Middle Fossa - Canada/Toronto

[BradH]

Hi, I am new here and looking to connect with Canadians who have had Middle Fossa surgery in Canada.  I had a phone consultation with Dr. Friedman at UCSD yesterday who recommended the Middle Fossa approach but I can't seem to find any information on surgeons that use this approach in Canada or any posts from patients that have had this surgery in Canada.

Of course, I am still waiting to see a Canadian surgeon to understand their assessment of my situation and my first appointment won't be until Feb 12th.  Dr. Friedman's recommendation of Middle Fossa surgery was based on my age (51), tumor location (lower balance area), size (11mmx7mmx6mm) and the fact that I still have only mild symptoms (some hearing loss, fullness in ear & mild tinnitus).  His focus was on maintaining the hearing that I have today and discouraged a watch & wait approach that would more than likely degrade my hearing to zero eventually even without tumour growth. 

I had to chuckle about a previous post that mentioned whether the US approach to aggressively treat your AN with surgery is a function of economics or good practice.  I will be very interested to hear the approach recommended in Canada for sure!  My concern is that Middle Fossa will also be the recommendation but there isn't alot of experience with it in Canada.

Thank you in advance for your help!

[Greece Lover]

I can't help with the Canada part, but your circumstances are quite similar to what mine were at diagnosis. There are fewer places familiar with Mid fossa because there are fewer types of tumors and reasons to do a craniotomy that way.  But, it does give you the best chance at saving hearing.  I hope you find someone in Canada with a lot of experience.
Good luck!

[BradH]

Greece Lover, thank you for your note.  Did you have any hearing loss prior to surgery?  Did you get any back or did the surgery just stop it from getting worse?

[Greece Lover]

I had very mild hearing loss before the surgery. But not enough that I ever even noticed it. Only an official hearing test/audiogram showed it.  My only presenting symptom was single sided tinnitus. 
My understanding is that once the hearing goes, it can't come back.  But my hearing was unchanged before and after surgery, which is amazing. I got very fortunate. My doc (which is something of an expert with Mid fossa) he told me that there was a 65% chance he could save my hearing.  But the other 35% is that I"d wake up with it completely gone after surgery.  So I assumed a lot of risk up front for the best possible outcome and it worked out for me.
They actually put tiny monitor nodes on your hearing nerve during surgery so they can watch in real time if there is any disruption to that electrical signal.  Pretty wild!

Good luck.

[BradH]

So happy it worked out for you.  Did the Tinnitus go away?

[Greece Lover]

No, sadly, tinnitus pretty much never gets better.  Mine got slightly worse after surgery.  I'm lucky that mine is not terrible. I notice it, I sleep with white noise at night, but it's not debilitating. 

[tonyc]

The Tinnitus won't go away since the nerve was damaged permanently. For me, sometimes it's weak, and sometimes it's strong. But it won't bother me.

So happy it worked out for you.  Did the Tinnitus go away?