Morbid Curiosity: I should not have Googled that

 

I have a sense of morbid curiosity and quirkiness that I feel blessed to have retained through all of this. A sense of the ridiculous can help in dealing with the random ups and downs of good and bad days. It serves to help me understand a small part of what is happening in my brain and it is fun. Then there are the times that all I can say is...

My curiosity has led me to trying to locate exactly where the midbrain is. This was the location explanation I was given at diagnosis. Additionally the neurosurgeon has notes describing how they retracted my brain to access the tumor during surgery. I was trying to figure out how exactly this was done. I know that my head was glued, face-down on the table. I know that my sternocleidomastoid muscle was cut to access the area; this muscle runs from behind the ear to the center of the clavicle (basically over half your neck). Additionally the tumor wrapped around all of my left cranial nerves and was pushing on them. My surgeon had to carve the tumor away from them and yet not cut or damage the nerve itself.

I got curious and I looked it up. Bad idea. Stop reading now if you don't want to know. 


So, the midbrain is a small structure located at the top of the brain stem. Yes, you heard right, I had a brain stem tumor. Um, what? Patients with large tumors in this area are usually dead or non-functional. Damn it. No wonder I am struggling with so much stuff. Additionally they estimate that 50% of the neurons in your brain are found in the mid-brain. (This is where I went to go dry heave a little.)

After recovering for a bit, I then wondered exactly what it means that my nerves were impinged by the tumor. I can do a lot, on good days I can look and appear to act normally, as long as I rest. Other times I am barely functional and can not respond or take in any stimulus or information. Out of curiosity, I went looking. (Why do I do this to myself?)

Let me break it down for you.

• V. Trigeminal nerve- numbness, difficulty chewing at times, control of facial muscles. Hearing issues on the left side.
• VI. Abducens- not too much trouble.
• VII. Facial- lack of taste, facial muscle control, left side palsy (since corrected).
• VIII. Vestibulocochlear- hearing loss, disconnect between my head and trunk during movement.
• IX. Glossopharyngeal- hearing loss left side, lack of taste and sensation, loss and struggle with swallowing reflex.
• X. Vagus- problems with speech, loss of speech, stuttering, difficulty forming words; compensating for poor muscle control with recruitment and surrounding muscles leading to fatigue. Cough reflex- my surgeon explained that my 4 month cough leading up to surgery was the first sign of a serious problem. It was caused by the pressure on the Vagus nerve from the tumor.

So, in addition to the nerve impingement which interferes with many daily functions the midbrain was being pressed, such that 50% of my neurons were adversely affected. Memory and cognition loss can be attributed to the pressure on my frontal lobe from loss of room and decreased levels of cerebral spinal fluid, which surround and protect the brain.

The more I learn the more amazed I am that I am here. I have retained much of who I am. I can relate to others and interact with my loved ones. I am more emotional and express myself more freely. I have had to go through some emotional healing and development, but what science says should have happened didn't. For that I will be eternally grateful. I am not dead. I am not non-functional. I have not lost who I am. I can love and be loved and those are amazing gifts.

God is good. He has us in the palm of His hand, and don't Google it if you don't want to know.



This is my tumor, tucked under my brain, it was grey and covered in blood vessels. And that, the part retracted is my brain. I have one! Not everyone can say they have seen their brain.



This is after some of the tissue had been cut away. As my doctor said "coagulate and cut, coagulate and cut." It took hours longer than planned and I am eternally grateful that he was there and willing to do the work.