Hi guys!
I was missing this forum..
So, I'm now at the USA, California to be precisely, to treat my remaining AVM with CyberKnife treatment.. I'm Leonardo, from Brazil.
Long story short, I discovered my AVM when I had a seizure in 09/12/2010.. I'll never forget the date: it was my mom's birthday, it was night and we were alone at the house.. well, after the seizure, which caused a very big 4cm cubic bleed, I did a few exams until they realized it was an AVM.. so I did craniotomy just 3 days after the seizure, recovered at the hospital and later at home and, so far the exams were showing, my AVM was gone for good..
That until the beginning of 2013, when I had a very strong headaches again (the kind of AVM headaches) and I did a new MRI, which stated there was a remaining AVM, just a 10mm size, but in a very deep part of my right brain.
My neurosurgeon suggested me to treat with radiosurgery, precisely Gamma Knife, which was a 'new procedure' in Brazil.
Searching for radiosurgery treatments, I found out CyberKnife, which showed up as an even better treatment then GK. So searching even more for good doctors who do CK, I found out a lot of good doctors in California.
So I tried to reach out for 2 or 3 of them and the one who gave me the most attention of all was Dr. Patrick Linson, from Cyberknife Center of Southern California. I spoke with Katie on the phone and she was very very helpful explaining everything I had doubt of and giving me a tremendous attention.
So, due to this and Dr. Linson extensious curriculum and good reviews, I decided to trust my issue to him.
So here I traveled to now.. I'm at San Marcos, just a town next to Vista (where is the CyberKnife Center), waiting for my treatment day to come.
I had an appointment with Dr Linson on Tuesday, in which he explained me everything I wanted to know (there's always more we do want to know, but at the time we forget lol.. I'll ask him next week).
So.. on Thursday I did the CK mask, which is fine, just a little bit unconfortable to do it but the lady said that 'using it is a bit larger than when we do it'. Also, I did the CT scan together with the mask, which was very fast to do.
On Friday, I did 3 exams: MRI, MRA and a CTA scans. These scans I will show to a neurosurgeon doctor next Tuesday, who Dr. Linson thought would be a good idea to hear his opinion about my case.
My case is a 10mm remaining AVM (actually, that was the size in March 2013, I don't know how big is it now, or even if it grows.. does it?). The problem is that is in the right side of the brain, but next to the left body side movement area. So a new craniotomy here is out of chance, due to the risk of being unable to move left body side.
I do have headaches daily, every day.. it's like my brain is suffering a lot of pressure.. I hope this pain goes away, even if after a year or 2..
Anyway.. I heard a lot of stories here so I thought would be a good idea to share mine too. I'm not nervous about what is about to come.. I'm kinda anxious though.. We're never 100% sure of what's about to happen right..
Wish me good luck folks.. thanks a lot for this space and sharing your experiences, I learned a lot from reading other stories here..
Thank you all !! ;-)
PS.: the doctor said CK treatment will make the AVM disappear after 2 or 3 years.. does anyone know how the after surgery 'maintenance' is? I mean, do you have to do MRI every 6 months to see if the AVM is size decreasing? I forgot to ask him that..