These next several blogs are part of a series that I’d recommend be read in order. I haven’t wanted to post anything recently, and now you will understand why. For a variety of reasons, we decided to keep this information limited amongst a very small circle of people, but now that the picture is largely filled in, we are ready to share our story with you.
Today a date for my brain surgery was scheduled. Yes you read that right. So saying, “well at least it’s not brain surgery,” unfortunately doesn’t apply from here on out.
For months we’ve been trying to figure out what is going on. Headaches and some other symptoms lead me down an investigatory path to figure out if anything was wrong. I truly thought that when I got the call from my Dr. about my MRI results in April, she would tell me it was nothing and all in my head. But what the MRI in April revealed was what appeared to be a brain aneurysm. So a CT scan with contrast was ordered as a follow up sometime in May. The CT scan wasn’t conclusive with what the MRI revealed. It was thought that maybe, the aneurysm happened, healed and scarred over, and miraculously figured itself out. My primary care Dr. said this was the best news I could receive and told me I’d experienced a miracle. Miracles aren’t new in our house so I thought, “wow! that’s great!” If she didn’t tell me to follow up with a neurosurgeon, I’d probably have left it at that.We’ve since learned that an aneurysm happening and miraculously figuring itself out would be considered extremely rare, but as you know, we basically live our lives in the extremely rare zone.
We met with a neurosurgeon on June 1st and were prepared to get the information that the lesion had figured itself out and there was no need to worry. But what we got was the complete opposite.
During that meeting the Dr. said it was either an aneurysm or a tumor and that more testing was needed, a cerebral angiogram to be exact, and he prepared us that an invasive brain surgery could be in the near future depending on the results. He wasn’t sure what the lesion was, and stated it had “a very unusual presentation” and that it needed to be treated due to the size and location. The goal of the angiogram would be to provide more concrete information so that the treatment plan was clear.
Rob and I left that meeting in complete shock and disbelief that this was the path we were on. We were not prepared for that meeting and walked the parking lot in a daze toward our car. I remained on edge and freaked out for my upcoming angiogram b/c they go in the femoral artery and I would be awake! For the angiogram, my Dr. gave me a cocktail to help relax me but it was WEIRD. I remember everything and then I had the bright idea to open my eyes mid procedure and looked at the wall of monitors (eight monitors to be exact) and it looked like star wars was happening on the screens, except it was the arteries in my brain and the dye going through them. It looked insane.
Unfortunately, the angiogram didn’t confirm an aneurysm either. We brought in another Dr. for a second opinion and learned that the surgeons had already consulted with one another. It appeared that whatever the heck was in my brain was a mystery to two very well trained neurosurgeons, trained in diagnosing and treating both tumors and aneurysms. Because I sought a second opinion and these Dr.’s were already communicating, they began working in tandem discussing my case and sharing results and information.
One final test was ordered, another MRI, this time with and without contrast to hopefully provide more insight and a clearer answer. My MRI was done right before we left for California; the second opinion Dr.’s office called me on our way to the airport. His assistant read verbatim his notes of the MRI: “I’m actually more concerned it’s an aneurysm based on some sequences.” and that’s what we headed off onto our 10 day vacation with.
While on vacation the primary surgeon contacted me with a much more detailed report of the latest MRI. He said that the lesion lit up and took up contrast, meaning that there was blood flow and it could be “churning” a clot and that he was leaning toward it being an aneurysm but still wasn’t 100% sure, and didn’t leave out that it could be a tumor. He recommended surgery b/c at this point all the tests had been done and the only way for a definitive diagnosis was to perform brain surgery.
The risks of not doing the surgery would be the aneurysm ruptures. Not good. And if it’s a tumor, it could grow. Also not good.
The risks of doing the surgery are low at 3-4%, but they aren’t pretty and include the need for a blood transfusion, stroke, seizure, weakness, paralysis, risks associated with anesthesia.
Here’s what the brain surgery will entail:
- An incision on the right side of my head
- The Dr. will pull the skin back
- Remove a portion of my skull (I’m literally dying as I think of this)
- And then either clip the aneurysm or remove the tumor
- He’ll put everything back together (with staples) and add a fun titanium plate and I’ll be in the hospital recovering from my “craniotomy” for at least three days.
Guys, these are all the facts and information that’s been thrown at us and have been swirling around since I heard the word aneurysm and learned what that might mean. But want to know how I feel?
Worried I won’t wake up from surgery the same, based on my experiences with Reagan.
Hopeful my symptoms are relieved.
Calm, knowing God has my life in his hands.
Freaked out for my friends and family.
Consumed in thoughts about how Rob must be feeling.
Questioning God. Wondering if it’s me that needs to learn something or if it’s someone else who needs to benefit by watching our family walk through yet another difficult and rare circumstance.
At peace. Knowing there’s a reason this is happening.
Annoyed that I may never know what the reason is.
Wondering. How this will impact our future with Reagan, with each other, with work. Will it be a big deal, will it not?
Reactions of other people. People generally have good intentions but words can fall flat and dust up disappointment that I’m all too familiar with.
Sharing. Vacillating between how much to share, when and how. Wanting to give God the glory during a really difficult time and figuring out how to do that.
At this point I’m waiting. Waiting for July 31. Between now and then I have an EEG, pre-op stuff to complete, five closings and I HAVE to get my hair done. The recovery time is six weeks and my surgery is just days before my next hair appointment so I moved it up. B/c there’s no way I’m allowed to have dye and highlights all up in my wound (shudder) that’s just so gross to me. I don’t know how long the healing takes but I need to make sure my hair is at least on point.