Hi everyone,
My name is Sandra and Im new to this support group. Iv never done anything like this before, I’m hoping that with the support of this group, my journey this time around won’t be as difficult.
Here is my story…
In October of 2004 I was diagnosed with a 3.5cm Brain AVM located in my left lobe. Ever since I was a child I suffered from migraine headaches but never paid much attention to them. It was not until I was 28 where my headaches became more intense that my primary care physician decided to order a CT scan and that’s when my AVM was discovered.
I was instantly referred to a Neurosurgeon for follow up test and treatment options. They quickly determined that it was too risky to surgically remove my AVM because of where it was located. They said I would run the risk of losing some or all of my vision. They decided the best form of treatment would be Gamma-Knife Radiosurgery. I was completely terrified. At that that time I found it so hard to find any information about my condition let alone a support group like this. Luckily I was newly engaged and had a wonderful family who love and supported me. But we were all so lost. I spent so much time on the internet trying to find any and everything about AVM’s which only made me more terrified.
Anyway I just left it in Gods and my Dr.’s hands and proceeded with the Radiosurgery in December of 2004. The procedure it’s itself was not bad but that night when I got home I experienced my first seizure ever. I was rushed back to the hospital where I was instantly placed on anti seizure medications.
After my procedure the headaches continued and I was having horrible side effects from the seizure meds. But to make it even more difficult was that I was starting to have difficulties with the neurosurgeon that treated me. Pretty much after one follow up appointment proceeding the Radiosurgery, it was virtually impossible to get any more appointments with him. They were either getting cancelled or pushed back for moths at a time. I was still suffering from strong headaches and complications with my meds and I didn’t know who to go to. I decided to go back to my primary care physician for help. He then referred me to an incredible Neurologist who took over my case and committed to providing all of my follow up care. He was patient, kind, and more importantly he listened.
Within the year after my procedure the headaches began to diminish. I was also slowly taken off the seizure meds since I did not have a history of seizures outside of that one incident the night of the Radiosurgery.
As every year passed things seem to be going well. I had yearly CT’s and MRI’s to track my progress all the way up until 2007 when we heard the most incredible news in the world. “IT’S GONE” My yearly MRI came out clear with no sign of an AVM; they even did an Angiogram to confirm it. I truly felt like one of the luckiest people in the world. I’ll never forget the day, my husband and I ran out the Dr.’s office screaming at the top of our lungs, IT’s Gone! IT’s gone! The nightmare is over; we called all our family and celebrated. Outside of my wedding day it was truly one of the happiest days of my life!
Between 2007-2009 things couldn’t have been better, I had a clean bill of health, I wasn’t on any medications and completely headache free for the first time in my life! In my over excitement I was also very naive. My neurologist continued to schedule yearly follow-ups for me but I would just skip them, in my mind I was cured. Everything I read, everything the Dr.’s told me was once the AVM is gone, it’s gone for good so as far as I knew that part of my life was over, so I thought.
Towards the end of 2009 going into 2010 I started to experience some odd symptoms. Every time my blood pressure would go up weather it was from exercising, caffeine, stress or just basic straining I would start to get an instant strobe light flashing image in my right eye. Sometimes it was followed up by a mild headache but most of the time it was just some mild visual distortion. Again I didn’t pay much mind to it as I felt that this just might be some after effects of my radiation and it would go away in time, also because the pain was very minimal.
But as the months continued it did not go away and at times the symptoms became more intense. I decided to make my first follow up appointment in 2 years with my Neurologist, just to make sure everything was ok. He ordered another MRI and I was given the results this week Dec. 6 2010. The Dr. walks into the office, nothing could have prepared me for what he told me. Its back he says, it was like a knife through my heart. He proceeded to show me the MRI on monitor and sure enough clear as day a 11.55mm x 17.51mm sized AVM was sitting there staring back at me. I felt like I was in a horrible dream I couldn’t wake up from. After all these years….I just can’t believe it!
At this point, I just don’t know what to do, I feel so defeated. My Dr. is planning to run some more test and scans. He says there may be a small chance that that the mass on my MRI could be scar tissue from my previous treatment but he doesn’t think that’s the case.
He instantly started talking to me about doing a second shot of radiation and also considering using an experimental drug called Bevacizumab also known as Avastin. Right now this drug is only FDA approved for treatment of Cancer patients but he says that they are testing it on AVM patients and have seen some success. It’s a very aggressive drug that needs to be taken via IV for a period of months. I can’t find anything online about this drug and the use of it on AVM patients. If anyone knows anything about this or have used it as treatment for AVM’s please let me know!!!
I go back to the Dr.’s on Jan 14th for the results of the additional test and also to decide on treatments. Any information or advice would be so extremely appreciated.
Thank You all for taking the time to read my story…