Within a few months I had an appointment to see Dr Rose a neurologist at my local hospital. He reviewed all of my x-rays and MRI of my jaw joints and said he would like to conduct another MRI on the area where my trigeminal nerve starts and the top half of the brain. He thought I may have trigeminal neuralgia and that the pain was a result of over activeness in the base of the nerve. He also told me it may be linked to some sort of tumour putting pressure on the nerves that control my face. What a nice thing to tell a 22 year old girl who is on the edge of breaking point. I tried not to be too alarmed but his comments and thought that if this was the case I would be able to fight it heads on. Sophie’s dad had recently been diagnosed with cancer of the cheek pocket and was starting treatment for that. I looked at his bravery and knew that I must keep it together until after I got the results.
So I was booked in for another MRI scan. My last MRI scan was 45 minutes and consisted of no music and loud vibrating noises. I had a feeling this one would be as bad. The hospitals say you can bring a cd with you to the scan and listen to that while you have to lie completely still for a long period of time. But both times I had MRI scans the staff did not offer music or ask if I had a cd to listen to.
So here is a rough outline of what to expect when you have an MRI scan. You will normally be asked to wear a hospital gown and take off all jewellery and items of clothing that may have metal on them (depending on where you are having the scan). You then walk into the scan room, which is dark with the person conducting your scan. You lay on a long and narrow bed and are fastened into place so your head cannot move very easily. You are fitted with ear defenders or headphones and then you are moved slowly into the tunnel. On both occasions I tried to tuck my shoulders in because I was not sure if I was going to fit into the small space. To stop you feeling claustrophobic and so you can see the person in the control room, there is a mirror above your head so you can see your feet and the control window. That’s it, then you have to lay completely still listening to your music or the drowning sounds of MRI scanner. In my scans, I was told I could not speak or move my mouth unless instructed to. So all communication with the technologist is through hand gestures… thumbs up or thumbs down. On my second MRI scan I was in the tunnel for over an hour. To make matters worse someone had sneezed on the mirror above my head. The site of someone’s boogies and snot will haunt me forever. In hindsight, I should have complained before the scan had commenced. But I did not want to be in there any longer than I needed to be and knew this would postpone the start of the scan. The NHS really do need to improve on their levels of hygiene. No wonder we have MRSA everywhere.
So with the trauma of human secretion over and done with, I waited for my results. 2 weeks later I went back to see my neurologist. He explained that the MRI had not shown any significant findings but still took it upon himself to diagnose me with Atypical Trigeminal Neuralgia. Also titled the suicide disease. This form of neuralgia is rare and is difficult to diagnose as the symptoms can overlap with other disorders.
Some of the symptoms of Atypical Trigeminal Neuralgia:
- Heavy, aching, stabbing and burning facial pain
- Pain is continuous and periods of remission are rare
- Consistent migraine like headaches
- Intense pain over one or all of the three trigeminal branches
- Pain in the teeth, ears, sinuses, cheeks, forehead, upper and lower jaws
- Pain in the scalp and/or behind the eyes
- Pain made worse by the cold, talking, chewing or smiling
Without any solid proof, Dr Rose sent me on my way with a prescription for Gabapentin and informed me he would be writing to the pain management clinic to advise them on my continued treatment. Gabapentin was initially developed for the treatment of epilepsy and is now currently used to treat neuropathic pain. Gabapentin like most strong drugs has numerous side effects. Some of these side effects include; dizziness, fatigue, weight gain, drowsiness and swelling of extremities. Dr Rose explained that I would need to continue to increase my dosage to ensure that the drug kept working. He also proposed that if my symptoms continued, I could discuss options of surgery to kill off parts of my trigeminal nerve that were causing me pain. Seriously, are these people evil scientists on crack? This is barbaric, wrong and completely unethical. I am so glad I had my mum with me at this time. She told me straight, no matter how bad the pain was, I was not taking those pills and I was most certainly not having any surgery to burn off or kill my nerves. I was desperate and not thinking straight and if I was alone I may have proceeded to look at surgery to resolve my pain issues. I am so thankful I did not because this again was another incorrect diagnosis.