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.

My Neurologist said that usually if a nerve is going to regenerate, it happens within the first three years. It has been 4 1/2 years and nothing. It's just frustrating as you know.
The medications that I take are for the stabbing pains that I get and the constant pulling/crawling sensation. I'm not sure I believe they are doing anything for me. The Neurologist said that if these didn't work, they would just try something different. I just wish I knew of something that would work.
Do you have any problems with your eyes getting to dry. For some reason ever since the surg. I have problems with severe dry eyes.
-cltmet70

I went to the eye doc several times..saying my eye was dry or my eye was watering...he gave me drops for the eye...howver he said my eye was neither..It was strictly just the sensation I was feeling as a result of the gamma...weird.
My eye onthat side (I CALL IT MY WINKY EYE) is def differnt from the other eye. In photos it is very apparent...little closed..Oh well..people say they don't notice but I do

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Anesthesia Dolorosa

Description

Anesthesia Dolorosa (AD) is one of the most dreaded complications of the treatment of trigeminal neuralgia. It occurs when the trigeminal nerve is damaged by surgery or physical trauma, resulting in numbness in the face, with pain present within the numb area.
Causes

AD is caused by injury to the trigeminal nerve, either deliberately as during ablative treatment for trigeminal neuralgia, or accidentally as during injury to the trigeminal nerve for some other reason.
Symptoms

The two main symptoms of AD are facial numbness (much like the numbness from a dental anesthetic injection) and constant pain. The pain is usually burning, pulling or stabbing but can also include a sharp, stinging, shooting or electrical component. Pressure and "heaviness" can also be part of the pain symptoms. Often there is eye pain. Cold increases the feeling of numbness sometimes making the face feel frozen.
Diagnosis

The diagnosis of AD is made when patients have an area of total numbness in the face that is also painful. Quantitative sensory testing is a test that confirms that the affected area is, in fact, numb, but this test is not necessary to make the diagnosis. If the painful area of the face has partial sensation, then the correct diagnosis is trigeminal deafferentation pain (for patients whose injury occurs during treatment for trigeminal neuralgia) or trigeminal neuropathic pain (for patients without trigeminal neuralgia).
Treatments

Unfortunately, there is no known effective treatment for AD. A multidisciplinary, pain-management-oriented approach is most appropriate. Some helpful strategies include anticonvulsants, antidepressants, opiates, psychological support, and complementary and alternative therapies. There are no good surgical options at this point, but motor cortex stimulation has shown some promise in preliminary studies.
The Pain Team

* Christopher J. Winfree, M.D.

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