Recurrent trigeminal neuralgia

[Cithmore]

I am a 53 year old male, married. I was first diagnosed with tri geminal neuralgia at age 16 (yes that’s very rare); at the time I was treated successfully with tegratol. I was pain free for over 30 years when my TGN returned. I had micro vascular decompression surgery in 2002 which was 97% successful however this year my pain fully returned.
My surgeon has my switching from Gabapentin to Dilantin, by early this week I should be solely on 400 to 500 MG of dilantin per day however it is doubtful if the meds will fully control the pain so then my only real option is an injection which may cause permanent  facial numbness. I would like to know if anyone else has had to deal with recurrent trigeminal neuralgia and if so what was your outcome?
Thanks

[Cithmore]

Join Date: Jul 2008
Posts: 6
My Mood:

Default Surgery Yesterday
The surgery is over, it was rough, I was put out but not totally and when the doctor put the needle in my face it felt like I had just been shot with a gun point blank, I know I yelled, good thing my arms were held down.
I have pain from the surgery however my TN pain seems to be gone now, (but I am still taking Dilantin too).
The numbness from the surgery is in my left lower lip, tongue tip and pretty much all along my lower jaw line covering most of my lower cheek; I guess I will get use to it?
I feel like an amputee.
My jaw is VERY stiff, I also have to keep drops in my left eye so it does not get to dry.
I will know just how successful it all was when I'm off the Dilantin in 2 weeks.
If I do still have any TN pain when I'm off the Dilantin the doctor may want to do this again.
I think the worst is behind me now, I hope so anyway.

[Cithmore]

Dr. Lim
I saw my neurosurgeon yesterday and we agreed that the Dilantin I have been taking is not the best long term treatment for my TN so I am going to have PSR (Percutaneous stereotactic radiofrequency rhizotomy) on August 7.
My doctor is going to try to create the smallest lesion possible and hopefully the resulting facial numbness will be light.

[Cithmore]

Dr. Lim
Thanks for your reply. My neurosurgeon has me changing from neurontin to dilantin and I think the dilantin may be helping; my pain level has decreased yesterday and today.
I will see him again on July 7 and hopefully I will be able to report a good response to the dilantin. If the drugs do not work then he wants to try injection of glycerol.
I will post again after my next visit with my neurosurgeon.

[Michael Lim, MD]

In general, a recurrence of trigeminal neuralgia can be difficult to treat.  Patients who have a recurrence have multiple options, including getting another microvascular decompresssion.  However, because I do not have your history or records, I would not be able to comment on your condition.  It is reasonable to ask your surgeon about going over all the options.