I have had trigeminal neuralgia for over 3 years, primarily treated by tegretol, depending on the severity of the episode. The amount of tegretol was steadily increasing, and I was having difficulty managing the pain, the medication and full-time work.
I attended a presentation at a meeting of the Trigeminal Neuralgia Association, given by Dr Dexter on trigeminal neuralgia and its possible causes. I decided to discuss my options for surgery with him.
He requested an MRI to be taken. My previous scan had not been taken in fine enough slices to identify the probable source of the pain.
After viewing my scans, he was able to show me that the superior cerebellar artery had a downward loop onto the trigeminal nerve. I was a suitable candidate for microvascular decompression of the trigeminal nerve.
I was admitted to hospital the day before my operation. I was given a detailed description of the possible risks, including infection of the wound or brain, excess fluid build-up or leakage, deafness and nausea with vomiting.
The next day, I was given a light sedative by the anaesthetist, and I was away.
I woke in Intensive Care – one nurse watching two patients very closely, and taking observations every 5 minutes. I didn’t feel fuzzy, but didn’t care very much either. I knew where I was and what had been done.
The pain in my mouth which had been severe and constant was gone. One side of my face was numb, although I could use and move my tongue normally.
I vomited almost immediately, but had been warned that this and nausea were usual occurrences. My eyes were checked regularly for signs of internal bleeds.
My hearing had been tested before I woke, and found to be undamaged.
My blood pressure had risen very high before the operation, probably due to anxiety and pain. Over the 24 hours I was in ICU, it dropped back to normal.
After a little while, my husband was allowed in, and was relieved to see me able to talk and respond normally. He had been worried about the seriousness of the procedure.
I was able to eat a light dinner, and it stayed put. The nausea was never as severe again as when I had first woken.
Once I was recovering normally, I was moved up to my room. I had been warned not to touch the wound as it risked infection, including meningitis. I had a bed bath with enormous wipes and felt much better.
I asked my husband to take a photo of the wound, as I couldn’t see or touch it. It was about 13cm (5“) long and behind my ear. My head had been shaved in a smaller patch than I expected; as long as my hand and about half as wide. The wound was held together with 18 surgical staples.
By the evening of the second day, the pain in my head had subsided to a persistent headache. I did not get the fluid build-up or swelling below the wound that had been warned. There was a massive bruise and my neck became tender and painful. This was explained later as stiffness from holding my head turned, keeping the wound off the pillow.
Observations were taken regularly, and included neurological tests of my pupil responses, my personal details,location and the date, and the relative strengths of my hands and feet as well as the usual temperature and blood pressure.
I had heparin injections twice a day to thin my blood, and because my sodium levels were down, I was placed on salt tablets.
Over the next week, the nausea passed and the headache faded to a dull ache. The neck tenderness vanished completely. I was reviewed daily by the physiotherapist for balance, walking and managing steps. Once I passed the checklist, I was encouraged to walk often around the hospital to help avoid clots in my legs. It was then the long path of recovery.
My hair was washed with an antiseptic wash every day. I had CT scans on the 1st, 3rd and 5th days after the operation and an ultrasound on both legs on the 5th day, looking for blood clots. I found the ultrasound to be very painful.
The staples came out with little pain or difficulty 7 days after the operation, and I was discharged.
The numbness on my face gradually retreated. Two months after my operation, I am left with tingling on my chin and ear, and the neuralgia has not returned.