ALICE’S ADVENTURES IN TN LAND

Two days later I was back in the dentist’s office with the pain much worse. The ‘electric shock’ sensation was evident, triggered by eating, talking or brushing the teeth. Even the jarring caused by walking could trigger pain. It was also now clear that the pain was centered behind the back teeth and this also seemed to be the trigger point. (Incidentally, this is the spot where thirty years previously, I had an impacted wisdom tooth removed – a poor job, with complications.) There was also cramping pain along the side of the tongue and the floor of the mouth into the throat. This time the dentist was quite sure that the pain was indeed ‘Tic Douloureaux’. I was familiar with the term but really had no idea of the possible causes or treatment.

The dentist then sent me to a facial pain specialist who said the problem was either Trigeminal Neuralgia referred to as TN (the first time I heard this term) or Glossopharangeal Neuralgia (GPN). I think he wondered about GPN because of the involvement of the floor of the mouth. I was to take Tegretol for a week. If it took away the pain, that confirmed the diagnosis on one of the neuralgia’s. Tegretol did, indeed, take away the pain, but I also immediately felt side effects of sleepiness, disorientation and muscle weakness. I was told to see my family doctor, who recommended a neurologist.

I saw the neurologist on March 19. he was fairly sure the problem was TN. By the end of March, I had developed a rash from the Tegretol so I was put on Dilantin and referred to a neurosurgeon. Dilantin had even worse side effects that Tegretol but it stopped the pain. I was told that there was no support organization for TN and very little literature on the subject.

On April 24 I saw the neurosurgeon who outlined two possible surgeries: Radiofrequency Rhizotomy and Microvascular Decompression (MVD). He favored MVD and at first I thought that would be the way to go. As I thought it over though, I became hesitant.

On May 7 at the suggestion of my family doctor, I called the facial pain specialist again to see if he knew of a way to determine for certain which of the nerves was involved. He said to see the neurosurgeon about this. I asked if he thought the pain was caused by the after-effects of the wisdom tooth extraction 30 years previously. He said the Trigeminal nerve could do that but not the Glossopharangeal.

About the same time the neurologist prescribed Liorisal to supplement the Dilantin. Because Liorisal is a muscle relaxant I was suspicious of it so took only one-half tablet. It made me so disoriented and dizzy that I did not take any more. (The prescription was for 3 tablets per day.)

I was now dealing with four different doctors and becoming so forgetful and confused that I was having difficulty remembering who said what. Fortunately, I had been keeping a diary. So when I went to see the neurosurgeon again on May 8 I took my husband with me. He again reviewed the possible surgeries and gave us several options for determining which nerve was involved. As though in a dream I heard my husband say, "I think we should see the oral surgeon." I had not heard mention of an oral surgeon!

On May 13 I went to the oral surgeon, the fifth doctor. He did a test which involved injecting an anesthetic. (I had to go off the Dilantin for this.) The diagnosis was TN positively. I asked if there was anything he could do for the pain and he said sometimes alcohol injection worked. This seemed to me a good idea, if only to buy a little time for some serious thinking and the neurosurgeon agreed. In preparation for this I went through two weeks of testing different strengths of injected anesthetic.

The pain was becoming worse and I had the first ‘alcohol block’ on June 26. in the two weeks following I had three more alcohol injections which made my face and neck very sore. I went back on Dilantin for several weeks and by that time the TN pain had settled down to occasional light jabs. It seemed the alcohol had done its job but of course this was not permanent. The neurosurgeon agreed to wait.

By the time the pain returned six months later I had made up my mind that Radio Frequency Rhizotomy was the way I would go. I took Dilantin again until the procedure on Feb. 3, 1992. the surgery went well and I was immediately free of TN pain. The entire side of my head, cheek and tongue were numb. I was discharged next day. The numbness gave way to pain and over the next few days I experienced severe headache, poor sleep and nightmares. Just one week after surgery I found myself in Emergency at our local hospital with very high blood pressure, really scared and feeling terrible. So I spent a week in hospital having my blood pressure monitored and another month on medication, while not feeling well. When I saw the neurosurgeon on Feb. 18 he said the pain in my head could last a few months but was non-committal about the other problem.

In retrospect I am glad I took this route as it gave me eight pain-free years but I believe I should have gone off the Dilantin slowly and should have had better after-care.

I nearly forgot about TN and assumed I wouldn’t be bothered again. The in 2000 it gradually returned. By this time we had a different doctor and dentist. I was put on a low dose of Neurontin which had few side-effects, and I started on a search to find out if there might be something new. On the Internet I found out about the TNA in the United States and I ordered the book ‘Striking Back’ which was very helpful. My neurosurgeon had retired by this time so I went back to the oral surgeon. He told me about Dr. Kaufmann and arranged an appointment. In November, just before he left Calgary, Dr. Kaufmann performed a glycerol injection. I was immediately pain free. The only after effect was a bad outbreak of cold sores.

A bit over 2 years later, early in 2003, the pain returned, very slowly at first. Because my husband was experiencing serious medical problems, I tried to ignore my own pain hoping it would go away or get no worse. This was a mistake. By mid April I was having severe pain whenever I moved my mouth. I was put back on Neurontin but the small dose I had taken previously did not help much. I was unable to eat, drank very little and communicated by writing notes. After a couple of days of this I persuaded my dentist to freeze my jaw so that I could eat and drink for a few hours at least. I kept increasing the dosage of Neurontin until the pain was under control but at this high dosage I was a ‘Zombie’. I didn’t want to continue with medication indefinitely.

We learned from my husband’s neurosurgeon that Dr. Zelma Kiss took TN patients and I decided to try Balloon Compression. I had this surgery on Oct. 22 and for a few days afterwards my jaw was very weak and chewing was difficult. There was a definite numbness on the entire left side of my face particularly in the eye. I was instructed to decrease the Neurontin very gradually and was told I could possibly have five pain free years.

Less that a week after the surgery I felt unwell with a sudden rise in blood pressure and irregular heartbeat. I immediately went to our local hospital, was kept overnight, and soon felt better. This was so similar to the problem I had after the Radiofrequency Rhizotomy that I am left to wonder if either the anesthetic or the procedure itself could be the cause, and why the delayed reaction? No one seems to know.

Nine months after the Balloon Compression, the numbness which is most noticeable in the eye is slowly subsiding. It is wonderful to be pain-free and to think clearly again. If I should be asked for advice, I would suggest, on the basis of my experience:

Like many others I wait and watch, grateful for the help I have received, and just a bit nervous about the next time – and there will likely be a ‘next time’.

Alice Harder

RR #2

Carstairs, AB T0M 0N0