Question for People with Severe Hearing Loss and Tinnitus

[Alex Senkowski]

Did you not have T before surgery?
What regressed in your hearing? is it the conductive or the sensorineural part (or both)?

My conductive losses got better, but the sensorineural part got worse, presumably due to otosclerosis making more damage.

I'm taking heavy doses of Fluoride. Are you also on meds to try to arrest it?

Yes, I had T before the surgery, but it became more acute after the relapse several months later.
My hearing loss is mostly conductive and in the lower frequencies according to my last few audiograms.
I don't take any meds for it since there currently is no solid scientific consensus on what truly works.
I do take magnesium tablets everyday since it's a supplement.

I take from your questions that you're considering getting the surgery yourself? What's your age?

 

[GregCA]

I take from your questions that you're considering getting the surgery yourself? What's your age?

I did do surgery about 3 months ago. My T changed pre vs post op, but it's still there unfortunately.
I'm mid/early 40s.

I'm taking heavy doses of Fluoride, as there is some reasonable amount of success in arresting otosclerosis' progression, but if it doesn't seem to work after 6 months of treatment, my surgeon is willing to consider moving to bisphosphonates. You can find quite a few studies about Fluoride/bisphosphonates on pubmed.
Nothing has high rates of success with our afflictions, unfortunately, but I'll take anything over 0%, as long as the risks aren't too high.

 

[Alex Senkowski]

I did do surgery about 3 months ago. My T changed pre vs post op, but it's still there unfortunately.
I'm mid/early 40s.

I'm taking heavy doses of Fluoride, as there is some reasonable amount of success in arresting otosclerosis' progression, but if it doesn't seem to work after 6 months of treatment, my surgeon is willing to consider moving to bisphosphonates.

Well, both my HL and T are stable and I don't want to rock the boat right now with new treatments. Despite what happened, I'm still considering getting surgery done on the other ear since my operated ear is still better off than it was before. How long have you had the otosclerosis?

 

[GregCA]

How long have you had the otosclerosis?

It came very suddenly, unlike a typical otosclerosis. It was first diagnosed as Sudden Sensorineural Hearing Loss, as I felt my hearing go bad overnight: I felt it at the end of January 2016. No conductive losses were discovered then. 2 months later, a mix of conductive and SN losses were found, which took us down the otosclerosis path.

Nobody can explain how I got 40 dB of conductive losses in a matter of a few days. Everyone is baffled.

Unfortunately otosclerosis has also attacked my inner ear, so I have irrecoverable losses there (and may be getting worse - hence the Fluoride treatment). My left ear hasn't been affected yet. If I'm lucky, it won't.

T is quite bad, unfortunately.

 

[Alex Senkowski]

Nobody can explain how I got 40 dB of conductive losses in a matter of a few days. Everyone is baffled.

Unfortunately otosclerosis has also attacked my inner ear, so I have irrecoverable losses there (and may be getting worse - hence the Fluoride treatment). My left ear hasn't been affected yet. If I'm lucky, it won't.

T is quite bad, unfortunately.

I'm sorry to hear that. My otosclerosis was gradual for the first 4 years but thankfully seems to have stabilized over the last 3. The only reassurance I have is that the disease rarely results in complete deafness. That, and the hope that science figures out how to clone ear hair cells.

 

[Dominic1955]

Again looking for outcome in tinnitus with vs without hearing loss, any comments ?

 

[Fabio Moraes]

Hey guys. I had the Mumps, a virus, and as a consequence it took away 100% of my right side hearing and left an extremely loud high pitch T. It is there 24/7.

It s been 4 months now and i d say i got used to it.

Some docs told me the T would eventually go away and i could get my hearing back. Well, neither happened.

I am a teacher and it is a challenge to cope with it constantly.

I felt depressed after 3 months.

And i gotta say, work is what has kept me going.

I can t be alone, if i am alone then i start thinking about the T and feel blue again.

My advice would be:

Face it might be there forever and accept it.
Don t feel sorry for yourself.
Don t expect people will understand you, they can t see your T so they will forget about it. You won t
Think of all the other things you can do, you re not dead.

Live.

 

[April]

@Fabio Moraes
Your advice is spot on. Some days I just want to be alone and not have any interaction with people as it is so challenging to understand speech and the T gets louder with any noise at all. However, I realized that a part of my mental health in dealing with this condition is to be around people and do the best I can as I think isolation is the worst thing in dealing with T and hearing loss. I now interact with a community of artists working in clay and although I can't participate in a lot of the conversations because it is impossible to understand speech in a group setting, it still allows me to get out and feel connected to people. I have plenty of bad days that leave me wondering how I'll possibly cope with this my entire life but I learned that those thoughts are totally unproductive and try to guide myself out of that path of thinking. Now bad days are just bad days, nothing more and they will pass.