Deciding Between Open Brain Surgery Or Gamma Knife

I'll never forget "the day". February 17, 2012.  I was set up to have Gamma Knife surgery three weeks after my diagnosis and it was all happening so fast. My Neurosurgeon specifically told me not to Google my condition and if my readers know me at all, they know I already did that weeks ago. Today, I realize he was only trying to help me. He didn't want me to get freaked out and end up canceling the surgery. I almost did, because I was honestly, freaked the hell out.

At that time, it was very difficult to find credible information regarding arteriovenous malformations, unless it was some medical journal or study that had so much medical terminology you needed a dictionary to understand it all. There was one very awesome support group, Ben's Friends that I had found. While Ben's Friends focuses on many rare diseases and illnesses, I did find an incredible library of information, support, and guidance from other AVM survivors. They changed their website and my account was never carried over, so I'm no longer a member. But I still support them whole-heartedly and will continue to refer other survivors to that organization.

I had two options, open brain surgery or radiosurgery. Both were equally frightening, to say the least, it was either have my skull opened up or undergo a massive amount of radiation. The radiation would be very a similar recovery as a cancer patient would undergo, while the open brain surgery may cause more deficit, a longer recovery time, but instant results as the AVM would have been removed entirely. With radiosurgery, I was informed I would expect to see results within 5 years of my surgery. It seemed to be a less invasive process for me so that was the option I went with. I was a working mother, supporting two children, and I had just entered into a business with my fiance. I didn't understand at that point in time how much this would affect my life. I thought that just because it was an outpatient process, that I would be back to work in no time, back to my daily cycling routine with my fiance and children, back to being the soccer mom, housewife, and caretaker of my family. But I guess I didn't fully understand yet just how serious this diagnosis was.

My neurosurgeon was very stern during our pre-op appointment. He literally sat directly in front of me on his stool, looking straight into my eyes as he was telling me what to expect from this surgery. He revealed I had an intracranial vascular malformation located on the left occipital-parietal temporal lobe. The occipital lobe is primarily responsible for vision. The temporal lobe processes memories, integrating them with sensations of taste, sound, sight, and touch. Damage to the left parietal lobe includes right-left confusion, difficulty with writing (agraphia) and difficulty with mathematics (acalculia). It can also produce disorders of language (aphasia) and the inability to perceive objects normally (agnosia). Special deficits (primarily to memory and personality) can occur if there is damage to the area between the parietal and temporal lobes. Left parietal-temporal lesions can affect verbal memory and the ability to recall strings of digits. While it didn't for me, it can also result in what is called "Gerstmann's Syndrome." I was also warned that aggravating this part of my brain could cause sexual dysfunction, emotional distress, and risk of seizures.

Today, I am able to write about my surgery, the feelings, the emotions, the fear, the relief of opening my eyes again after the anesthesia wore off. Today, I am able to inspire others with my story. Today, I can be thankful if just one person says, "Hey, me too!" while reading one of the posts, and they are able to still press on in life and keep fighting another day. It is still so difficult to process and look back on. I developed PTSD over the entire ordeal, not saying you will, but I did. I can't look back on the surgery itself without feeling overwhelming anxiety and dread and fear.

The goals of Gamma Knife radiosurgery are to:

1. Precisely locate the target (tumor, lesion)
2. Hold the target still
3. Accurately aim the 192 radiation beams at the target
4. Deliver radiation at the specified dose that conforms to the shape of the tumor

All while you are pinned to the table with a head frame. Ah, yes. Very frightening indeed. All I can remember from the Gamma Knife surgery itself, (I had an  MRI and Angiogram before heading to surgery), is the bright light inside the machine which looked like it was outlined in foil, and it was so bright. I call it the Easy-Bake Oven. Grade-A science experiment.

It was a lot to process. And it has taken all but seven years after the initial surgery to fully understand everything I had endured. Looking back on it all, nothing is the same. If you are reading this while opting for the treatment of an AVM, please, do not be discouraged. PLEASE have the treatment or surgery. Your health should be your main priority. I sometimes find myself saying, "I wish I never had the surgery, I wish I would have opted out" because of all the hardship I have endured. But then again, I know that the other option was death, and ultimately leaving my children alone in this world without a mother. A family without a daughter, sister, aunt or cousin. A husband without his wife. That was not an option for me. And it shouldn't be for you.