After weeks of not knowing what is wrong with me, how I can treat this unknown, and how I will live with this unknown, I finally know.
Two days after my Bloody Mess, I met with my neurosurgeon, receiving the hardest news I have ever had to digest. Apparently, I have a condition known as arteriovenous malformation (AVM), which essentially means that I have abnormal connections of the arteries and veins in my big brain. This likely happened before birth. These abnormal connections tend to rupture causing internal bleeding.
Wait, there’s more.
To make things more complicated, I also have an aneurysm which is 4 cm long within the AVM. This aneurysm is actively growing, and has grown large enough to cause vertigo and brain swelling. The problem with active aneurysms is its volatility; it can rupture anytime (tomorrow or two years from now).
Also due to the size of the aneurysm–it is officially in the “giant” classification–if it ruptures, I will have hemorrhaging in my brain, which my surgeon says would be “disastrous.”
Wait, there’s more.
Some of you may recall that back in December 2009; I experienced an excruciating headache at work that required my coworker to take me to urgent care. My overall symptoms were:
- “The worst headache of my life”
- Stiff Neck
- Sensitivity to light
- Double vision
These are all symptoms of bleeding in the brain. The only symptoms I did not experience were the seizure and the loss of consciousness. Though doctors are hesitant to retroactively diagnosis this incident, they do consider this an indication of dangerous activity in my brain.
So what are my options?
1. Do nothing and observe. This essentially means no medical intervention, hoping that the aneurysm will not rupture. The surgeons highly discourage this approach because the aneurysm is proving to be active.
The Problem: It less of a matter of “if” and more of a matter of “when.”
2. Endovascular treatment. This is very similar to an angiogram, in that a catheter will be placed in my artery to access the brain, but rather than injecting contrast, the surgeon will use a glue-like solution to seal off the AVM housing the aneurysm. This approach would essentially stop the blood flowing from the artery to AVM, and most importantly, will stop feeding this aneurysm, making it less active.
The Problem: The location of the aneurysm is very close to the artery, which may prevent sealing. Also, if the glue is not stable, it could be swept up through the artery causing me to have a stroke. Oh, one last thing, surgeons are not even sure they can even reach it in the first.
3. Radiation: This approach will attack the aneurysm, shrinking it until it’s no longer a threat. Radiation is often combined with endovascular treatment.
The Problem: Radiation does not yield noticeable results until after a year, which may not be timely in approaching the urgency of a possible rupture of the aneurysm. Also, did I mention that exposure to the radiation can cause me to lose hearing in my right ear, lose full functionality of the right side of my body (I’m right handed), and give me an unbalanced gait. I would likely have to attend physical therapy afterwards.
4. Open Brain Surgery: Just like it sounds, they would go into surgically remove the aneurysm.
The Problem: This procedure would likely kill me or, at best, paralyze me.
Well, numbers 1 and 4 are completely out of the question. So that leaves 2 and 3.
On Friday, the surgeon will give me another angiogram; however the intention is not capture images. He will inject the contrast into my brain, exploring if the aneurysm is reachable. If it is reachable, he will then assess if glue can safely be applied.
The application of glue is important because it will cut off the blood supply feeding the aneurysm, ultimately halting its growth, thus minimizing the threat of further symptoms and complications.
However, the aneurysm will still be there and I will still have my current symptoms and threat of rupture. To eliminate the aneurysm, I would then follow up with radiation, which could be a year-long process, not including any possible physical therapy.
On Friday, if the surgeon cannot use the glue to seal the AVM housing the aneurysm, we will proceed straight to option 3 and attack the aneurysm with radiation. The largest concern is that the radiation will not address the urgency of the aneurysm, as this will likely be a 2-3 year long process. Also, if the aneurysm is still growing, will the radiation sufficiently counteract its growth?
So this is where I stand as of right now. Thanks for all of your well wishes and concerns.
Keep me in your prayers.