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My beginning of Cogan 21 Okt 2020 08:33 #213

  • Katrin
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Hello Klemen,

indeed, I lost hearing on my left ear before Cogan was diagnosted - so I took no medication during that time. Then I took Metothrexat (MTX) for more than a year and luckily nothing more was damaged. After this time I got heavy side affects from MTX, so my doctor and I decided to try it without any medication as my healthy situation was stable for more than a year. In the beginning this was working good, but after a while (I don't know the exact time any more) my hearing ability on the right ear began to reduce. Then I took cortisone and the hearing ability recovered under this medication. I had several reduces in hearing (nearly once a month) for over a year. I always took cortisone to take this under control and this worked very good.
After about one year I got deaf although I took cortisone. They tried to save it with some injections of cortisone directly in the ear, but it didn't work.
At the moment I only take 1-2 mg cortison per day. This works good at the moment (keep my fingers crossed that that lasts for a long time...).

In Germany the implantations for Cochlea Implants mostly are covered by the health insurances. The clinic has to make extensive examinations to find out if you are the right candidate. As you say the most important thing is, that the auditory nerve is working good and that the cochlea is not damaged. They test this with several examinations.
After that the clinic or the patient itself has to apply the implantation at the health insurance. When you are completely deaf and the examinations say, that the implant will be working for you, normally they accept it and pay for it. In most cases they also pay for it, when you are deaf in only one ear. I don't know the detailed criteria what they check.

I hope this information helps you a little bit.

Of course it's a pity that health insurance in your country doesn't pay for it, as the implantaion and the implant are very expensive.
I hope that you can find a way to get a cochlea implant or find another way to handle with your situation.

All the best for you!
Katrin

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My beginning of Cogan 21 Okt 2020 10:28 #214

  • Klemen
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Hello Katrin,

thank you a lot for these comprehensive information's.

I hope that MTX will works fine for me, otherwise they have something else on the stock. :)
I just want to go down with cortisone, now I am on 44 mg, next week 40 mg, etc. I eat to much, depressed and some other side effects.

Yesterday, I was at my personal doctor and now I have to wait on next ORL visit and then well proceed further. I hope that with oxygen therapies I can achieve to hear again. Now its 13th therapy, nothing has changed yet but I think it is just a beginning. Even the result is not gonna be positive, I already made my mind and accept it, live must go on. :)

Thank you again and will keep post how my treatment's are progressing.

thx

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