SSHL & TINNITUS

[MikeP505]

Hello everyone.

I am a male, now aged 53 in decent physical shape. However, 4 years back I had to have emergency surgery on my left kidney (the only one I have). On the second day from recovery, I awoke to almost total deafness. I thought for sure my ears were just full of wax and ran out and purchased a water bulb and wax softener.

Returned home and did the drops, a few hours later I did a warm water flush in each ear. Barely any wax or dirt and still deaf. Totally scared me half to death. So naturally I went to my GP and was referred to an Audiologist as well as an ENT ( Ear Nose Throat ) specialist.

Had a dozen different tests as well as a full MRI on the brain.

Good news...... I have a brain.....

Bad news, no answers for my sudden hearing loss. To top it off, I suffer the worst Tinnitus you can imagine. So dealing with trying to cope with my hearing loss, as well as the screaming in my head 24/7/365 is almost enough to drive a sane man over the edge. I had Tinnitus before the hearing loss but was not quite as bad.

Also having the ability to hear helped mask the Tinnitus at the time. Now I have no way to mask it and it never shuts off.

Been on various drugs for anxiety etc but totally hate any medications and use them very rarely.

I am currently trying to qualify for a Cochlear Implant. First step in the process was positive and now I meet the surgeon this month for a few tests to see if he feels I can go thru this operation. I am quite confident I will qualify just fine however the waiting list once you qualify is massive. May take up to 2 years before I get the call for surgery.

My local hospital that does this surgery gets funding for 120 surgery's per year and there are 200 people in line for the implant. So this means dealing with total hearing loss for up to another 2 years and the non stop screaming in my head.

I am just trying to keep it together long enough to get this surgery. I have lost my job, am now living with a relative in very cramped conditions and collecting a small disability monthly. I am totally stuck trying to move from here and know the strain I am causing family and friends.

Even gone as far as to research living out of my minivan and the best ways to do this while still maintaining oral hygiene and sanity. I have applied for gear to income housing but that list can be over 20 years long.

Never in a million years would I have ever dreamed I would end up like this. Worked all my life and always managed well. Now I barely scrape by and am pretty much shunned by family. Fingers crossed I can maintain my sanity long enough to have the implant done.

I know once I have some hearing back, many other areas of my life will improve.

Any one with some input here would be most greatly appreciated.

 

[GregCA]

Sorry for what happened to you. Quite an ordeal. Do you hear anything at all at the moment? What do your audiograms look like?

 

[MikeP505]

I can hear only very loud bangs and/or alarms in my right ear. So this is quite spooky. When I do hear something, I jump up to investigate. I try to remain positive knowing life could be worse and is for many others. No one in my family understands the full impact this has on me and I try not to press it. Trying to sleep normal hours is impossible. So being up in the middle of the night can have negative effects on the one I am living with. I realize I just need time to get into my own living situation as well as the implant surgery. It is very hard waiting and every day seems like a year now. So yes it's extremely hard but I keep reminding myself at least I can still drive, cook, bathe, walk, etc etc. I always had a positive outlook in life and continue to try to focus on that. I eat less from stress, feel tired a lot from stress but refuse to medicate. Tried a few medications and really hated the feeling. I don't visit people as often due to the fact they all must write things down to communicate with me. I do other things instead such as a day on the beach reading a book or magazine, have repainted this apartment for my mother TWICE lol, joined the local YMCA to be able to use the swimming pool and exercise equipment. Pretty much anything that I can do by myself that has little interaction with others. This is exactly opposite of who I always was. Friends and family say I have changed and sure, you betchyea I have. Was once the pulse of the party and now a scarce memory.

 

[billie48]

Welcome to the forum and so sorry to hear about your struggle with T which can't be masked. I don't know how it is to deal with this unmaskable T 7/24. I have ultra high pitch dog whistle T and severe H plus PTSD. In my struggle to find a guiding light out of my dark tunnel, I came across the story of a young pretty Zoe Cartwright. When my T was new and I was struggling badly, I was in another forum for support. Zoe Cartwright, a young lady who turned completely deaf since young 15 came to our forum to introduce a short tinnitus film she directed. She has loud and unmaskable T because of deafness since 15. She displays unusual wisdom for a girl that young. She said didn't want to spend the rest of her young life in misery. She chooses to accept her T, the reality that T will be with her for life. That is amazing positive attitude for a young lady that she recognizes early the reality of her T and she is willing to accommodate and compromise. So she moves on with life to pursue her goals. She even made it to university and made a tinnitus film for her experience with unmaskable T. She titles the film 7.24.52.10 which means her T is unmaskable 7/24, 52 weeks a year, and for 10 years at the time of the film. You would think her life must be miserable. Not so. In her own words, she replied to those who asked her about her film and her life:

"Dear Dj, Laurence, Chris and Eddie,

Cheers for your lovely comments guys, it really makes me smile
I'm intrigued about Eddie's message regarding "looking at it in the wrong perspective" - the film was not designed to bring out the violin strings or moan about tinnitus. It was simply about showing a different perspective walking around with a noise that can be dominating - which therefore feels surreal. I love my life, and I can honestly say I am happy - Tinnitus is just a slice of my life.

Thanks again.

Zoe."

If you haven't watched her film, here is Zoe and her world of unmaskable T:



I wrote about her also in my success story under the section on 'my guiding lights'.
https://www.tinnitustalk.com/threads/from-darkness-to-light-how-i-recovered-from-tinnitus-hyperacusis.3148/

I also wrote in more detail about her and her film on page 14 and page 15 of the Positivity Thread in the main support forum. Check them out.

Each person's struggle is unique and personal. I hope you will find some motivation in her story to help you soldier on with your own journey with T. Wish you well. Take good care and God bless.

 

[MikeP505]

I enjoyed this story about Zoe. Not to make light of her situation at all however, being 15, young, pretty and most likely having decent parents to back her up while she went thru University and beyond to her life now, most of us do not have this option. At 53, people have less use for you especially where gainful employment goes. My ray of hope lies in getting a Cochlear Implant so I can at least hear some speech again. Just hoping to God I won't be living out of my van or on a park bench before this may occur.

 

[Lorac]

Hello MikeP505,
Wow! You are really in a tough spot! I have profound deafness in one ear and constant tinnitus. Reading your post makes me realize that things could be so much tougher.
I sure hope you receive a cochlear implant soon and I hope it improves your life. You certainly deserve a good break. I will be thinking of you. please keep us posted.

 

[MikeP505]

Hi Lorac.

Appreciate the kind words. Always try to remember, Tinnitus and deafness are hard things to cope with but others out there have it much much tougher than even I do. Being totally bottomed out, there can only be one way for me to go and that's upwards and better. I find out on Sept. 14th 2016 if I will for sure qualify for the Cochlear Implant. Just have to try to cope for the length of time it takes to have the surgery. I am positive once I can hear a little, I can get back on my feet and working again at least. Will keep you posted.

 

[Foncky]

Do you know if the kidney surgery was the cause of your deafness ? Were you given some kind of ototoxic drugs ?

It won't help you now to answer that, but it could help people who will face emergency surgery in the future. They might ask the doctors to avoid certain drugs.

 

[XDR]

Sorry to hear this Mike, I have SSHL but nowhere near as bad as yours.

I'm wondering if you have "ear fullness" feeling in the affected ear by any chance?

 

[Jkph75]

I will be praying for you. If I had $ I would buy you an implant now. I was born deaf in one ear. Now my other ear has problems. Still it doesn't compare to what you are going through. Hope you get the implant soon.

 

[Robb09]

Hello, I noticed you live in Ontario which is where I live and I'm also on the waiting list for CI. I went to London for the appointments. I waited since March this year. I'm still having hard time deciding to go for it, I don't see many good review on this forum about having CI for reducing tinnitus but then those were 3 posters i can find who did CI here. I'm profound deaf in both ears, but my left ear has a little left to use hearing aids all my life. I could hear speech and music. I like to play guitar and piano.

I like music alot and I worried it won't ever be the same... I have been having sudden hearing loss 4 times so far in the last 5 months. Deafness lasts generally 2 weeks and the aid don't help and the T becomes so bad. The hearing have always returned later after that 2 weeks, distorted at first then a few days later I could hear better and the T is still awful. Had T for almost 2 years. I find that music will make me lose my hearing over night. It's hard not listening to music because it helps me with T.

I guess I'll go with CI if i keep losing my hearing like this and go 100% deaf permamently before the CI date comes. But I've gone a month and 23 days without losing hearing which is my record now for not losing it so soon. But having no music to listen too sucks, to keep myself from losing it again.

 

[Kazue]

Damn, I'm over here crying over minor T. You guys definitely have it worse. All I can say is to keep your head up.

 

[Dominic1955]

@Robb09 , I am having a similar problem my right ear is ok but I developed SSHL in my left ear and I have fluctuating hearing loss , usually lasting 1 or 2 weeks then it comes back to a reasonable level where my hearing aid helps ?
Weird
I was thinking about a CI too
I hope @MikeP505 will get it soon!
Dom