Radiosurgery Centers of Excellence

Having explored the surgical options, I am contemplating whether I should take the lowest risk option - non-invasive radiosurgery - for this TN, when it comes time for that.

In my web research I came across this really useful guide to radiosurgery - a website by the "International RadioSurgery Association" - an independent organization, has dedicated itself to providing educational information and guidelines on stereotactic radiosurgery for brain tumours and brain disorders to governments, regulatory agencies, insurers and referring physicians.

One of the really useful resources they provide is a guide to Centers of Excellence around the world - wished I'd found it earlier :-(

Lists of a few things

I think all TN sufferers learn what to do and what not do in order to avoid getting an attack or to alleviate an attack. We learn this more by personal experience than hard science. And some of the things we try work some of the time, but not all of the time. None the less, we try them anyway - when we get an attack, we run through our complete repertoire of alleviation strategies like conditioned rats, 'coz anything is better than that demonic pain.

The following are not exhaustive lists, but just a few of the things I have tried:

Things I have found helpful to prevent an attack

Besides the usual medications, I have found the following to be helpful, especially in the early stages of the disease:

• Monotonous exercise, e.g., walking on a treadmill, cycling on a stationary bicycle;
• Leaning on my opposite elbow to the side which has the pain;
• Relaxing in a bar;
• Avoiding carrying heavy items with the hand on the same side as the pain;

Triggers causing an attack

The following have been triggers at various times during my TN:

• Tip of the nose;
• Top lip;
• Teeth;
• Tongue/inside of mouth;
• Talking/eating/drinking (connected with previous triggers);
• Rubbing my nose;
• Drying my face/head with a towel;
• Carrying heavy items with the hand on the same side as the pain;
• Breathing through my nose.

Things I have found helpful during an attack

I have found the following to be helpful during an attack, especially in the early stages of the disease:

• Immediately stopping whatever I am doing;
• Dropping whatever I have in my hands;
• Staying perfectly still;
• Not breathing;
• Trying to relax, making sure that I am not clenching my teeth in tension;
• Pressing with my finger at the base of my skull above the nape of my kneck on the same side as the pain, whilst simultaneously tipping my head backwards.

Emotional Freedom Techniques

I've been reading about "Emotional Freedom Techniques" (EFT) - an emotional version of acupuncture except needles aren't necessary. Instead, you stimulate well established energy meridian points on your body by tapping on them with your fingertips.

According to EFT:

"The cause of all negative emotions is a disruption in the body's energy system."

And because our physical pains and diseases are so obviously connected with our emotions:

"Our unresolved negative emotions are major contributors to most physical pains and diseases."

I am sceptical of some the claims, but the last statement about "unresolved negative emotions" rang true.


Here's a video about EFT:

Feeling good

I think the higher dose (1200 mgs per day) of tegretol has finally clicked in. I feel pretty good today. Just a few twinges but no big spasms. Of course, I am avoiding rubbing my face (e.g., when drying myself after a shower - that reminds me - did I have a shower today?) 'coz I know that will cause a spasm. But the important thing is that I am not getting any spontaneous spasms. And at last - I can eat and drink. Still don't know if I can talk - haven't tried that - still living like a recluse.

I am noticing some things which might be side-effects of the high dose of tegretol.

• Bad memory - just now I couldn't remember whether or not I had taken a shower. Don't laugh - this is serious. I had to go and feel my face cloth to check if it was wet. It was, therefore I must have taken a shower.
• Drowsiness - yesterday I just had to go to sleep in the middle of the afternoon - I was so drowsy. Today I had great difficulty getting up - about three hours after the normal time I get up.
• Joint pains - I have a neck pain that I think is totally unrelated to the TN. It feels like a stiff neck - as if one has been sitting in a draft. Also, the arthritis in my left knee seems worse.
• Spelling - my typing on the computer keyboard is all over the place - keep hitting the wrong keys.

But I don't really care about any of these. Anything is preferable to that demonic pain.


However, I still have to determine what to do as regards operating on the tumour. Here's a possibility - a positive story about a revolutionary alternative to traditional open-brain surgery and/or daily radiation treatments. The new Leksell Gamma Knife Perfexion™ instead uses focused doses of radiation without making a single incision to treat malignant and benign brain tumors and other brain disorders.

You can read more about my fight with an acoustic neuroma in my About Acoustic Neuromas blog.

The visit to the neurosurgeon

Had an interesting session with the neurosurgeon today. In his opinion, it is unlikely that the tumour is causing the TN as it is only 3cms whereas they are usually 4cms before they interfere with the trigeminal nerve. He feels that it is more likely compression of the nerve by a blood vessel that is causing the TN. So I now have two things to be dealt with.

About 1 person in 100,000 gets an acoustic neuroma. And about 1 person in 100,000 gets TN. So what are the odds of someone getting both?

I need to have the acoustic neuroma operated on at the same time that they do a microvascular decompression - making for a very long and complex operation - if it is all done surgically.

So now I have to find out about all the possibilities for the two operations - Gamma Knife, endoscopic microvascular decompression, etc. Need to weigh up the risks and the benefits of each procedure.

Interesting the cards that life deals us eh? And how things can change so dramatically in the space of one week.

You can read more about my fight with an acoustic neuroma in my About Acoustic Neuromas blog.