November 21, 2016
Instead of heading south out of the snow, I am stuck in Minnesota on a health detour. The fifth wheel and truck sit in the driveway like a Yellowstone bison standing in the snowstorm. The white powder and ice just pile up waiting for real movement again. I watched and waited to hear what the next step is going to be. Brain Surgery? When?
The week passed and the morning finally arrived after three appointment changes. Once again nerves set in during the night before and I received only three hours of sleep. Needless to say I was ready to hit the road, fight the rush hour traffic, hear some news and get some answers.
I was not quite sure what to expect at this first consultation but at least my husband, Joel, was with me now. We met with the neurosurgeon who is going to do the surgery. He finally showed me the MR images, double checked my symptoms to see the effects the tumor had on my nerves and explained a little about surgery.
The doctor confirmed the tumor is considered an epidermoid mass. This means it should be benign and has been in me growing since 3-5 weeks after my conception. So, it took 40 years for a birth defect to show up. Go figure. Basically when the embryo cells were dividing, the cells that formed the skin and the nervous system came from the same place. Evidently, some of the cells for my skin got trapped inside the fluid space around my brain and kept growing just like skin cells continue to grow and replenish themselves on the outside. This was slow growing and took all of this time before symptoms started showing up.
The mass is over 5 cm round and over an inch thick. I had a hard time coming up with an object with a comparable size. I told my boys that I just needed to get an “egg or two” out of my head. They humorously grasped this idea well because we used to have egg layers. The MRI showed how the mass is pressing my brain stem flat. Another view showed it taking up around half of the space of my cerebellum (the lower back of the brain). I wonder if my years as a pianist, crafter, and artist helped develop my cerebellum well enough to not see effects until now. Regardless, I thank God for helping the doctors identify this before my symptoms became more serious.
This is an extremely rare tumor as less than 1% of all tumors are this kind. Then only 20% of these epidermoid masses grow in the same area as where mine is growing. This really works in my favor for a “simpler” surgery with no radiation or chemotherapy afterwards. A non-aggressive surgery must take place that may leave some cells behind, so I do not get any brain or nerve damage. Unfortunately, this can mean multiple surgeries in the future and yearly MRI’s. Hopefully since it took 40 years, it will take just as long or more before I have issues once more.
The surgeon explained he plans on extracting the mass from the back of my skull. With an incision of 2-3 inches, he will cut some neck muscles, chip off a bottom center of my skull and enter the spinal fluid space right underneath. From there, he’ll have to take as much as he can out without damaging anything else it may be attaching itself to. This type of sticky tumor develops around everything, so it is important to get it out before it reaches even deeper and in more difficult spaces, let alone totally block the flow of my spinal fluid. The overall surgery should take a mere 4 hours. He said that it is not an emergency, but critical enough to need the surgery within the next three months.
Afterwards I get to experience the thrills of some heavy duty pain-relieving drugs for 3 days starting in the ICU. Internet references tell of extreme muscle spasms in the neck area, intense headaches, and vomiting during the recovery time. They will have to watch for fluid build up, brain swelling, and nerve damage. But, once I am out of the hospital I should have only a 14 to 21 day recovery time.
With greater understanding after this appointment, I have considerably more peace with the up-coming event. This is still a consuming thought, but at least my natural reactions have greatly diminished. I still have trouble sleeping through the night, but at least my appetite has come back. I no longer shake and can discuss this with you.
I attribute my peace also to some wonderful family and friends who took the time to pray for me. I truly appreciate that. God has shown me His lovingkindness and faithfulness during this time. I may be in a pit in my life, but, from my view, I see much deeper ones others are in. God is faithful and He reaches much further than where I am at. He can reach you as well.
Until we meet again,
p.s. If you want to learn more about how to have that peace, see the link or google “Two Ways to Live”.