trigeminal neuralgia

[mary2223]

my son developed trigeminal neuralgia after a dental procedure. he is presently on medication for it. he is  28 years old and what is research showing for future care.

[nancy99n]

I've only had trigeminal neuralgia since Dec 17, 2008 and am 47 years old.  I was told I'm "fairly young" for this disease, but I also have multiple sclerosis, so that may have been a contributing factor.  Your son is much younger than me and that may be a big factor in what a doctor may advise.

My advice is that your son find a doctor who specializes in TN, preferably at a teaching hospital in the nearest big city.

My pain was brought under control with medication, but I did not want to remain on it long-term.  I asked and was advised on which surgical procedure would be appropriate.  I've had that surgery within the last 10 days.  They say I won't know if it worked for up to 3 months.  There's also no guarantee that the TN won't come back.

There's lots of good information on reputable hospital websites (like this one).  There's also the Trigeminal Neuralgia Association that can connect your son with support groups and clinical trials.

Good luck and all the best!

[facehurts]

how was the surgey for you? i am 33 and due to have surgery on may 12. i am very worried about it.

thanks

[nancy99n]

The hardest part was when they put the frame on your head -- the local anesthesia is given with a needle and is a quick sharp pain.  Then they attach the frame, and you feel pressure.  The good thing is within a few minutes the local anesthesia takes effect and you don't have any further pain.  Luckily my 3 doctors moved very quickly.  When it was happening I complained, but in retrospect I am very glad they did not drag the process out.

My hospital had a DVD in the room and I watched a movie and had breakfast after the MRI while the doctors were mapping out where to zap the gamma radiation.  They also told me to bring a CD, which they played during the gamma knife part of it.  The gamma knife machine makes no noise and there is no pain -- I brought a CD that I knew had 3-minute long upbeat songs, so I could do a countdown of when the procedure would be done.

The aftereffects include facial swelling from the frame -- that started shortly after the gamma knife procedure.  I put ice on my face to bring down the swelling.  The nurse gave me Tylenol afterwards and told me to take it every 4-6 hours to avoid every getting a headache and that worked well - no headaches at all.  The second day I had fatigue and nausea from the radiation.  The oncall doctor supplied me with a prescription for the nausea.  I had the procedure on a Wednesday and was back at work by the following Tuesday.  I did go home early Tuesday and Wednesday and took a nap due to some residual fatigue.

I am still on my pain medication (Trileptol).  My pain doctor said it would be 3 months before we know if this worked.

I'd say do the gamma knife -- any hope of stopping the pain is worth it.  I'm staying positive and hoping for the best.

Good luck and best wishes!

[LISA608]

THANKS FOR ALL THE INFORMATION. I AM 39 YEARS OLD AND HAVE BEEN IN PAIN FOR THREE YEARS ON AND OFF. CURRENTLY, I AM TAKING GABAPENTIN 300 MG BUT MY PAIN IS LASTING LONGER SO THE DOCTOR WILL HAVE TO INCREASE MY MEDS. I AM ALSO CONSIDERING THE GAMMA SURGERY PLEASE KEEP ME UPDATED TO HOW U R FEELING.

[nancy99n]

To Lisa,

My internist prescribed Gabapentin and it didn't work for me.  Then I went to my MS Neurologist and he prescribed Tegretol, which also didn't work for me and made me feel like a zombie.  The facial pain clinic I was referred to was fantastic and the doctor there prescribed Trileptol that he slowly increased (to 600 mg/3 times per day) until the pain was effectively controlled.  My suggestion -- find a doctor that you trust and that works with you and talk to the doctor about increasing the meds until the pain is gone.

As for the Gamma Knife -- so far, so good.  Saw my pain doctor mid-May and he said I could start reducing the Trileptol, one pill every four days.  At first, it was slow going, but as of tomorrow I'm reducing down to only 3 pills (out of the original 6).  I see my pain doctor again on Friday and really think the GK has worked!!  I'm having excellent, totally pain-free days.  Doing normal stuff -- like washing my face, brushing my teeth with NO PAIN!  Eating is no longer a problem...I even had popcorn last night!  Amazing how we appreciate the little things when just a few months ago they were almost impossible.

Again, I suggest working with your doctor and figuring out what the best surgery is for you.

Good luck and I hope you find a solution to your pain!
Nancy