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Where to go for surgery?

Posted: Fri Aug 05, 2016 8:31 pm
by amadeusmalick
Hi! I have an acoustic neuroma measuring 2,5 X 2,7 X 2,2 cm and it was diagnosed in june 2016. I'm 30 years old and live in Switzerland. They say that the only choice for me is surgery, because my tumor is already too big for radio surgery.

My operation is normally planned in september 2016 at the Inselspital in Bern with Dr. Andreas Raabe. I was quite scared of the operation before meeting this doctor, but then after I talked with him, I now feel like I'm in good hands.

In the meantime, I saw an article in a swiss journal about people who wanted to go to Tübingen to make the operation, because it's known that they are specialised with the acoustic neuromas and that they're operating them quite frequently. The problem was that the swiss insurance didn't want to pay. (in many cases).

I know that for that kind of surgery, it should be a doctor with as many surgeries on acoustic neuroma as possible. What do you think? I know that dr. Raabe is a very good doctor, but I also know that in Switzerland there aren't enough acoustic neuromas to operate, so it's difficult for swiss doctors to even have the kind of experience (one acoustic neuroma per week) needed.

I heard recently about Dr. Sephernia. I was told that he has a lot of experience from germany and was quite good. With all due respect, I was just wondering if his age (69 years old) could be a bad fact or not for surgeries?

Does anyone have any suggestion or else about this topic. Until september, I just wanna be sure to go to the safest place possible, because without my facial nerve, I won't be able to work anymore in my field... (among other things).

Thanks to you all.


Re: Where to go for surgery?

Posted: Mon Aug 08, 2016 2:56 pm
by gfstiftung
Dear amadeusmalick,

First, we welcome you to the english forum of the IGAN and thank you for your post and question about the best option for your surgery.

Because we do not have many posts yet in the english forum (we started in april 2016), there is no experience of other affected people, you might profit.
That is why we wrote you a private message (PM), also because your surgery is already in september.

We would like to mention that it is very important to feel right about your decision by yourself and having a second opinion, if you are not sure about the "first" doctor.

In our medical board there are surgeons with lots of case numbers in acoustic neuroma brain tumours (AN): http://www.acoustic-neuroma-brain-tumou ... hp?navid=7

Please feel free to tell us your experience with finding your decision and how you feel after surgery.

We wish you all the best.

Re: Where to go for surgery?

Posted: Tue Aug 09, 2016 8:57 am
by amadeusmalick
Thank you all for your answers and your help. It looks like I cannot send private messages for now, so I write here instead.


Re: Where to go for surgery?

Posted: Tue Aug 09, 2016 3:50 pm
by Subri
Dear T,
You are asking all the right questions! I might add a couple of questions to ask during your interviews with surgeons: how will they monitor the facial nerve during surgery? What is their rate of surgical complications? Will a neurosurgeon also assist in removal of the tumor? In the USA there are usually 2 surgeons: one that is specialized in skull based surgery and a neurosurgeon for the fine removal of tumor away from the cranial nerves.
Please do keep in touch and let us know your decision, how you fare with surgery and the recovery process. In all these matters, take good care of yourself and allow plenty of time for healing!

Re: Where to go for surgery?

Posted: Fri Jul 14, 2017 4:34 pm
by Karinterwey

I'm new to the forum and from Holland
My daughter ( now 23 ) is diagnosed with a vestibular schwannoom in january 2016. it's 27,3by 21,1 cm.
Because off her age they wanted to do a genetic research first with a MRI every half year.
They discovered papil-oedema, but no NF 1 or 2 gen.
She has to decide what to do, a operation or radiation.
We heard that in Germany the cyber knife is used for radiation and we want to know where the best place is to go for a consult and if there are people on this forum who already has experience with the cyber knife.
In holland we have to choose between gamma knife radiotion or operation ans both in different hospitals . The one who does the operation advices a operation and the ones who do the radiation tell us that that's the best option. Its very diffucult to understand whats the best option and we want to do a second opinion in Germany if tha'ts possible. Now we need to know whats the best place to go to ?


Re: Where to go for surgery?

Posted: Mon Jul 17, 2017 3:55 pm
by Subri
Hello Karinterwey,
This is Suebri your forum moderator. I am in USA and was treated at a large center in Los Angeles called "The House Ear Institute" over 15 years ago. I underwent surgery for my tumor which left me deaf in my left ear.

Often, the physicians will want the patient to choose what modality to use to treat the tumor. Due to your daughter's young age, I believe she will want a treatment that has the best long term outcome and best preservation of her facial nerve.

Both types of treatment have been studied and used extensively, with radiation gaining momentum in usage of the past 15 years or so. In researching your question, I came across a website called "the European centers of Excellence". I have supplied the link here: [ ... etherlands]
I think the information on their website might be helpful.

If your daughter and you select surgery, find a center that performs this type of surgery routinely.
Write down all of your questions and I suggest the following:
1. How many patients have they treated with gamma knife or how many types of similar operations have they done?
2. What are the expected outcomes?
3. What are the expected side effects?
4. How much hearing will be lost or gained?
5. What is the expectation for keeping the facial nerve functional?
6. Does the size of the tumor allow for effective gamma knife/stereotactic radiation or is surgery preferred?

I do suggest you seek consultations at the Erasmus University Hospital in Rotterdam if at all possible. They appear to have ample experience with both modalities and have many publications.

Please let me know if this is helpful.
My best to you and your daughter.