Monday, 20 April 2015

Some Scary Decisions Ahead.

This morning I had an appointment with a Radiologist in the Oncology Unit in Beaumont Hospital. It didn't go as planned though, and I am left confused and depressed. 

As I have Atypical Trigeminal Neuralgia, I am very difficult to treat. I have a constant burning pain down the left side of my face, stabbing pain in my ear and jaw with electric shocks joining in. This is going on 2 years now and I am losing hope. This morning I went to my appointment and the treatment initially offered is called Stereotactic Radiosurgery My Neurosurgeon told me that the chances of success is between 20&30% and there are some side effects. 

It turns out that there is a whole lot more to this than I thought. The procedure involves a huge dose of radiation focused on one piece of the fifth cranial nerve. This happens to be close to my brain stem which worries me. Apart from a low success rate, I could be left with numbness down the left side of my face, my face dropping, vision problems, the left side of my body could be numb or there could be severe muscle weakness. As there would be an enormous amount of radiation focused on the nerve, it could cause cancerous tumours in the brain in the future. 

I will admit that I am scared. Although the chances of these side effects are low, it is a possibility!

For the chance of a low pain future, is it worth putting myself at risk? What if I end up suffering paralysis? How will I cope and what will my quality of life be? What if I end up numb? I was told that it could effect my left eye and I could get an ulcer there. If something goes wrong, what will I do? 

I have faith in my doctors, I really think they are excellent, but they are mere men. They are not magicians or miracle workers and they have their limits. 

I really don't think that I can go through with it, although the doctors have to have another meeting to discuss my case. They may decide that it's too risky, or that as my symptoms are so atypical there is little point taking a risk. 

I am seriously confused, and I am sad. I was full of hope, dreaming of a procedure that could remove a little of this monstrous, beastly and constant pain. 


  1. I have atypical trigeminal neuralgia too. I have been suffering for over three years and am finally able to see a neurologist. I'm 26 years old and suffering daily. People see me and I look fine, but I can barely make it off the couch most days. I have never met anyone else with this condition so I've been searching the web to find others like me. I'm so sorry you have this too. I wouldn't wish it on anyone. I hope we can both find some answers and a cure. I'd love to talk more and I'm interested in reading more on your blog. God bless you!

  2. Multiple options are available for the Trigeminal Neuralgia Treatment. Medical treatment includes anticonvulsants such as carbamazipine, oxacarbazepine, clonazepam and gabapentin and antispasmodic agents such as baclofen. These drugs can be given alone or might be given in combination with each other however if medications fails to treat the condition or produce side effects such as fatigue then surgical treatment is recommended the procedures include microvascular decompression in which blood vessels causing problem are relocated or removed and gamma knife radiosurgery in which a focused dose of radiation is used to destroy trigeminal nerve all together at its root.

    1. Lamictal 200mg 3 times a day has helped me some.