I will be undergoing MVD on 12 December for TN.
How I came to this decision is a long story, but I’ll try and provide you with a summary of the main events that led up to my decision to undergo such an invasive procedure.
Let me introduce myself first: I am 41, married, with four children, aged 19, 17, 11 and 9 (girl-boy-boy-girl). All of my children have health issues: congential heart disease, eating disorder, allergies, ADD, anxiety…
We are originally from Belgium, but migrated to Australia in 2008 after a four-year stint of doing linguistic fieldwork in New Caledonia.
I am a PhD Candidate in International Studies and Tutor at Macquarie University in Sydney. Due to the progressive character of the condition, however, I had to stop teaching and continue working on my thesis from home. One more year and I will be able to put ‘Dr.’ in front of my name.
Now let’s go back to where it all started.
I was only 10 years old when I felt stabbing pain underneath my left eye. It would come and go. Our family GP diagnosed me with sinusitis and prescribed antibiotics. It didn’t work. Throughout the years, I also suffered from bad toothaches and became a regular visitor of dental clinics. This would continue for the rest of my life. I have more fillings than anyone else in my family. When I was 15, another GP diagnosed me with migraines and prescribed painkillers. It didn’t work either and the ‘migraines’ got worse, more frequent and more debilitating as I got older. However, they became part of my life and I got used to them, treating them with strong painkillers that didn’t do much at all, until, many years later, I had a really bad attack in 2008.
It was a huge flare-up that completely knocked me out. The pain was so horrific that my husband decided to bring me straight to Emergency, where I finally had my first neurological examination. Everything was fine. I received medication and painkillers through an IV and was sent home the same day. The flare-up lasted for six weeks. It came and went. Waves of excruciating pain in my face. At this point, we had decided to leave our field work in New Caledonia behind and had returned to Australia with our four children because I could no longer cope.
My husband finished his Master’s degree in Melbourne and found a job in Darwin, so we moved to the Top End. The heat and humidity proved to be disastrous to my facial pain. Yet, I went back to uni as an external student and finished my bachelor’s degree. The attacks continued. My husband saw my plight and, after two years, he gave in and we moved to Sydney.
This is where I consulted my first neurologist. She diagnosed me with chronic migraine, put me on a preventative and prescribed naratriptans. It didn’t work. She tried many different preventatives and sumatriptans. No success. Only subcutaneous sumatriptan injections would provide me with some relief. My neurologist was puzzled by my condition and thought I might have cluster headaches. I had a series of Botox injections that didn’t do anything either. My neck started swelling up and it was discovered that I had tumours on my thyroid, so I underwent a total thyroidectomy. I was declared cancer free afterwards, happily finished my Master’s degree, enrolled in a PhD and started teaching.
But then… I started experiencing more frequent ‘headaches’ that started underneath my left eye, as well as stabbing pain in my left ear. Again, I ended up in Emergency. This time, I was hospitalised. Three different neurologist spent 10 days trying to figure out what was wrong with me. One thought I had ‘migraine with trigeminal features’. Another thought I had ‘overactive ions in my brain’ and the third one claimed I had ‘bone inflammation’. This last one discharged me from the hospital and referred me to a dental surgeon.
I never went to see the dental surgeon. Instead, I decided to consult my dentist because, at this stage, April 2016, I had felt the first few zaps in my teeth and was getting scared. The pain had become unbearable. It was sharp as lightning and was caused by simple acts, such as brushing my teeth, chewing my food, washing my face or my hair, sitting in a car, etc. The dentist reassured me there was nothing wrong with my teeth and referred me to a good old friend of hers: an orofacial specialist at a pain clinic in Sydney. He diagnosed me with ‘trigeminal autonomic cephalgia’ and then modified this to ‘chronic cluster headaches’. At the pain clinic, I was then treated by a psychologist and a psychiatrist. I lost 12 kilos in only 6 months’ time because it was too painful for me to chew my food. I was now living on smoothies and baby food and had become underweight.
Meanwhile, I had been doing my own research. I was slowly becoming convinced of the fact that I was suffering from a rare neurological disorder called ‘trigeminal neuralgia’ and, thanks to unlimited access to the university library database, I also knew the disease was commonly caused by compressions on the trigeminal nerve. Armed with this information, I went back to my neurologist. She agreed with me and ordered a detailed MRI scan. It came back clear. The radiologist had not found any compressions or a vascular loop near the brain stem. I was totally devastated. My neurologist tried to comfort me and prescribed more medication for the pain.
I had a lot of problems with the anticonvulsants. That alone is a whole story in itself. Lyrica was the worst. It made me feel heavily sedated and getting off it was pure hell. Of course, I was also prescribed Carbamazepine, the golden standard of TN treatment. Unfortunately, my sodium serum levels plummeted after only one week on the medication, I was rushed to hospital and told to stop taking the medication. Gabapentin was next. It gave me a rash. I was put on Topamax, with no benefit whatsoever and a whole range of nasty side effects. My psychiatrist decided to add some Effexor to the anticonvulsant, much to the dismay of my neurologist. At his particular moment, about two weeks before my surgery, I am on Topamax 200mg/day, Effexor 75mg/day and Lamotrigine 200mg/day. My TN has been officially labelled ‘refractory to medication’. In other words: I am still in a lot of pain.
I could not cope with the thought I had to spend the rest of my life with this horrible pain, so I demanded a second opinion. I asked my neurologist to refer me to a neurosurgeon. She agreed because I looked like a total mess. It only took the neurosurgeon five minutes to spot two vascular compressions on my trigeminal nerve, in an area called the posterior fossa. He immediately suggested MVD and asked me when it would suit me best to undergo the procedure. I thought I was dreaming.
Here I am, 31 years later, waiting for surgery, with an 80% chance of becoming completely pain free…
Thanks for reading my story and if you are suffering from TN too, hang in there. Don’t give up. There is always hope.
Take care.