Wife. Mom. Acoustic Neuroma Warrior.

Just when I thought I had it figured out…

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My brain. Oh my brain. Sometimes, my brain cooperates with daily life, sometimes it has internal struggles. And now? It’s changed it’s mind about what was happening prior to July 31, 2017.

This post has taken me a long time to write, partially because accepting a new diagnosis means I have to search for doctors that can help me understand what it means, and also because I have SO many new, unanswered questions which comes with new uncertainty.

My pathology report came back on what doctors thought was an acoustic neuroma (also known as a vestibular schwannoma). Well, wouldn’t you know? Even though it looked like a duck, and quacked like a duck… It was NOT an acoustic neuroma. Even to this day, my post op symptoms are more aligned with patients who have an acoustic neuroma when my little friend actually came back as a cavernous hemangioma. I really don’t know too much about this new diagnosis, as all I’ve figured out so far is what I’ve read on the internet. What I do know: Cavernous angiomas are vascular lesions comprised of clusters of abnormally dilated blood vessels. (angiomaalliance.org) As a visual, I’ve been told it’s essentially a raspberried cluster of blood vessels and, when in the brain, can cause bleeds which can lead to or mimic a stroke (or maybe it’s just considered a stroke? See, I have no idea.)

This new label came after we found out we were expecting our newest addition to the family, and it has made it difficult to get answers because so many of the tests cannot be completed while pregnant. It’s made this pregnancy a little bit terrifying, but we just know this sweet baby boy is supposed to join our family, so I am exercising a lot of faith that things will work out and that me and baby will make it through to August just fine! Another interesting thing about this angioma diagnosis is that we have FINALLY found someone who recognizes there could be a link between my angioma and these pesky little pregnancy tumors I get every time I’m pregnant. With Jack, I had a pyogenic granuloma (aka pregnancy tumor) in my gums. With Graham, that pesky little tumor came back in my gums and brought along a friend on my upper lip, which I ended up having cut out about half way through my pregnancy because it bled really easily. And this time around…I have the return of the gum tumor in a new location, and just had another pop up on my upper lip recently. This newest pregnancy tumor is what pushed myself and Bryan to insist of answers and understanding. He spoke with a pathologist who recognizes the irony of these recurring tumors and the appearance of my brain tumor during Graham’s pregnancy, and while they might not be in the exact same “family” of tumors, they are built very similarly in that they are all vascular lesions. This means, I need some tests. I need to figure out what is going on with my body, and I need to be aware of changes I may be feeling so that I can bring them up with doctors who will be willing to help me figure out these issues. The hardest part is figuring out what kind of doctor that might be as I have a neurosurgeon who helps with the brain stuff, a dentist who helps with the gum stuff, and a dermatologist who helps with the face stuff (even thought the last dermatologist was convinced this monster on my lip is a cold sore, which I’ve never had in my entire life, and looks/acts nothing like a cold sore…unless cold sores bleed like crazy when they are touched) but haven’t yet found one that deals with connecting them all.

That is the next step in my journey: finding answers. Our constant prayer is that I won’t have any internal tumors during this pregnancy and that we will be able to get answers soon. I’ve been instructed by my neurosurgeon to get an MRI (with contrast, which can’t be during pregnancy) as soon as I feel comfortable doing so after baby boy #3 is born.

Until then, faith, confidence in this journey, and maybe some tears of stress. It’s all about balance , right?

1 Comment
  1. Amanda says

    God bless you two….prayers that you find all of your answers!! ❤️

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