Jayne, TN Patient

Her Personal Story

My wife has had TN for about twenty years. It started out with pain on the left side of the face. Initially she thought it was the teeth, so after many visits to the dentist and many root canals she still had the pain.

We then went to an orthodontist. He treated her for TMJ. He gave her a brace to wear in her mouth when sleeping to help with the pain. This still did not work.

Then we went to someone to see if maybe there was something structurally wrong with the side of her face. Nothing showed up. He referred us to a neurologist.

The neurologist then diagnosed her with trigeminal neuralgia. She was only around forty-seven at the time and the doctor said that she was young to have this. He put her on Carbamazapin and this seemed to help her a lot. She stayed on the medicine, off and on, for about fifteen years and for the most part was doing fine. Eventually she was taken off the medicine and everything was fine for about five years.

Then it came back with a vengeance. For almost four months the pain was so bad she couldn't talk. She had to communicate by writing everything down on a pad. She couldn't eat anything solid. Drank a lot of Ensure to keep her stamina built up. She went from 130 lbs. to 115lbs. She went back on her medicine and they were of little help. The doctor also put her on Lyrica and this seemed to help a little. Then the pain got worse and they had her on Methadone when it was unbearable.

We explored many avenues to help her. We looked into Radio Frequency Ablation which puts a lesion on the trigeminal nerve to stop the pain. Also we looked into Gamma Knife therapy, which essentially does the same thing. There is also Microvascular Decompression which is more invasive but, in my opinion, the best way to treat this.

After doing a lot of research and visiting different doctors we were referred to the Medical University of South Carolina. She saw one doctor there who suggested putting a pacemaker like device in by the collarbone and running wires up to the brain to interrupt the pain before it enters the brain, but he wanted an extensive MRI done before anything would be done.

After the MRI, which took about thirty minutes, she was to referred to a doctor at the MUSC hospital. He said that the MRI showed that the cause was typical of this disease. An artery, after age, had become pressed up against the trigeminal nerve. Every time it pulsates it irritates and wears on the nerve causing the pain. In comparison it was like having your finger shut in a window for a long time.

He felt, as we did, the Microvasular Decompression was the correct procedure. The operation would take about two to three hours to do. He would make about a three inch incision behind the ear for entry. Then microscopically go in by the nerve and move the artery away from the nerve and then put a small piece of teflon between them to help cushion it.

The operation took two and a half hours to do. When she awoke the pain was completely gone. There was some numbness by the jaw but the doctor said that would eventually go away. After so many years with that nerve being compressed it would take a while for the numbness to dissipate. What a relief after so many years of pain. We're keeping our fingers crossed, but I think that we have finally found the solution. To us the MVD operation is the correct procedure. It treats the cause, not the symptoms.

Posted 1-28-08