- Posted September 9, 2013 by
Trigeminal Neuralgia - My Story
- zdan, CNN iReport producer
I have always suffered with headaches and migraines for as long as I can remember, it was nothing new to me to wake up in the morning with pain. But one morning in early Summer 2007 it was different. I woke up thinking that someone was stabbing me in my right temple with the pain spreading down to my cheek, like a knitting needle being pushed in and out. I’d never felt anything like it, and this went on for three weeks. I went to see my General Practitioner, who said it was atypical facial pain, but that it was too early do any investigations. The pain subsided for a few weeks, and then returned, now with a horrendous burning pain above my right eye and travelling down to my cheek. I also started getting electric-shock like pains, which were so intense I couldn’t breathe or even cry out in pain. A kiss on the cheek could feel like a bolt of lightning. Something was desperately wrong.
I returned to my GP, who readily referred me to a Neurologist, however the waiting list was so long I had to wait nine months to be seen. I explained my symptoms, the intensity of the pain was so excruciating that I could barely function. The pains seemed to travel down all the nerves in my body, making my right leg jerk and kick out. The Neurologist told me, ‘it seems highly likely there is something pressing on a nerve in your head, and we need to find out what it is’. He sent me for an urgent MRI scan, which I had two weeks later. When I returned to see the Neurologist, he told me the scan had shown a blood vessel pressing on my trigeminal nerve, and that I had a condition called Trigeminal Neuralgia. I was put on medication to help with the pain. I persevered with the pain for a couple of years, until I just couldn’t take any more.
I was then referred to a Consultant Neurosurgeon, who explained the different treatments available, including other anticonvulsant medications which come with various side effects. I told him the pain was already affecting my work and social life, I needed to be able to drive and work, I was afraid of losing my home. I wanted to be able to spend quality time with my husband and daughter, not having to be confined to bed in agonising pain. The Neurosurgeon told me that as they could see where the blood vessel was pressing on the nerve, they could perform a Microvascular Decompression (MVD), brain surgery, where a teflon sponge is placed between the blood vessel and the nerve to relieve the pain. After being told of the risks involved, I agreed to surgery.
I was petrified on the morning of the surgery in July 2011, but also elated at the thought of possibly being pain free. I was told the surgery went well, but vomited a lot for the week that I was in hospital. I was then sent home to recover. A week after the surgery, and after having the stitches taken out, I developed a headache. The headache grew more intense as the day wore on, until I started shivering and feeling incredibly sick. My husband phoned for an ambulance and I was whisked back to hospital where my family was told that I had Meningitis and was critically ill. I was immediately put on strong antibiotics, pain relief and a lumbar drain was placed in my spine to drain the brain and spinal fluid for 11 days. Brain fluid oozed out of my scar and soaked my hair. I fell in and out of consciousness, with fleeting glimpses of my family’s faces. I could feel my dad and my husband holding my hand at times but couldn’t communicate. I really thought I was going to die and had to fight to survive. I was very ill for three weeks.
After returning home, a week later I was taken back into hospital with a severe headache whenever I tried to sit up. I was told I now had hydrocephalus. Another lumbar drain was performed, however this time I was told it had been unsuccessful, and that the needle had cut off a piece of the tube which had been left inside my spine. They said it was too dangerous to operate and take this out.
A week after returning home, I developed a leak through my right nostril. It was another brain fluid leak. I was driven back to the hospital and was told they would need to operate that day to close the hole under my skull, and quickly before I developed Meningitis again. They went in through the original scar and used the fat from my thigh to help seal up the hole under my skull. I didn’t wake up for two days and when I did had constant hallucinations. I felt I was becoming weaker.
I returned home, determined to put all my strength into getting better. But when I awoke one morning with a terrible headache, I tried to sit up but passed out. Whilst waiting for the ambulance to arrive I vomited and became incontinent. I was rushed in to hospital with an ambulance and Police escort. I have no recollection of what happened after I passed out, my body had shut down. They gave me antibiotics through my jugular vein. I woke up once more in hospital with an oxygen mask and tubes. The left side of my head now hurt, as well as my neck and stomach. They had to put a VP shunt into the left ventricle of my brain with a tube tunnelled down my neck and into my abdomen. The brain fluid then travels down the tube and into my abdominal cavity. The Meningitis had damaged my brain tissue. The shunt is permanent, and I now worry about the possibility of shunt blocks which are common and could mean changing the shunt. I have already had two admissions with suspected shunt blocks – I now need to carry an Alert Card as I have to get to hospital within four hours.
The pain relief I had from the surgery unfortunately only lasted for 18 months. I had flashbacks for eight and a half months, constantly reliving the ordeal, every time I closed my eyes I felt I was back in hospital. I spent 64 days altogether in hospital, having 5 lumbar punctures and 3 lumbar drains. Sadly the pain has now returned and is also starting to affect my left side. This disease is aptly called ‘The Suicide Disease’ , it has drastically changed my life and millions of others who suffer from it, emotionally, physically and mentally. I do gain comfort and support from online groups but I hope that one day Doctors can find a permanent cure for this excruciating disease.