Tough Choices

The choice between death and brain torture…

Sarah’s condition is known as AVM (Arteriovenous Malformation). Here, blood in the brain is pumped from strong walled vessels directly into weak walled veins, without going through the capillaries. This malformation is like a ticking time bomb. The weak walls of veins can burst at any time, causing a brain hemorrhage. Sarah had a brain hemorrhage at age 12. That’s how we discovered her AVM condition. Since her AVM is deep in the brain, surgery was out of the question. Gamma knife surgery was the only option available. Applying Gamma radiation to this malformed area causes the walls to swell shut slowly, over 3-5 years after each session. This was done multiple times, and this slow non-surgical process of obliteration has the benefit of minimizing the chance of a stroke.

By December 2017, Sarah had undergone 4 Gamma knife surgeries. After each of these treatment sessions, and for a period of 3-5 years, Sarah required an annual MRI with dye to determine the progress of AVM obliteration. At the end of Gamma radiation effectiveness (3 years), Sarah must get a brain angiogram to determine if another Gamma knife surgery is necessary. During the angiogram, the attending physician injects dye in one side of the treated area, and checks if blood and dye is detected on the other side. If no dye shows on the other side, obliteration is complete.

That being said, in 2017, the angiogram showed a small remaining area that required another Gamma radiation treatment. The attending neurologist expressed concerns about having yet another Gamma knife surgery. After all, Sarah had started to regain some of her brain power, and was about to propose for her dissertation. However, the neurosurgeon warned of the wait, as each year, the chances of hemorrhage increase in a compound fashion. This basically translates to either taking a chance on another hemorrhage, with consequences of death, paralysis, or brain damage, or to go with a fifth Gamma radiation and risk further brain injury as a reaction to Gamma radiation. This includes more seizures, or brain rewiring consequences.

How do you make such a decision?

The initial hemorrhage left Sarah with vision deficiencies in the right superior (upper right), word retrieval issues (memory), emotional issues, etc. The previous Gamma radiation sessions caused a host of issues, from the biological brain reaction of the Gamma radiation to the consequential rewiring in the brain. This rewiring included left to right brain rewiring, math and science issues, seizures, etc. To make matters worse, we were confronted with a 3 month insurance fight regarding the Gamma radiation procedure, which was ultimately approved. We felt that having Sarah alive and with enough brain power to manage her life was the better choice. Surgery was completed December 2017 with no immediate issues, but what happened next was mind boggling and the worst of our experiences yet.