Cavernous Malformation & Developmental Venous Anomaly (DVA)

Monday, May 20, 2013

Hello friends! This post is going to be personal and have a science message to it, as well. Much of it will just be for me to chronicle and process my emotions.

Most of my life, I’ve had headaches. Lots of them. The older I got, the worse they were. More than 10 years ago, I went through an elimination diet over the course of 6 weeks to see which of the “trigger” foods could potentially be migraine triggers for me. Through this process, I discovered raspberries, raw onions, and bell peppers (cooked or raw) were triggers.

Last week, I was dealing with some vertigo and a nasty migraine that had me laid out. So much so that I went to my doctor. After discussing my history and making a hypothesis, she ordered an MRI just to rule out something more dramatic as the cause. Her hypothesis, she thought that I had developed stones in my cochlea and these were causing ripples in my cochlea and disrupting my hair cells (yes, it’s what they are called), which caused the dizziness and imbalance, or vertigo. I had a prescription for the vertigo (which put me to sleep, basically) and a prescription for migraine (which I need to take when I see the signs of a migraine forming, which isn’t always the case for me, and so medication doesn’t usually work for me in that regard).

I went in for my MRI and this was a big victory for me. I sometimes get claustrophobic. I also freak out if someone is going to stick me with a needle and I can’t watch. With a brain MRI, you are on your back, your head strapped into a plastic cage with a mirror for your eyes. Then, you are moved into the large tube where you hear the powerful magnets whirring. Towards the end, then pulled me out, and had to stick me with an IV for contrast to see other parts of my brain. I did my best to not hyperventilate during this time b/c I couldn’t move my head to see the nurse poking me with a needle. All in all, I was probably in the machine for about 40 minutes total. Imagine being stuck in one of those plastic tubes kids play in and you can’t move. Afterwards, I looked back at the machine and smile. I’d had the courage to face another fear.

Days later, I’d received a call with my results. This was my reaction…(ugly cry)

Things didn’t come back normal. I have to pause and be grateful that I don’t have brain cancer. It was a far-fetched possibility, but nevertheless, a possibility. Still, You don’t ever want to be told that there’s something wrong with you…reminded that our time here is limited.

Cavernous Malformation & Developmental Venous Anomaly (DVA)

That’s a whole lot of fancy words. Basically, I have a cluster of blood vessels* in my brain and a small compartment filled with “stuff”. I lovingly started calling it my cluster-eff. I am prone to headache, nausea, visual disturbances, sleepiness/somnolence, and other neurological deficits (imbalance being one of them). I have a reason, now, for why I have felt the way I’ve felt for so many years. That makes me very happy. But in addition to those things, I am also at risk for hemorrhage, seizures, aneurysm, and stroke. Do you know how many concussions and other head injuries I’ve had in my life?  I am well aware of how lucky I am to have not experienced any of these major issues as a result.

I will soon have an appointment with a neurologist. Right now, I know my options are surgery or no surgery. I’m hoping there are other options. I’m optimistic that things aren’t as worrisome as I initially thought, but I won’t know for sure until my appointment.

I do see it as a reminder for me to stay my course. To live my life fully and completely, absent of things (and people) that cause distress. To embrace the gifts I’ve been given. Literally, embrace them…my best friends near and far immediately by my side supporting me. In a discussion with my Beloved, he told me quite frankly, “Bianca, we are all given the same amount of time here on Earth.” Questioning, I gave him a look, and asked, “How is that so? We are each given different years, some more than others.” To which he replied, “Bianca, we are all given a lifetime, that is the measure. I fully intend to make the most of the rest of my lifetime with you.” I choked back tears, nodded my head, and then we proceeded to discuss our budget and monthly plans, because that’s how we roll. Life still goes on and we just can’t stop.

I hope if you are having real health issues, please go get them looked at. Don’t hesitate! And it is ok to talk about your worries and fears. You aren’t alone in your struggle. If you feel you are alone, drop me a line. I’ll listen to you. I’ll support you and will virtually hold your hand. *hug* It’s gonna be ok!

*(I hope it is in the starburst shape!!…gotta look at positive in this)


Angi said...

OH Prima!!! You will be in my prayers!!! Whatever your next appointment intails and whatever the next course may be - I pray it's a smooth one. I'm sending you ((HUGS)))!!! Hang in there!!!! Much love!

chae said...

I love what Don said about we are all given a lifetime. This is just something that will make you stronger. Something you can look back on someday and say it made you cherish life and your loved ones more than ever.

The Steinman Squad said...

You can count on prayers from my camp as well. Please keep me posted and let me know if there is ANYTHING I can help with. I agree with you 100% percent though - do not wait to see a doctor for the smallest inkling of something not being right. Be an advocate for your own health and your life.

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