My AVM is located deep within my brain near the brain stem. My Neurosurgeon has advised me that Gammaknife and similar treatments would be very risky due to the AVM location. So far, I have opted out of treatment due to this risk. For now, I live with the chance of rebleed (stats show 4% chance of rebleed with a 10% chance of it being fatal). Does anyone else out there have a similar situation, and can anyone share their story? Thanks
My AVM is also in the brain stem area (Age 50). I did not have any bleed. So, had two embolizations (07/2009) and cyberknife (12/2009). As I understand, the treatment plan depends a lot on individual conditions. Docs evaluate risks of surgery against risks of bleed!
Hi Edward,
Have you had a second opinion? If not I would highly recommend it. No offence to your Neurosurgeon but I have had 4 opinions and 3 different answers. I’m impressed with DR Apuzzo knowledge with SRS however time will tell. Good luck
Thank you for your response and input. Still weighing the options
Manny Patel said:
My AVM is also in the brain stem area (Age 50). I did not have any bleed. So, had two embolizations (07/2009) and cyberknife (12/2009). As I understand, the treatment plan depends a lot on individual conditions. Docs evaluate risks of surgery against risks of bleed!
Thanks for your input. Still weighing my options
Manny Patel said:
My AVM is also in the brain stem area (Age 50). I did not have any bleed. So, had two embolizations (07/2009) and cyberknife (12/2009). As I understand, the treatment plan depends a lot on individual conditions. Docs evaluate risks of surgery against risks of bleed!
My AVM is also deep (they told me it is almost exactly in the center of my head), but I was able to have gamma knife. I received opinions from four doctors and I did have one doctor who recommended not doing anything. I would seek out other opinions, but if they still say you should avoid treatment, I would recommend doing what I do for now - try not to focus on the stats, try to appreciate the life you’re living now, and when you’re having a difficult day (as I am now), come here for support.
Rebecca, thank you for your input. Did you have any side effects from the gamma knife treatments? I hope that today is a better day for you. Thanks again for your support!
Rebecca Watson said:
My AVM is also deep (they told me it is almost exactly in the center of my head), but I was able to have gamma knife. I received opinions from four doctors and I did have one doctor who recommended not doing anything. I would seek out other opinions, but if they still say you should avoid treatment, I would recommend doing what I do for now - try not to focus on the stats, try to appreciate the life you’re living now, and when you’re having a difficult day (as I am now), come here for support.
My AVM is in the brain stem. I’m from Las Vegas. I was thinking of undergoing the gamma knife radiation, but every neurologist told me it was too risky. So, I dint give up and contacted Stanford, where I had cyber knife radiation done. I’m experiencing severe side effects, but they say it’s a good thing. Don’t give up, keep looking. Nothing is impossible!!
Thank you for sharing your experience. It has been 2 1/2 years since my bleed, and still not many side effects. I am still going with no treatment for now and trying to get my life back on track. I know that it's risky, but I try not to think about it and emjoy life. Good luck to you.
My AVM I also located in the bottom of the brain s
Stem and to have seen several neurologist they
All agreed due to the location I have a high risk
Of being paralyzed so I oped not too do it. So far
It’s been 8 years the only symptoms is left hand
Numb. I have been fine until here recently
Have had some stiffness in the neck. Good
Luck to you. Keep in touch of you get an
Option for this.
Good luck to you. Keep in touch.