Renee Iseli - Smits

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Hyperacusis with an experimental muffling

Hyperacusis with an experimental muffling

Today a guest contribution from Mirjam van Soest. Mirjam has had severe Hyperacusis since brain surgery a long time ago, but has not resigned herself to it. She has continued to look for a solution and is now participating in an experimental study. Read her story.

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Tense, I walk into the doctor’s surgery. We have already discussed in advance that I will not be given anaesthesia, because the anaesthesia method is expected to be too painful for my Hyperacusis. But I imagine that the pain will go to waste compared to the brain surgery that started it all.
The doctor also seems to be a bit tense, of enthusiasm that is. Because with a big smile he asks me three times if I really want this. And when I say that I have not put this process forward myself for nothing, we can start.
In my right ear a silicon membrane is placed on the eardrum. After a short shot of pain, which was not as bad as expected, I immediately feel and hear a difference. An attenuation, as if my ear is a bit closed. Also at the left ear some shooting pains, after which the treatment is already over.

That day I suddenly notice that the strong wind in my ears doesn’t bother me as much. Also the sound of running water from the tap causes less irritation. And also the television is 2 taps louder.
After a few days I notice a few things. First of all I sometimes doubt if they didn’t fall out. Soon I’ll imagine a difference without the membrance still in place. After all, the difference is not that big. I estimate a 5-10% improvement.
I might have hoped for a bit more improvement. Sometimes it makes me a bit insecure. But when I swallow or yawn, I often hear a little ‘pop’ in my eardrums, a bit as if you have water in your ears. So I think it’s still there. Secondly, I notice that my brain hasn’t overcompensated yet. Something that worried the doctors beforehand. A big plus!

I also went to a cabaret evening. An activity in which I normally don’t take part very easily, because of the many laughing salvos and music, but which are so much fun! I wanted to try this now. I brought my headphones with ‘noise canceler’ and I still needed them.
The evening was still quite tiring, although the headache was not too bad for me. The muffling I have now is not good enough for the busier activities, unfortunately! But to be honest, I didn’t really expect that either (maybe I did hope).
A big ‘eye-opener’, is where I thought beforehand that the damping might give me an unpleasant, scary and oppressive feeling. After all, no one does really want to hear less. Yet it seems to me it just gives a pleasant and safe feeling would not even mind more damping! Sounds are suddenly less threatening. In fact, even though I know that these membranes are not a permanent solution, I would be reluctant to have them removed again! Maybe holding them down a bit longer is still an option.

After 2 weeks I’m back with the doctor and I conclude that I am definitely open for the operation from America, where they want to put a piece of my skin in both ears as a cushioning in the inner ear, on the Stirrup! The doctor is also very satisfied! He does say that it will all take a bit longer because of insurance, doctor’s consultation, etc. In the meantime he wants to try something else for more cushioning. It feels promising! The biggest encouragement is that there is progress in the development for treatment of Hyperacusis! Finally!


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