In January 2000 I undergo a root canal. I keep returning to the dentist, as I still have pain in the area of the root canal tooth. Now it is April 2000, and the dentist sends me to see a dental surgeon. The dental surgeon feels that it is not a tooth problem and makes an appointment for me with a neurologist. That appointment is three months away, so I call my MS neurologist and see him within three weeks. Diagnosis, Trigeminal Neuralgia (TN), called the most excruciating pain known to man. Ok, to a man, but women, birth our children. I met a woman with TN, and she tells me that she will gladly birth ten children, rather then have one bout of TN pain.
Ok, now it is August 2002, and I have agreed to a radio frequency Rhizodomy. Never again, but at least the TN pain is gone for now. My HFS began in 2003 with winking of my left eye, sometimes for a hour steady. My wife would often comment "Stop winking at me!" and then laugh. In July 2003 my TN is back. I took Carbamazapine, up to 2,000 mg/day, plus Baclofen, up to 90 mg./day. Even Gabapentin, 1,200 mg./day. And to make the pain tolerable, 200 mg/day of Demerol (Morphine doesn't work in me).
In August 2005 I tried gamma knife surgery but it didn’t work, so we tried a balloon compression Rhizodomy on September 27, 2005. There was not enough nerve damage, so redone on October 04, 2005.
Around Christmas 2005 it returns and I'm back to the high doses of medication, even tried 2,200 mg of Carbamazapine, lost my balance at that amount, so back to 2,000 mg. Another balloon Rhizodomy March 15, 2006.
In August 2006 my face starts contorting to make me look like Popeye with my left cheek all drawn up into a ball. All that I needed was a pipe!
In April 2007 the TN pain is back, and it wants to make up for lost time! I call Dr. Kaufmann's office and he says surgery to cut the nerve, as soon as there is an opening and I agree.
Someone cancels and I get the call, meet Friday, May 18, 2007 with Dr. Kaufmann and surgery on Tuesday, May 22, 2007 at 7:30 AM. While meeting with Dr. Kaufmann to discuss the plan, my wife mentions that the facial spasms didn't allow as much "pain free time" as we would have liked, as it kept pulling my jaw out of alignment and causing pain. Dr. Kaufmann is in awe, of the number of patients he has seen in his career to date, I am the first one with HFS, TN and MS all in the same body! He suggests a MVD for the HFS and if a blood vessel is the culprit, a MVD for the TN as well, otherwise he will cut the nerve.
Surgery lasted seven hours; well at least I didn't come out of there until 2:30 p.m. I was in recovery for another three hours, and the step-down room overnight. The face pain was gone, but the headaches were awful. Headaches were gone on Friday am when Dr Kaufmann came to see me and let me go home. Today, July 05, 2007, I am still TN pain free. I have some spasms still, but it is only July, let' s see what the future holds.