prior this 100k surgery except audiogram / speech discrimination results, and have placed all the control to the doctors, which is WRONG. Drs are consistently trying to make the "candidacy" requirements more lax as they help the corporations profit in getting MORE patients - in turn the hospitals profit as well (while Drs get promotions, trips, conferences etc paid for).
There are NO true data of CI's benefits, except what surgeons publish (from their own patients). There are no valid statistics from cochlear companies - they will NOT share, but throw in a percentage. Find out for yourself. There are people on YouTube who discuss this disturbing lack of information. Young implanted children cannot express themselves, but their parents make the assumptions. (Startled head response to noise, is NOT true hearing). There are many patients who have congenital, complicated ear issues who most often do NOT benefit, perhaps certain "noises" but no true linguistic/music capabilities. There are those who have NO congenital complications, who do benefit for HEARING assistance (eg. Rush Limbaugh). It's not developed for tinnitus, although a couple of surgeons (researchers who profit) apply this claim in publications that it suppresses tinnitus in their few patients. Many have worsen AFTER CI such as myself - from being fully functional to mainly bed-ridden (2 yrs now). I played music, was verbal, used hearing-aid etc. My only complaint was tinnitus and migraines triggered from a head-injury, which the Dr. said a CI was my only option (without any work-up that I was aware of at the time). I was so desperate to rid the pain, and now it's 10x worse and my life is gone. The surgeon's response after 3 whole appts? See a psychiatrist (again with no true work-up). The public are misinformed & there are NO data of how many suffer with tinnitus from CIs. There are no method by electrical stimulation to assist with tinnitus from a CI or else I would not be on this forum. If there are additional ear issues that were not addressed, a CI will only exacerbate it. I advise everyone to seek other methods for tinnitus, such as masking device- NOT an invasive CI. For those who are Deaf, make sure you have a complete, compassionate team and doctors in the field to make sure you WILL benefit and have your best interest at heart, that I never received.

 

@kasart , I am so deeply sorry you are in such a hell now. I feel you. My T is extreme too.
I did consider a CI, well anything. Anything that could stop T somehow, even a lobotomy.

I think I'd kill this Dr. telling you to see a psychiatrist.

Thank you so much for this elaborate explanation. ~hug

Maybe this could help you? http://www.ata.org/michaels-story
I so hope Dr. Fan-Gang Zeng can help you.


~hug

 

People here have said it and I'm reinforcing it. CIs are a business and are extremely costly. The FDA has only allowed three companies to sell them the U.S. They're pushed like products in any business whether they're good for you or not. CIs only allow what is called the "processing of sounds." It's not the same as hearing because it bypasses the usual hearing routes by sending sounds through the cochlea to the brain. The claim is after a CI, you have to allow your brain to create new pathways to allow the processing of sounds and it could take years to do it. They work for some but I don't believe that even with more time, it will be any more than a masking device of tinnitus for me.

Be careful of the websites that have only positive posts from CIs. If it's a CI company-owned website, comments are monitored (that's fine). But anything that remotely could dissuade pursuing an implant can be removed. My career was in IT and I watched what I'd consider inconsequential comments deleted (mine - which just lent support to a woman who was afraid of having surgery and hers were deleted with prior notification by the mods). A CI company owned the website and could do as they wished. I posted this on "alldeaf" and was literally ... what ... writtenly (verbally) attacked by one user in particular. that he/she would report me to the implant company (too late, I already told my CI rep. what I thought of that website and clearly saw what was going on) and left alldeaf permanently after deleting all my posts.

Guys, you don't know me from a hole in the wall. Trust isn't created overnight. I'm not a doctor but have had a hearing loss since birth. I'm still helping people get (or not) hearing aids. I don't charge for this and never will.

 

I cannot tell all of you how much I appreciate the reality and truths of the statements here. kasart, your posting has taken me aback. I'm really sorry about what happened to you. You're a textbook case of the inaccurate reporting of data and you know that already. You were desperate to rid yourself of pain and I finally reached the end of the predicted road I traveled - hear/process sounds despite my fear or be more isolated than I am now. I knew about the possibility of tinnitus and I had it. What I didn't know was it went from really bad to exponentially bad. Writing that tinnitus is a potential side-effect isn't a strong enough statement when researching CIs. Writing tinnitus is a potential side-effect and in some patients debilitates them is more accurate (but that's bad marketing ... and there's no data to back it up as you clearly said).

Even the psychological exam is a joke. I'm a tough and persistent older woman. I questioned the validity of a few things: 1) Is the exam standardized? If so, we're in trouble but the CI companies aren't. 2) I even question the validity of the complete audiogram. I was told my CI processing had improved my speech recognition. But if I got a sound from a word correct, it counted as part of the score. If I understood 75% of the word, it would make more sense because it's less of a guessing game. It's just nuts. I know I went to a good doctor and a good hospital (Vanderbilt in Nashville - five hours+ from where I live). So, having a good support team made for a tiring round-trip drive and I'm not sure how good they were and not being close to local made things worse.

It's actually a relief to read all this on a tinnitus forum of all places. I've tried to reach out to people to let them know the CI data is skewed and inaccurate (nothing new but it's amazing how many people want to live in denial). So, again, thanks for the relief you provided me and again, I feel so bad for you.

 

Thank you Brianna for your kind words. I do need support from others, such as yourself who -understand- and/or went through the same pain I'm going through...been 5 yrs now. You are VERY accurate in your info. and I appreciate your bravery to inform the public as well. Unfortunately, I have learned too late, AFTER the fact as, because the true data is NOT there - only the "positive" ones are published and then told I had "no other option". Even the surgeon refused to provide any answers to what the success rate was from his current/past patients (stating against "Hippa" law). I did not ask for patient's names - reasonable request? They won't provide it - Why? (His websites were professionally elaborate). They hide all those who had complications - How many are there?!

Ambiguous responses from otoneuros. & ENT Drs. validates your info. in having them remove your comments (what happened with "Free Speech")? This also confirms how much control these conglomerate pharmaceutical and cochlear implant companies have. So much money invested to create misleading advertising and info. to the public, while eliminating other people's posts if they're not "positive" to their liking- is very questionable of the motive. "Hearing" people do not realize the sound-input from CI processors are NOT alike true sounds. Hearing-aids from my experience, had more clarity to real-life sounds, than the electronic "robotic" CI output. However - ALL sound was taken from me after a 2 hr surgery *poof* gone. Rewarded with 24 hr vibrating roaring tinnitus with nothing else, is TRUE HELL. Cannot use any masking device, white noise -nothing-, plus have additional neurological damage, and was told to see a Psychiatrist(?!) The only positive thing I can provide for now, along with yourself... is to be brave, to educate the public and NOT be intimidated by any CI co. I am sure there are MANY others sufferers out there alike us. The public deserve to know the truth.

 

Oh, kasart, it's a mess out there. I was born in 1954 (hate typing this stuff on the internet - year, age, personal info - because I worked in the computer field and what we say can be hacked and used). The doctors back then did not have any idea that a baby could be born with a hearing loss. They attributed what I displayed as something else. I wore HAs since @1963 and it was my father who realized I had a hearing loss, not the doctors. It was my father who just went to Sears and brought home a HA. Dad correctly diagnosed the problem. I kind of understood it and couldn't be mad with the docs. The knew what they knew. My father was able to look beyond it all.

I spent many years dealing with good doctors (ENTs) and bad a few doctors. I learned that most HA dealers are like used car salesmen. I remember seeing the Miracle Ear commercial that was an obvious lie (it blocked out background sound and I knew at that time it was impossible) and the FCC actually made them remove it from tv. I was cynical early in life. I went with my mom, who was taking care of an elderly lady who needed a HA, to Miracle Ear (I was probably in my 30s by then). The salesguy walked out talking baloney. I was angry and mom, who was a little over 2" shorter than I, grabbed me by my arm . I don't remember what was going on in my head other than being angry. I started attempting to help people avoid being taken advantage of well before that. I continued after but people see what they want to see.

Free Speech: When a company owns a website, they control the contents of what is put on it. The mods here monitor what we say to ensure we follow their procedures for posting. If we go against it, they have every right to remove it - we don't own what we say and it doesn't fall under the right of free speech. If you want that, pony up and we'll create our own website with procedures and guidelines to users who want to use it. But, man, what a hassle.

Yup, because of the tight controls by the CI companies (authorized to do business by the FDA) truth is buried. I knew enough before surgery - years before but more when I finally was going under the chopping block again, that the results were unpredictable. I also knew ... hmmm... from someone who wrote research results that there were things he/she couldn't write. Then I knew all research results could be skewed for anything. It's not the happiest place to be. Ignorance is bliss.

Yes again, I called and still do, what I hear as sounding like ducks quacking (others call it robotic and R2D2). We went for a long walk yesterday and I asked, "What's that sound - geese?" Honestly, it was funny. She said I was hearing cows. When I knew that and associated that sound with a cow, THEN I understood it was a cow when I heard it again soon after. That's how people relearn sounds.

How many times will I begin a paragraph with "yes?" But I'll do it again .

Yes, I've spent years educating people on various things I know and they don't - age and being literate do that to you (or can). I fought with success to get domestic partnership benefits at some companies (the sequence is totally out of order but so is my brain right now). Mom had my sister and I at the march against the war in Vietnam. I was 13 (I think). My stepmother was teargassed in Dupont Circle (D.C.). It was the life I led. We do the best we can and look - we have this great website that's allowing us, so far, to maybe bore people with what we're saying. People here have been darn receptive and from other countries. It's so cool! It's all we can do is keep on trucking and having conversations like this - online. I don't know that we'll make a dent in the fact that there's little to no truth in advertising but people should be somewhat shakin' in their boots.

Moving on ... I had to see a therapist (oh boy, more info about me) because the hearing has driven me a bit bonkers. The tinnitus adds to it. I know what you're going through is real and heaven forbid I negate what you're saying. Someone may have suggested punching the guy out. The alternative is to do what we're all doing here - getting the word out.

I'm sorry to do this but I have to leave the computer for the evening. I go in peace. I go with hugs to you. I'll be back and we'll pick this up. Nice making your acquaintance. Lets see if we can make a difference.

 

kenji: I disagree with you, despite the fact that we've been messed up from surgery.* (*My tinnitus, though, was likely the result of the disease migrating out of my middle ear to the inner + unneeded surgeries.) I remember a work friend from many years ago. She avoided ear surgery until her early 20s and it worked for her. She was able to stop wearing hearing aids and I was jealous of her. I've known others who had surgery and limited it and they've been fine, too.
When you have insurance companies willing to sustain the medical industry and pharmaceuticals who are as well, the system becomes very corrupt and surgeries are done whether the consumers need it or not. Get them under control, and I suspect much of this will go away. But that's never going to happen. Heck, introduce this little word called "ethics" and that would probably bring down everything. In retrospect, that's all really the core of what kasart and I discussed.

 

(Aside from my issues in this post). My mother, grandmother, her sister etc. ALL had otosclerosis. Oftentimes, develops after having children/near menopause (or hereditary factor). My Otoneuros./ENTs never evaluated me for it, as I was considered NOT a typical "hearing" patient to have this remote possibility (even though it's hereditary).
FYI: My relative's symptoms (usually occurred around late 40s+) beginning with progressive conductive hearing-loss w/ some dizziness (had to wear aids). They had surgery: Stapedectomies and regained their hearing. Otosclerosis can affect other ossicles. Mother hit her head 2 x's over 10 yrs - dislocating it. Surgeries again...regained her hearing 100%. This is very common, & often a missed diagnosis, so ask your ENT. No herbal remedy will assist, as it's a "stuck" ossicle issue - calcium/bone-buildup. It can cause tinnitus in 40-70% of patients.
Informative: http://american-hearing(dot)org/disorders/otosclerosis/

Brianna - Did you have Cochlear Implant(s), just because of otosclerosis?!!
(I never had an analysis: HR images of my inner-ear bones (CT or MRI) in my lifetime. Strange isn't it, considering a CI was my only option for tinnitus & migraines).

 

No, ma'am. I believe between the years of bi-later otoxxx + too many surgeries (including stapedectomies - but both of those happened after my two other bones had been replaced and didn't hold - no surgery of the middle ear worked). I'm not listing the others - all they did was complicate the CI surgery. My otosclerosis was diagnosed earlier in life. Ironically, it took my childhood ENT from Virginia until I was in college to tell me I had the congenital defect since birth. It took my remembering to ask my mom about an early childhood memory of attending school pre- going to school to understand and confirm what my ENT said - I was born with a loss that went unrecognized.

This boils down to my father diagnosing my hearing loss, not the ENTs. I diagnosed the tinnitus (the first part pre CI) as being a result from the bi-lateral otoxxxx what I suspected w/out doing research because by that point, it didn't matter and my own conclusion made sense to me. The CI tinnitus increase was pretty obviously linked to surgery AFTER the implant because it happened quickly and never went away.

I still think it seems nuts, which is beyond strange. Your option was ridiculous - a CI WITHOUT tests! This is anger from me and probably why my mom had to grab my arm when we went to Miracle Ear. I've seen doctors misdiagnose before. Some act like they're omnipotent and we're ignorant to stupid patients and consumers. ... I know stress increases tinnitus and apparently anger does, too. Oy.

NOTE to anyone else besides Kenji reading this thread. IF YOU HAVE TINNITUS and/or migraines (which you typically grow out of - I did, kasart apparently didn't) DO NOT consider CI surgery. It made my pre-existing tinnitus exponentially worse when I didn't think it could and look what it did to kasart. Doctor or no doctor, we have to make an attempt to be smarter than they are. Last proof of this and this doesn't side-track this thread. I developed major crescendo headaches in my mid 30s. They slowly came on and built up to an incredibly painful peak. My partner saw my physical changes when they started coming on. I looked at changes in my environment. I went to a neurologist who dismissed my symptoms and I wanted to smack him. I quickly noticed I was drinking a crazy amount of soda with aspartame. Once I eliminated the aspartame, the worst headaches of my life disappeared. I had to be smarter than the dismissive neurologist and was.

I may seem silly, but I'm not crazy and the CI doctor realized that. One CI implant is more than enough.
I absolutely would've refused a second if he didn't retract suggesting it. There were too many unsaid things about the potential results (a black hole to me) and I had major concerns about it since I began following the invention of the surgery on top of my own history.

Hmmm... I heard a quack quack quack quack. I think my partner's up and on her computer. Time to say good morning.

 

If you have not good acoustic memory ci does not work.
Many times electrode does not implanted correctly so needed 2nd surgery for better placement.
I have seen people with ci that they understand speech.

 

You know I'm beginning to think that going to doctors is the worst thing that we do for ourself

 

I had very good acoustic memory. And because of it, the CI was placed in the "good ear" due to that rationale. It's totally destroyed it, so I have NO hearing ability now. The implant was put in correctly but the invasive surgery caused further problems. The critical issue, was the Ear Institute did not bother doing a work-up of my original debilitating symptoms which I went in for - I had NO plans for a CI implant. However, I was told a CI was my only option for tinnitus/migraines and it was the worse mistake ever done. I was not aware of all the tests I should and could have had done to see what was truly wrong. I am now in further agony from this device that complicated my symptoms with permanent deafness along with roaring 24 hr T. I, now hear NO PEACE to focus or function.
Again - a CI is best for people who have NO hearing or/ benefit from hearing-aids and do not have other inner-ear sinister issues. I was not a candidate to begin with, but I was unaware at the time. Prior to it, I understood speech well, was in music and very active until I woke up from that surgery. Now I hear nothing and have further additional neurological issues. The sounds are robotic, bleeps that caused head spasms & more migraines. No clarity of tone, or pitches that I heard clearly before with hearing aids. People are very misinformed about cochlear implants. Of course -some- people understand speech - those are the ones who had no other inner-ear congenital issues and probably had speech training therapy. It is NOT for Tinnitus, hyperacusis or migraines.

 

It's a good thing I have fellow-like minded folks here. I think I've disagreed with kasart and NiNyu once in numerous postings. The odds are good I'm in complete concurrence with what they say. Saves me the energy of posting a response .

kasart is deaf. I am without sound (deaf) when my implant is off with roaring T. I also know it could take years to get used to this idea of processing sounds vs hearing - they're different and I may never adapt but for now, it serves to allow some understanding in robot or duck speak and mostly to somewhat dampen the severity of the T.

*** (in total agreement with kasart): My implant cannot be re-implanted or the electrodes moved due it's just too long to type why. I did ask the ENT who did the surgery these questions a while back. I considered having the implant removed - THAT, he could do. It was the shape and length of the electrodes that lead me to choose one company over the two others allowed in the US. My choice was as correct as it could be.