NeuroTalk Support Groups - diagnosed with Atypical Trigeminal Neuralgia

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- Trigeminal Neuralgia (https://www.neurotalk.org/trigeminal-neuralgia/)

- - diagnosed with Atypical Trigeminal Neuralgia (https://www.neurotalk.org/trigeminal-neuralgia/92710-diagnosed-atypical-trigeminal-neuralgia.html)

Quote:

Originally Posted by lowballartist (Post 534603)

Hello, I have been going thru the pain/discomfort of ATN for close to twelve months now and am tired of medications to dull the pains. I have been going to the Univ of Michigan neurology department and until not too long ago they did not want to perform surgery, now that they say it is an option although with only a 35%-55% is it really worth the effort of going through with the surgery...........of course it is worth it because if you do not try the MVD you will have no chance whatsoever of getting any better. Have you or anyone that you may know had this surgery at the U of Mich.? The neurosurgeon that is treating me has done close to 800 of these procedures over the past 15 yrs or so and use to work with a Dr Jannetta in Pittsburgh who is apparently at the top as far as these surgeries go so I have plenty of faith in my Dr. Does anyone have any reccomendations for me in dealing with all of this??

I went to Pittsburgh to have Dr Peter Janetta perform this surgery on my ATN. He actually was the founder of the surgery. Very nice man.
It worked for about 8 months. Not completely, but I cut down on my pain killers for a while.
When it came back, it seemed 10 times worse.
I would suggest anyone try it. You may be one of the lucky ones that it does work fully on. THAT would be great.
I cant even imagine what would it would be like not to have pain anymore.

Well I have ATN also. I've had it for 2 years due to a tooth extraction...damaged nerve now. I'm in constant pain. On Neurontin...3,000mg a day and Tegretol. They help a little. My Neurologist won't give me anything else...said you should not be in any pain at all with those..... Well. I AM!!!

Quote:

Originally Posted by lowballartist (Post 534603)

I have just recently been diagnosed with atn and I was curious as to how you are doing ?

As another person has posted about, ATN, generally speaking, means there is no compressed nerve in the brain. This means that MVD surgery is VERY unlikely to help as it would almost be luck for the surgeon to find a compressed nerve. Those with TN, often have a compressed nerve that shows up on an MRI and they are fortunate in that an MVD (brain surgery!) often does help.

I've heard Dr. Janetta is one of the best.

I've heard, again, that medication is very likely the best tx for ATN.

For the person whose father has migraines, Topamax, is FDA approved for migraines and is very effective. I take 50 mgs daily for my migraines and it has helped. I would take more, but it causes memory loss. When I get an actual migraine, the medication Imitrex is awesome. It can also be taken in a low dosage...like 50 mgs

Neurontin, Lyrica, Elavil...are all meds to try for ATN. It often takes a combination of meds to get some relief. I'm on several. We just added Baclofen and I'm very happy with it. I was having great trouble driving in the car previously and this med has helped to make that better. (Car travel over about thirty minutes triggered more ATN pain for me).