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My beginning of Cogan

21 Okt. 2020 10:28 #214 von Klemen
Klemen antwortete auf My beginning of Cogan
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.


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21 Okt. 2020 08:33 #213 von Katrin
Katrin antwortete auf My beginning of Cogan
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!

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17 Okt. 2020 08:36 #212 von Klemen
Klemen antwortete auf My beginning of Cogan
Hello Katrin,

thank you so much on reply on my story and thank you for yours.

I couldn't imagine right now to loss hearing on the right ear too. I am happy to hear from you that even at the end you lost you hearing you are satisfied with Cochlea implant. I believe that every such an experience is painful at the beginning but at the end we always accept other alternatives. It is important that Cochlea works for you and let it stay this way forever. :)

You mentioned that you try to save your right hearing with medications. So it means that at the beginning of the Cogan, you first lost hearing on the left side and even you were on medication, hearing started to reduce also on the right side, or you did not take any of the medication at that time?
What kind of medication you are taking now?

I was at the ORL clinic this week regarding the Cochlea implants. The point is that our government for health does not cover the cost of this implant. Everything is self payable, maybe insert of the implant or surgery part not.
How is in your country? I would ask you for some information what is the procedure? How they found out that you are the right candidate? So most probably it is important that auditory nerve from the Cochlea (snail) in the inner ear is not damaged?

Thank you for your answers in advance. You do not have to hurry with it, take your time, whenever you will answer I'll be happy. :)

I wish you all the best,

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16 Okt. 2020 11:53 #211 von Katrin
Katrin antwortete auf My beginning of Cogan
Hello Klemen,

thank you for your detailed story and I really admire your positive attitude! But I think that's the right attitude to face the disease!
As the months from August to October must have been very hard for you, it's great that the doctor's found the right diagnosis in such a short time.
In a lot of cases, this takes years sometimes.
It's also great that you try some alternative therapies - I'm curious about your experiences when you share them with us!
I also tried some alternative therapies - acupuncture for excample. But unfortunatelly it didn't work.
As you and Sabine said already - reducing stress can be very effective indeed!
I'm deaf now since 3 years on both ears and I'm happy about my Cochlea implants.
My left ear and vertigo organ stopped to work already 9 years ago and I fighted with some autoimmun suppressiva and cortisone to rescue my right ear.
But in the end we lost that struggle 3 years ago.
It sounds strange - but in the end I was some kind of happy about this because the everlasting fear of getting deaf has ended now and I'm really happy that I can hear reliable now with my two Cochlea implants.
There are still some hard times when the disease rises again (vertigo or inflammable eyes in my case), but luckily this has become rare after the "main goal" of the disease (in my case my ears) was achieved.
I hope this will last for many many years...

I wish you all the best with your therapies and would be happy when you share your experiences here with us in this forum!

Take care and cheer up!

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15 Okt. 2020 09:43 - 15 Okt. 2020 09:46 #209 von Klemen
Klemen antwortete auf My beginning of Cogan
Hello Sabine,

thank you so much on reply on my story and thank you for yours.

Your story also tells that you went through a hard time. I mean none of our story on this forum is pleasant but some of us has intense symptoms like you, beside Cogan the other autoimmune were found.

I wrote at the beginning of my story that I had suffer for another symptoms this year. Everything has started with abnormal allergy, I am not sure if this was a trigger, but this year was really intense than the last years.
In month May diarrhea stared for about two weeks. I started to consume probiotics and let say when I went to the toilet it was better but not as it should be. Blood results were ok. In month August, I was sent to colonoscopy, it was removed one polyp from large intenstine the other part of it was fine. At the small intestine doctor saw a small inflammation and I think this was most probably the beginning of the autoimmune disease.

I agree with you what you have wrote regarding the stress. All this years I have been working, I was constantly under the stress, I do really exhaust my body. And because I didn't take care even when I do some sport, I haven't eat proper food or drink enough liquid, everything has jus accumulates and at the end body attacks itself.

Anyway, now it is important to look forward and live with it. I am glad that I can be a part of this forum where we can share our experiences with this or other diseases. Every story from each of us can make our life better.

I will stay in touch to share my further experiences, or if I would have any question, I would be more than happy if I could turn on you.

Thank you again and I wish you all the best.

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