DIFFICULTIES WITH DIAGNOSIS AND GAMMA KNIFE TO THE RESCUE
This report is about me, Mark, 29 years old and profoundly deaf. I have been suffering Trigeminal Neuralgia (TN) twice for over 8 years since from 21 year old. Here is my experience about this atrocious illness.
In May 2011, I was a student at Sheffield Hallam University (SHU) and was on my work placement year in Hull when I had both the bottom back wisdom teeth removed. A couple of months later the pain on the right side of my face started to slowly increase, it was more sensitive and felt like it was burning, and I had more toothache. Then the pain gradually worsened, it became shooting pain and severe electric shock type pain which spread from my right ear radiating throughout my cheek. My jaw was in tension and my teeth clamp and grind tight together.
When this excruciating pain was happening, I had to stop what I was doing and put both my hands on the right side of my face, and I cried too because the pain was so severe. I started to lose some weight to seven stones because I wasn’t able to eat meals or even drink very well because it was so painful and took a long time. I couldn’t brush my teeth too because it hurt so much. It limited me going out like I used to do such as see my best mates for a drink or going shopping and it affected all my daily life as well as disturbing my night’s sleep. I felt physically tired and emotionally stressed, so many times I wished the pain would go away but it didn’t. The only medications I was taking at this time were painkillers Codeine, Ibuprofen and Paracetamol but these were not helping me. My family all tried to help me but it was difficult as they also couldn’t understand why I had this pain.
I had seen my dentist regularly to see if it was a bad tooth or something else but he did not find anything wrong with my teeth so referred me to Sheffield Charles Clifford Dental Hospital to see a specialist dentist. My first appointment was in November where I saw a consultant in oral surgery, with the support of my parents and a British Sign Language (BSL) interpreter, we discussed this awful illness. The consultant thought I had Temporomandibular Joint (TMJ) and referred me to a physiotherapist to see if it could help improve it and arranged to see me again in 4 months time. My first appointment with the physiotherapist was in December and after some tests I was given jaw exercises and massage to do. Unfortunately, over Christmas the pain increased and on Christmas day, when the whole family gets together, I was embarrassed to eat in front of them because it was so difficult due to the severity of the pain and I did not want them to see me crying.
I was so frustrated as nothing seemed to be working, I was in so much pain. I started to look on the internet and research what my symptoms could be and what could help reduce this pain. I discovered about TN and a medicine called Carbamazepine. I took my research and went to see my GP who thought this might help and prescribed me 100mg – 200mg of Carbamazepine.
When I returned to the physiotherapist in January and explained how I had been, he felt that I could have a neuropathic pain since the physiotherapy had appeared to aggravate my symptoms. The next month was my appointment with the oral surgery consultant where we had a long discussion about my medications and thought the next step was for me to try tricyclic antidepressants as an analgesic and muscle relaxant drug which would require monitoring to find the correct dosage. I explained what I had found out about TN but they felt that I was too young to have this condition. The consultant also referred me for cognitive behaviour therapy due to the severity of the pain and the fact I would panic when the painful electric shock type pain happened. My next appointment with them was for 4 months and I was to have an MRI before then.
I was still having a lot of pain, severe shooting, electric shock type pain which spread from my right ear radiating throughout my cheek to my mouth, it was so sensitive and felt like it was burning. I was feeling really depressed and my concentration was poor. I was in my final year at university and because of this I found it difficult to meet my dissertation deadlines. I did manage to complete my degree in June 2012 and I was awarded a 2.1 which made me very happy.
My pain did not reduce and I tried different combinations of my medication seeing the oral surgery consultant every 4 months. The Carbamazepine gave me lots of side effects which were double visions, wobbly walking, memory loss, tiredness and falling asleep in the day. The higher the dose the more side effects increased. This was also extra pressure in my life. Christmas 2012 was worse than the previous Christmas because I was experiencing side effects from my medication, I was extremely slow at eating and I felt embarrassed again.
By March 2013, at my oral surgery consultant appointment, I explained that appointments every 4 months was too long for me as I felt so depressed and helpless because I could see no life aim in the future with this atrocious illness that affected my daily life. I was struggling to eat, was really tense when trying to chew and it was difficult to even drink. I found it difficult to sign, it affected my right ear and I couldn’t wear my hearing aid because of the pressure, I felt all one-sided. I was taking the highest dose of carbamazepine I could tolerate, 1600mg. During this consultation, Professor Loescher overheard me and asked the consultant to explain all the symptoms. She advised a change to Carbamazepine Prolonged Release (PR) which I could then increase the dosage of and Pregabalin. An urgent appointment with Professor Loescher was booked.
Once we met with Professor Loescher and her team they confirmed that I did have Trigeminal Neuralgia (TN), at last it felt like I was being listened to and I had some hope that I might get better. I felt happier because I knew what was wrong. It was not certain why I started with TN and there were a number of possibilities -maybe it could be linked to my deafness but we have not confirmed this.
I still felt worn out as the Carbamazepine PR gave me the same side effects although I could tolerate a higher dose. I was advised the best course of action was for me to have Stereotactic Radiosurgery (Gamma Knife) rather than Microvascular decompression (MVD) and we all agreed with this.
My first Gamma Knife was on 3rd July 2013 and my memory is that I have a metal frame screwed on my forehead and back of my head, had an MRI scan then went to surgery room, lay on the machine bed and the metal frame was attached to the bed to make sure my head didn’t move. It took about 30 minutes and it was quicker than I thought. I had a review in October where I was pleased to say that the pain had reduced slowly. I was still taking the Carbamazepine PR
Christmas 2013, even though I was still experiencing side effects from my medication I was able to eat most of my Christmas dinner with my family and I was not embarrassed. That was the best moment of my life.
In January 2014, at my review appointment they were delighted to hear that I had the best Christmas dinner for a number of years with very little pain. I was advised to try to reduce the Carbamazepine PR by small increments once every 2 – 3 weeks. Clinically there was no evidence of any sensory deficit but it could occur as radiosurgery has effects over a long time. I only needed a 6 month review and at this one I was able to say that the pain was lots better and I had reduced the Carbamazepine PR to where I was not experiencing as many side effects. I was very happy and felt I could move on with my life.
Just before Christmas 2016, the TN pain returned, exactly the same pains that I had in 2011. I had to increase my Carbamazepine PR and again had side effects. I was urgently referred to see Professor Loescher in January 2017 and we all agreed that the Gamma Knife procedure was the best option again. This happened on 1st March. It was explained that there was a possibility that I could have a 70% chance of developing some degree of facial numbness which I do have now. Again, it worked and I was able to reduce the Carbamazepine PR. Unfortunately, I have developed pins-and-needles in my cheek and mouth and sometimes in my nose and eyebrow, also a dry eye and I dribble now too, that can be embarrassing. This isn’t going to go away. This time the review was a year and that made me feel much happier.
In July 2018, I saw Professor Loescher and I was able to say I was still pain free and was well but I still needed to take my Carbamazepine PR. I am still pain free and currently only take Carbamazepine PR 400 mg in the morning, I have put back on my weight and feel much more healthy. I am so pleased.
My life has completed changed because of TN, the pain I had and the medication I need. I want to say how grateful I am to having Professor Loescher and the team to look after me and support me through my treatment.