Trigeminal Nerve Neuropathy

[Dealy]

I almost hate too post this but I need too let people know this can happen in Radiation cases. I had FSR Radiation last summer for a 2.5CM on my right side. I am an NF2 but this is the only tumor present at this time. I am 14 months out. Tuesday of this week I developed-almost overnight in a way sharp electrical shocks to my face from the Trigeminal Nerve. This are constant and do not cease. I was put on Neurotin 2 weeks ago because I had some small ones but nothing unbearable. I may be facing Toxcity to the 5th Cranial Nerve Now. Thsi is rare-2 too 3% but can happen. I have been instructed to see a local Neurologist that deals with Nerve Pain. My face feels like it is constantly on fire including the inside of my mouth and now their are days I cannot even eat decent. Have been living on pudding and Cream-Of-Wheat since Tuesday. Hope this does not deter anyone from choosing Radiation as a treatment option-just wanting too let people know this can happen. My wife told me I can get the wierdest maladies- I agree-not only am I an NF2-now I develope-as it looks to this point-nerve toxicity-what next. Robn

[Dealy]

I am going to answer my own thread because there is somewhat of an update to clarify. My tumor swoll at 9 months verified by an MRI. At one year it has decreased in volume. My facial nerve has been compromised since this all started in 2005 so this swelling-even though that was good even compromised it more-then the decrease. Anyway-by the process of elimination-my wife and I have concluded that some of the problem is the Neurontin. My face is fine until I take my dosage then the inside of my mouth feels swollen and within half an hour the systems are back just like before. I may be grasping for straws but I am under the impression now that I am having an adverse reaction to Neurontin big time. I still believe their is some radiation damage too the Facial Nerve but not too the extent that Neurontin-instead of muting it just intensifies it more. The sad thing is since this is a anti-seizure med I cannot just stop but have been advised too cut back gradually on dosage. We see our local doctor on Monday and won't be able too see a Neurologist till the end of October. My wife asked me last night if I was sorry I got Radiation now- My answer in one word was NO. Thanks_Ron

[nancyann]

Hi Ron:  I don't know what to say other than I hope you find some relief soon - I remember during one of my facial EMGs I was talking with my neurologist about having a little pain at times & wondered about the trigeminal nerve.  He told me I definitely don't have trigeminal nerve involvement, that that type of pain is unbearable. Take care,  Nancy

[Dealy]

Thanks Nancy for the concern and the comment. At times I do not know if this just happened or the Neurontin brought this on-because Tuesday of last week they had me increase dosage too 200MG on afternoon and that's when it hit BIG TIME-and it has been downhill ever since. I am scheduled to go back too workTommrow so I am really concerned now if I can work and bear this. It comes and goes> The area under my eye-bridge of nose is the one most affected now It feels frozen and when I get a shooter it goes directly too my eye-feels like someone is stabbing you behind the eye-very painful-then my eye aches for awhile. Just another stone (Maybe boulder) in the road when one has an AN. To think that one would consider these a piece of cake is far from reality-at least from my perspective now. Thanks_Ron

[ceeceek]

Hey Dealy,
Thought you would like to know how I have treated my Trigeminal nerve pain......
I cannot take either neurontin or lyrica...Neurontins little brother and many people fyi have much better success with it, and less side effects so you know...
Anyway,
I had endoscopic transphenoidal approach surgery to remove a 2.9 cm tumor that turned out to be a vidian nerve schwanomma...(long story how I wound up on this board but now everyone is stuck with me)...
Surgery was a success in that now we know what I have,,,,but they could not remove it. My tumor is growing along the trigiminal and vidian nerves and is wrapped around my carotid artery....if they pulled or cut the nerves anymore than they did, I would have even bigger problems.....So I am due to have CK in Oct...finally!!
But on to the trigeminal nerve...
After surgery due to pulling cutting etc my trigeminal nerves were needless to say exploding with pain. Not fun! I used acupuncture quite succesfully to deal with the nerve aggrivation. After just two treatments I would say I was 95% better and now it only bothers me on rare occasion. This is actually one of the reasons, that I did not pursue radiation right away as the nerves will more than likely get all aggrevated again, and we all wanted a little time for them to calm down first.
The acupuncture has also been used for the same issue from several other members on the board, if you look up trigeminal pain,you should find some good post.
My optic nerve was also damaged and that too has been treated so far so good!
Good luck, and if you are wary about acupuncture ask your doctor about lyrica, it is not as strong as neurontin and works well for nerve pain. Me, I did not want to take the chance with antisiezure meds.
Ceeceek