Renee Iseli - Smits in Lifestyle, Social Work, Healthcare Moderator • ProCap Switzerland Nov 20, 2019 · 1 min read · 3.7K

Hyperacusis with an experimental muffling – Part 2

Today a second 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 participates in an experimental research. Read the rest of her story.

Hyperacusis with an experimental muffling – Part 2

It is an exciting period, when my ENT specialist does several experimental studies. And all this to prove the usefulness of Dr. Silverstein’s operation in America as a treatment for my Hyperacusis and to bring this treatment to the Netherlands.
The tests with temporary silicone membranes to attenuate my eardrum are successful. Striking detail: my hearing was even better with the attenuation, possibly due to improved concentration and less over-stimulation in the brain in terms of sound.

Although the studies support the usefulness of an operation for me, it is slowly becoming clearer and clearer that the hospital does not give permission for it to be performed. Nevertheless, my ENT physician is very enthusiastic and even says: “You are the perfect candidate for this simple operation, with very few risks”.

My ENT doctor thinks along and we decide to approach another doctor in a university hospital, where the financial side does not have to be a problem anyway.
It takes weeks before I get an answer. But unfortunately, this doctor is not open to this experiment. And according to my E.N.T. doctor, this makes the chance of success in the Netherlands almost impossible.
It’s a big disappointment that I have to deal with! But… my ENT specialist also strongly advises me to try it in Belgium. Not in the least because they are more open to new treatments there.
But also because treatments in Belgium are often reimbursed by the insurance company. He recommended a specific hospital. And if I need his help in the future, he is open to it.

I had taken into account beforehand that if it didn’t work out in the Netherlands, I would try it in Belgium. And possibly England or America, where it is done anyway, are also an option. But the cost of an operation, with every option that is lost, does increase. That’s why this order of processing.
It is a pity that the Netherlands is so rigid in this area, especially for many patients. But I still have hope, because there are other possibilities.
I’m just thinking: there are a lot of roads leading to this operation. And I also hope that my experimental treatment has brought the operation a little closer.

To be continued even further.