Hi I am a newbie....as we speak I am pain free due to two gamma knife procedures. One 2005, then 2006...Just curious if anyone out there has some of the weird sensations I have as a result of the procedure..I know it is a trade off but VERY WEIRD.

When they severed my trigeminal nerve five years ago at Mayo clinic, I immediately became numb on that side of my face. Although numb, it became a burning sensation. Then came the ping on my lip because part of my lip is also numb. The squigley sensation started, the tightening started and more and more pain. It has been five years and it is still going strong. Oh yeah, it has a name "Anesthesia Delorosa".
I hope you do better than me. Are you having any numbness? Do you hurt or just have freaky sensations? Doodle bug7

I have had numbness almost immed. after 2nd gamma knife..feels like I have been to the dentist 24/7...I get tingling like creepy crawlers..like when your
foot falls asleep...I actually have to ask people when I eat if I have anything on my face...My eye has become a little WINKY as I put it...feels like there is something in it or like it is running...I am numb from forehead to lip...lip is the worse..that was always my trigger with the TN...that side of my face feels warmer/gets red...everynow and then I get a sharp pain..but still it doesn't stay and it is NOT like what I experienced in the past. My neurosurgeon said the nerve could regenrate..I guess time will tell...
thanks for writing I have been curious if anyone else who had some procedure had some after effects that were similar

Hi Doodle bug7,
I read your response and was curious if what I have is Anesthesia Delorosa as well. I had the MVD procedure done in 2004 to remove a tumor from the trigeminal nerve area and ever since then I have been numb from my forehead to my chin. Is this similiar to what you are going through? Is there any medication that you use or have used that have helped out. The numbness is always there and I have the tightness/pulling sensations as well as the shocks around my lip/nose area. Is there anything I could do to help out with this?
Thanks,
-cltmet70

I am also numb from forehead to chin...I have never taken anything for it..as I said it is a trade off but I admit very weird sensations 24/7..I had the gamma knife (2x)

It is a trade off, but very painfull at times. My Neurologist put me on Keppra 500mg twice a day and Baclofen 10mg as needed.
Do you see a Neurologist for your numbness? Does he think that your feeling will ever come back in your face?

he said there is always the possibilty the nerve can regenerate..i am afriad with that could come the severe TN pain..the meds youare on what do they actually do??? they help the numbness/pain/pulling sensation. I opt not to go any meds if at all possible...had a bad run for awhile from meds....actually my neurologist never made mention..yet I never asked.

Most of the time I believe my pain is going to do what it wants with my meds or without them. My eye has been a constant reminder that it is involved with issues of it's own. I haven't gone to a regular ophthalmologist, I see a Dr. who also does Laser surgery, retinal eye treatment etc. I have been going there each month for five yrs. Due to the dry eye effect, He put a plug in the corner of that eye. He took it out, and then he put a permanent plug in. My eye right now is on an even keel, although when it gets blurry I use drops.
The medications, Some of them I take three tiimes a day,
1. Hydroxyzine
2.piroxicam
3.Neurontin (Gabapentin)
4. Lyrica
5.Amitriptyline
6. requip ( for restless leg syndrome
7. paxil
8. Alegra
Dr. weaned me off narcotics ( methadone , oxycontin, morphine suckers )
I have more pain now without the narcotics but I was doing some strange thing. I fell out of my chair several times because I was leaning way over to the side. I would fade in and out several times each day. Anyway, I wasn't even safe during this time. Let me know how you are doing. I could probably answer some questions as I have gone through much.
Truely a believer, Dbug7

I agree with you on the pain doing what it wants. I currently take Keppra 500mg twice a day, but I'm not sure if it is making anything better. I have tried Lyrica, but found out that I was allergic to it. As far as my eye goes, my Opth. mentioned putting a plug in the corner of my eye but he didn't recommend it. Do you get really frustrated with the constant tingling on your face and the sudden shooting pains? Have you found anything that helps you deal with it?
Any suggestions would be appreciated.
Thanks!