My story began in September 2006 when I felt a sudden pain in my lower left jaw whilst on holiday. When I returned I went to see my dentist who could find nothing wrong with my teeth but prescribed some antibiotics as he thought there might be an infection. The course of antibiotics made no difference but I continued to experience sudden sharp attacks of pain particularly when eating or speaking. After experiencing this pain off and on for about two weeks I made an appointment to see my GP who suggested that I should see an oral specialist at the local hospital and made me an appointment for the following week.
The oral specialist arranged for a scan of my mouth and jaw. The results showed no gross abnormality and were summed up in the findings as “No definite cause for the patient’s symptoms as demonstrated on this examination.” The specialist however prescribed Carbamazepine to relieve the pain when it persisted. Returning home my wife had decided to research mouth pain on the internet and said “You’ve got Trigeminal Neuralgia which is described as the most excruciating pain known to man and has no known cure. The drug you have been given is the best available for the condition.” Now I have never liked taking drugs of any type not even for a headache so did not take the Carbamazepine straightaway hoping the pain might clear up. By this time the excruciating pain had started to affect me not only eating, drinking and speaking but even shaving. It got so bad that I started taking the Carbamazepine and after a few days the drug did suppress the symptoms. Then after about 3 months the pain suddenly subsided altogether and I stopped the Carbamazepine.
The pain returned six months later and then went into remission for several weeks before returning again. Then into remission again, each time it returned the pain intensity was stronger. I carried on like this for the next four years until Carbamazepine no longer worked. It was also causing me to have a very irregular heart rhythm. My GP then prescribed Tegretol which for a time gave better results. I also tried to manage the pain but found it was affecting my way of life so, in desperation, I returned to my GP again who referred me to a Consultant Neurologist in Edinburgh. After the consultation the Neurosurgeon confirmed the diagnosis as Idiopathic Trigeminal Neuralgia. His suggestion was to keep trying different drugs Oxcarbazepine, Pregabalin, Phenytoin. He also suggested a form of surgery now being performed by a colleague Consultant Neurosurgeon.
It was May 2011 when I saw the Neurosurgeon (privately) at Edinburgh Spire Murrayfield Hospital who sent me for an MRI scan which revealed that there was a small blood vessel, touching the trigeminal nerve. He described to me the options of continuing with medication by trying different anticonvulsants. Injections with Glycerol which may have to be repeated or surgery – microvascular decompression – which was likely to be the most successful with a 10% chance of recurrence, however, he explained that there could be serious consequences. I decided to continue with medication for the time being as it was manageable with periods of remission. Whilst not new to hospitals due to previous surgery, I was never keen on them even as a visitor so decided against the surgery for the time being but to continue taking Tegretol when needed.
It was three years later when after remission of several weeks the pain returned and was so severe that I resorted to the Tegretol once again. This time there was no more remission. I tolerated this by taking increasing amounts of the drug until it was over 200 mg a day. I was suffering abnormal heart rhythms again as well as double vision.
It was whilst on holiday in November 2014 that the high dosage of Tegretol had me falling over with dizzy spells and double vision. I was stumbling all over the place due to the amount of drug I was now having to take. This episode made up my mind to go back to and see the Neurosurgeon when I returned home.
I made an appointment just before Christmas 2014 and explained my symptoms and how the pain had intensified. After another MRI scan the neurosurgeon once again explained the options. He did however point out that if I left it much longer he would not carry out the procedure due to my age, I was then 71. After discussing at length again with my wife and having a look at the YouTube video showing the surgery, my mind was made up and I decided to proceed with the surgery. I had to wait until 3rd March 2015 before I could be admitted to the Edinburgh Western General Infirmary where the same neurosurgeon also worked and the Western General had the specialist equipment that was needed for the operation.
Four hours after the start of the operation I was waking up in the intensive care unit and eventually realised I was pain free. An hour later my wife and younger son came to visit me but I hardly knew they were there. I had a morphine pump which I controlled by squeezing if I experienced pain from the surgery, but remember little else. I was in the intensive care ward for two days and then transferred to another room. I stayed in hospital for a week in total before being discharged. The neurosurgeon checked on me every day for any signs of complications with hearing, eyesight and face numbness but thankfully there were none. I had a large scar behind my left ear running down to my neck with staples holding the wound together. The staples were removed on the day of discharge. I thanked the staff of the Edinburgh Western General. I could not have been looked after any better; the care and attention was excellent.
I was on strong painkillers for headaches for over four weeks. I also suffered nauseousness and loss of appetite for a similar amount of time. After six weeks I returned to see the neurosurgeon who again checked all my functions of hearing speech and sensitivity to the face. It was almost six months since the operation that I felt I was back to normal fitness. I was pleased that the operation has been such a success as I have no further TN problems so if this personal account is of help to others than all I can do is wish you well as I do know how excruciating the pain from TN is.