Trigeminal Neuralgia

[cburley1]

I had my gamma knife for acoustic neuroma one year ago this past feb 7... over the last couple of months I've been having more pressure in & behind my ear, more headaches that are close to migraine, face hurting a little....almost like a bad toothache that hurts into my jaw with sensitive back teeth. This is all on same side as tumor, now in Feb my mri read that my tumor was 2mm bigger and where there had been necrosis it is filling back in...my ENT feels that maybe the growth difference is because of my last 2 mri's being different cuts...3mm & 5mm....anyways, I've now been diagnosed with trigeminal neuralgia...gotta say that after reading about it...it scares me almost more than being told I have a brain tumor....My neurologist doesn't know for sure if it is because of the tumor, it makes sense to me that if it is on the same side & just started when I may have growth or swelling of the tumor, that it is because of the tumor. And I'm hoping when the swelling goes down that the neuralgia goes away....any thoughts on this?

[mindyandy]

Hi there. I'm sorry to hear about your recent pains. I can honestly say I had been there. I'm not too sure how much pain you are in but I do know trigeminal pain is horrific. I had CK done 4 years ago and had developed trigminal neuralgia last November. Doctors could not say for sure the 1 to 2 mm growth was growth or just from different images etc. I was put on Dilantin for the TN pain but come to find out I was allergic to the medication. So I just suffered the pain until last March 7th when I had Retrosigmoid at House in LA. I am now 10 days post op and pain free. Thank goodness. I still have excellent hearing and my facial nerve is great. Dr. Schwartz and I decided to not get aggressive on the tumor since he did not see growth and the ultimate result I wanted was to maintain my hearing/facial function and to take as much off the trigeminal nerve this way I was pain free. This was the goal. I still have my AN but like Dr. Schwartz (who has removed 1000's of AN's) we both agreed since I had radiation and it shows no growth (he looked at all my scans) that he/we wanted to maintain my excellent hearing and preserve the nerves.
I do hope this is not the case for you. Trigminal pain after radiation does happen but apparently it is rare. Kinda like AN's themselves right. Do keep us posted on how you are feeling. I do know where you are coming from.

Mindy