Retrosigmoid due to Trigeminal Neuralgia

[sharonov]

My AN was diagnosed in 2004.  It hasn't grown--maybe a tiny bit--and is 1.6 x 1.4 x 1.1.  I am 74 and have felt perfectly comfortable making friends with it and letting it live in my head.  I figured we'd die together.

Then came my first hideous electrical jolt of pain.  Not knowing what it was, I phoned my AN surgeon, who diagnosed me with Trigeminal Neuralgia and put me on carbamazapine.  It made the pain go away.  Problem solved.

In 2010 I had a flareup of the TN and looked into possible options for removing the AN, just in case that's what was causing the TN.  I joined this website and got lots of good information and help.  And then--one day the pain went away; or I should say it was easily controllable with the carbamazapine.  All was find until 2012 when it roared back and I went on this site again.  I got the names of a few physicians and learned one thing for sure--if I wanted to stop the pain from TN, the only surgical option feasible was the retro-sigmoid approach.  I asked for and received the names of several doctors that specialized in that type of surgery, and even one--Shahinian--that was wildly controversial.  Then the pain went away again!

Now the pain not only has come back but it's almost unbearable and has been with me since the middle of October.  Doesn't seem long?  Try having a live wire stuck directly on a naked tooth nerve and you'll know just how long it can be.  Marathon Man times 20!

So, I'm looking again.  I live in Chicago, have been going to Northwestern, and have been told that Dr. Chandler is their AN specialist.  I know that he prefers gamma knife (though he says he does it all) but because of his gamma knife preference, I'm leery.  I want someone who SPECIALIZES in retro-sigmoid, if that's at all possible  I spoke with Dr. Friedman of the House Clinic 4 years ago and he got good recommendations.  If anyone has any other names, I would be very, very indebted to you.  I'm kind of old, but in good health, so hopefully I can stand the 7-8 hours under the knife!  But no doctor will attempt it if I'm not, I know that. 

Help!!

[alabamajane]

Hi,
I don't know about for retrosig but Evanston has an ear clinic with a great reputation. Dr Wiet, I believe Richard,, and there is another one with him. Batista?? Maybe ,,,, I know we used to have a poster ,,, Jan,,, that had hers there. Plus others I'm sure. Would be worth checking into I think. In my opinion anyway 
Good luck with your journey,,
Jane

[sharonov]

Thanks, Jane.  I remember her well, she went by the handle "leapy twins."  Thanks for reminding me about Dr. Battista.  I think he worked out of Hinsdale Hospital.  I'll look into it to see if he still operates there.
Sharon

[CHD63]

Hi sharonov .....

You are so right that only those of us who have experienced the pain from trigeminal neuralgia can fully understand how debilitating it can be!  I suffered with it for 7 months before having microvascular decompression surgery at the brainstem (via retrosigmoid) for immediate relief.

My TN was unrelated to my AN (opposite sides) and thankfully I did not develop TN again with my rapidly growing AN.

My decompression surgery was done at UPMC in Pittsburgh, but that was 22 years ago and the surgeons who did it are no longer there.

I went to House Ear in LA in 2011 for my second AN removal with Friedman/Schwartz when Dr. Friedman was still at House.  I had excellent results.  It pays to go to neurosurgeons who do this surgery frequently for the best results. 

Many thoughts and prayers for finding the right surgical team for you.

Clarice

[sharonov]

Thanks so much!  I've just about come to the same conclusion--House--and my MRI should be on its way to Los Angeles as I write this.  Wow, you went through brain surgery twice and are still OK?  That gives me great hope.

BTW, do you have any idea why Dr. Friedman is no longer at House?

[CHD63]

Hi again .....

Actually, counting the TN decompression surgery, I have had three brain surgeries and I am walking, talking, and doing everything I want to do.

As you know, Dr. Friedman is now at Keck/USC, having left House in August, 2013.  I had a long conversation with him at the ANA Symposium in LA the month he was leaving House, worried about where that left me (his patient).  He assured me I was his patient for life, if that was my choosing, and he would assist me in any way possible, should I have further need.  Blissfully, my follow-up MRIs have been stable (next one due in May, 2017).

As for why he left House, that is probably best to talk with him directly.  It is my understanding that in that time frame, medical grants were dwindling for research.  He not only does surgery, but enjoys the research aspect, as well.  It is also my understanding that about the same time House was unable to obtain previously awarded grants, USC approached Dr. Friedman with the enticement of being able to do both surgery and research at USC.

If you would like to talk, you can private message your phone number to me and I would be happy to call you.

Clarice