When I read your email it was almost like reading my own story.....
Firsty I will be open, honest and blunt and tell you exactly what happens and my own story.
Like you I am a VERY active person, MMA, running, triathlons, spinning and weight training...Like you I was fit, well and athletic and led a very healthily life.
Then in Sept 2010 my world imploded, My AVM was found when I had a seizure whilst training in Sep 2010, I had never had a seizure before this was my first one.
Mr Eldridge performed a Brain Angiogram, which determined that I had a Left Temporal Lobe AVM, he asked if I would take part in a clinical trail called the ‘ARUBA’ trail, but stressed that he would take away the ‘lottery’ of which treatment I would be given as he strongly felt that Stereotactic Radio surgery was the best option for me.
I had my Stereotactic Radio surgery via a cage drilled into my head in April 2011, it was hideous, BUT you have to understand that it will hopefully eventually obliterate the AVM over the next 2-3 yrs.
Since the Stereotactic Radio surgery, I have had 5 more seizures, one 3 weeks after my Stereotactic Radio surgery which was a ‘Grand Mal’ which landed me in Walton for 12 days.
I cannot say either way if the seizures would still of happened with or without Stereotactic Radio surgery, all I do now is that since the Stereotactic Radio surgery I have had many more.
Now.... here’s the kicker.... ALL my seizures have happened either during or right after exercise...... which gives me almost a definite diagnoses that it’s Pressure of blood to the AVM causing the seizures, I have reduced my intensity and now wear a heart monitor to keep an eye on how hard my body is working... trying to maintain between 130 & 150bpm.
I am absolutely frightened to death of having a stroke or haemorrhage, but where do you draw the line , cave in and sit at home doing nothing and let this beast screw up your life ??
Last November I gave in, and took Mr Endovalsan (Epileptic consultant) advise and started the ‘’Anti Convulsant’’ medication called ‘Lamotrogine’, I am on 150mg a day which is a low daose and have only had one ‘blip’ since starting them, again directly after a spinning class.
I honestly cant say for sure whether the Stereotactic Radio surgery has helped me, but LONG TERM it will eradicate the AVM .. No AVM = No Seizures.....
The worst thing is loss of driving licence, you have to go seizure free for 1yr before you can get it back, I left mine to the absolute last resort before informing the DVLA.... but I had to do it.
Please do not hesitate to contact me at all – 07940 511056