Radiosurgery Centers of Excellence

Having explored the surgical options and read some horror stories about what the after-effects can be, I am thinking that I should take the lowest risk option - non-invasive radiosurgery - for this acoustic neuroma.

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 :-(

What to do?

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.

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.

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 trigeminal neuralgia (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 TN in my Trigeminal Neuralgia blog.

Back to the neurologist

I got a call from the neurologist's secretary. Instead of going in tomorrow as originally scheduled, he wanted to see me today - urgently. Of course, this could only mean one thing - bad news.

I went straight away. I had to wait in the waiting room whilst the scheduled patients had their turns. Finally, an hour later, I went in. He said that he had called me to come in straight away because the MRI scan was "not normal". He then went through the six or so films showing me a growth in my head - a vestibular schwannoma (otherwise known as an acoustic neuroma).

A vestibular schwannoma is a noncancerous (benign) tumor that develops adjacent to your brain on a portion of the eighth cranial nerve, which runs from your brain to your inner ear and controls balance and hearing. Although it is one of the most common types of brain tumors, these tumors are still rare, occurring in about one person in 100,000. For a good article on vestibular schwannomas see:
http://www.emedicine.com/ent/fulltopic/topic239.htm#section~Workup

The tumour was clearly visible on my films, especially the ones in which the contrast dye had been used. As the neurologist said, it was "shining like a Christmas tree light". He felt that it was this that was causing the trigeminal neuralgia (you can read more about that in my Trigeminal Neuralgia blog.)

His secretary made an appointment for me to see a neurosurgeon in two days time (Friday) so that I could have the diagnosis confirmed and discuss the options.


Here is a story of a young fashion model who, after struggling with one misdiagnosis after another, finally discovers the truth: she has a large acoustic neuroma. The following journey would either save her life or end it in the process.

The MRI scan

Monday - MRI-day!!

My MRI scan was scheduled for 9.00am. I thought I might go on from there into the office as I felt fairly good.

I had originally gone to the neurologist because of the trigeminal neuralgia that I suffer from. It had got really bad over the last few weeks. You can read more about that in my Trigeminal Neuralgia blog.

I was apprehensive about the MRI scan of course. Wasn't sure what to expect. I visualised that I would be almost totally enclosed by the machine. But that wasn't the case. They provide a mirror above you so that you can see out of the scanner into the room, and through the window where the medical staff are. That's good coz it makes you think you have lots of space whereas in reality your head and shoulders are really enclosed in a little area. They provide ear plugs coz of the noise of the scanner.

They did a scan for about 30 minutes, during which time I actually just about went to sleep. The scanner stopped - but they left me lying in the MRI. Then I saw the female medic pointing to the screen and discussing with another male medic. Then they came in and the medic said they wanted to give me an injection of something to make the image of whatever they had found clearer on the scanner. I could hardly hear what they were saying coz of the ear plugs. So then I had another 15 minutes of scanning.

I was hoping that this scan would indicate exactly where the blood vessel was pressing on the trigeminal nerve. I was fairly sure that nothing else would be found. But during the scan, I had a bad feeling about it - the way they pointed at the computer screen and talked animatedly and then came to give me the injection of the contrast dye before doing another scan. I was now certain they had found something. Most likely a tumour.

Strange how when you think of a brain tumour, you immediately think of a cancerous one and immediately think the worst.

I didn't go into the office afterwards. During the afternoon I got more and more depressed. I walked on the beach and asked why this should happen to me now. Just when I had finally found happiness in a wonderful relationship, why should it be snatched away? I realised that I was starting to wallow in self-pity, so I decided to do a web search of the things they might have found.

I guess trying to self-diagnose using the Internet and based on little evidence is not always a good idea. In my case I felt much more positive about my future after I had done my search. It seemed to me that given all my symptoms, if I did have a tumour, then it was likely to be an acoustic neuroma - a benign tumour that causes deafness (which I certainly had in my right ear) and in some cases can cause trigeminal neuralgia (TN) - the original reason for going to the neurologist.