Large tumor and trigeminal neuralgia

[resox84]

Hi all,

This is my first post on this site, but I have been reading all the comments here and am very grateful for having discovered this site.

I began experiencing frequent facial nerve pains in April 2013, which later became daily in late October. Initially, since the pain was localized near the front of my face, my dentist thought it was an issue with the teeth and performed a root canal. When the pain persisted, my primary care doctor (and a facial specialist) believed it to primarily be trigeminal neuralgia. After months of various doctors and dentist appointments, I was finally diagnosed with a large 3.2cm AN on my left side in mid-November 2013.

I've consulted with 3 different surgeons -- 2 from southern California Kaiser and 1 from HEI -- and all 3 have stated that radiation isn't a feasible option given the size of the tumor and my age (29), with Dr. Wilkinson from HEI stating that it is partially cystic. After much consideration, I opted to go with Translab to be performed in Feb by Dr. Cueva and Mastrodimos from San Diego Kaiser. Others who chose them have given them great reviews, and I believe their experience in AN surgery and working together as a team will be key to a successful surgery.

Given that my trigeminal neuralgia is now active on a daily basis, I was wondering if anyone else had their TN disappear after their AN was removed? I fear that since I still feel some tenderness around where my root canal was performed, that the TN will persist even after surgery.

Thank you all for the great information thus far. Cheers to staying positive!!

Randy

[mindyandy]

Randy
I can actually say that I know what your going through.  My AN was not as big pre op but I had trigeminal pain. I had surgery at HOUSE. I still have my AN. you have to read my past posts to know why. I am doing well since surgery. Feel free to ask questions & I will do my best to answer.

Mindy

[Klautt]

Just wondering if OP has a 5 year follow up, as I am in the same scenario with TN prior to surgery, and now worse TN. Looking for hope. 

[kurtenbachj]

I'm not the OP, but my experience mirrors his almost exactly, including the dental issues. I was suffering major TN and eventually, after seeing a number of medical professionals, I was diagnosed with an AN and had translab surgery by Drs Cueva and Mastrodimos in November of 2013. I had my 5 year check-up in November of 2018 and got the "all clear" !!!

My balance is good, although I have learned to not make any quick, twisting moves while getting up. Can't ride a bike anymore, it's just too much for my system to process. Walking and jogging are no problem at all. At this point, the biggest issue for me is identifying where a sound is coming from. I can hear it, but can't tell it's origin! I suppose that's a fair price to pay. The TN was really bad and I am so glad to be rid of it.