Hello everyone,

I'm 26 years old and have had trigeminal neuralgia for about 5 years now. Up until Christmas time I have been able to take tegretol and it got me through my pain. I also have had 2 remissions, one lasting for over a year. A month before Christmas I had an attack that let me experience a level of pain I didn't even know existed with neuralgia. The first time I experienced it I was just sitting in my computer chair and it felt like something grabbed my nerve and wouldn't let it go, it was paralysing! I literally couldn't move for about half the month, and this included laying down. I had to prop my head up with a pillow in a chair sitting up. I had to go to the docotor and get tylenol three and then demerol since my tegretol was not working at all. Since I work at a daycare sitting still and not moving or talking was not an option for me so I ended up missing quite a few days of work.

Just before Christmas my neurologist rearranged my medication (God love him) so I took 500mg of tegretol in the morning and then 500mg at night. This was great up until the end of January. It was like my tegretol wasn't working again but it still wasn't at that level of pain like before but I couldn't talk, or eat which again made it hard to do my job.

I was sent to a neurosurgeon who I really like and he has suggested for me to get an MVD surgery. I am now on 1600 mg of tegretol the max and no other meds that my doctor has tried work for me. Once again I've had break through pain and there isn't much else to do but wait until I go for my surgery.

My neurosurgeon is cheif of staff for neurosurgery in our children's hospital as well as "one of the best" according to my neurologist. The surgeon said since my neuralgia is genetic he's not sure if he can do the MVD but he won't know until he gets in there and if he can't he's going to cut the nerve. I have read on here some bad things about nerve cutting but I'm hoping he knows what he's talking about. All I know is that I'm scared out of my mind!!!

Thanks a lot for your help/suggestions/prayers,

Amy

definetly prayers are with you. what do you mean by genetic? did a family member also have this? sometimes cutting the nerve can make or have the nerve regenterate with with lots of little neuro fibers wich can lead to more pain wich can lead to a harder treatment plan. not trying to scare you just letting you know what my nuero guy told me. i have had about 8 destuctive procedures but never actualy cut the nerve. also can leat to ad something delarosa. sorry too early to pull the entier phrase out. pm me if any more questions and i will get you the number to the tna website nurse. if you want. also have you read striking back? awsome hand book for anyone with tn. if you can not afford i can amil you mine or a copy of parts of it!-shelly

Hi, I am so sorry you have this horrible disease. If I can make a suggestion, I think a couple of opinions might be a good idea. Severing the nerve is a permanent option that can lead to many other problems. I have gotten 4 opinions and have now a new diagnosis to my problem with a less invasive option. Check out as much information as possible. Jen

You might try CranioSacral therapy. With a history of remissions there may be a shifting of cranial bones in responce to posture contractions that put pressure on cranial nerves. I have found this several times in my practice.
Hans Albert Quistorff, LMP
Antalgic Posture Pain Specialist

Amy, my heart goes out to you. I developed trigeminal neuralgia on both sides of my lower jaw (both left sided and right sided) in 1988 at the age of 39. None of the tegretols or neurontins worked for me. I had atypical pain the the left (a constant high burn) interdispersed with electric socks triggered by eating dringing air yawn tooth brushing. By 1993 I was about to blow my brains out. I did know, tho, in about 1992, that I did also have an autoimmune disease (like lupus) and osteonecrosis of the jaw bones (inflammation of the bone cells pressing on the trigeminal nerve). Knowing this, I still opted for a MVD done by Dr Janetta In Pittsburgh. I was so desperate. Unfortunately, it did not work. However, if you have no other health problems (as I did) at this time that might affect your success rate, I would go for it. The surgery is relatively safe now and does not take a great deal of time to recuperate from. This is a likely permanent fix foryou. Good Luck. Nancy