Updated: Nov 17, 2019
Week 2 Post-Op
In my first 2 weeks post-op I had seen many improvements in my health; I no longer had pressure headaches, my stroke-like symptoms on my right side had disappeared, and the vision in my right eye had returned.
Yet, inside of me I was battling a mental war. A mental war surrounding the "why's" and "how's" of how all of this could be?
Day 14 Post-Op
It was my last visit to Dr. Kim's office, they were removing my stitches and providing me with my Pathology Report. As terrible as it sounds, I was secretly hoping the Pathology Report would come back saying "pineocytoma" and not just a plain old "cyst" so all these odd symptoms before surgery would make some sort of sense... maybe, if it was a benign tumor, I could rationalize all that had happened to me?
When we arrived at Dr. Kim's office I walked in pushing my wheelchair.
Chris and I checked in at the front counter and found some comfy seats in a corner of the waiting room to sit in.
As Chris watched a TV show playing on the television in front of us, my mind wandered away in thought ... ever since the magnesium citrate incident I had been rotating between walking and riding in my wheelchair.
My vertigo, stroke-like symptoms, and tremors had disappeared, but how could this be?
It's not that I didn't believe brain surgery wouldn't change my life - it was that I didn't know to what extent.
I had been told by all of my doctors in Canada that removing the mass growing on my pineal gland wouldn't fix anything and that it would be a waste of money.
Neurology Visit 2018
"My 1st MRI said my PGCT was 14mm, my 2nd - 16mm, and now you're telling me its 19mm but it's considered stable and I shouldn't be concerned?" I couldn't believe what my neurologist was saying.
"Well your brain has a lot of room to move and a cyst on your pineal gland is rarely dangerous. A lot of people have them their whole lives and never even know it." My neurologist raised her eyebrows.
"You know Doc, I went in for a 2nd opinion to see a specialist down in Texas. He recommended removing my pineal gland cyst because it is causing mass effect and growing. He said it may even return my eye sight back to normal."
"Don't always believe American doctors Lasha! I went to medical school in the states and sometimes doctors down there just want your money." My neurologist rolled her eyes.
"And sometimes doctor's here just want to save money" I snapped back.
My neurologist lowered her head, "Look Lasha, I'll send you in for another consult with another neurosurgeon but it will be the same song and dance. Don't waste another neurosurgeon's time. You have a medical problem, probably Fibromyalgia and I'm referring you to a Pain Clinic, but all your problems have nothing to do with the cyst in your brain."
This was my 3rd neurologist in 2 years who didn't believe that my PGCT was symptomatic and with each doctor who chewed up and spit out my argument my anxiety and fear grew.
My husband and I believed that I could regain function and have my life back if I had brain surgery.
But, I had a mass growing in my brain since I was born; I was now 28 years old.
Over 28 years of pressure buildup, brain damage to surrounding areas, multiple hormone dysfunctions, and finally, body degeneration how much faith could one have?
Chris checked his watch, "Margaret should be out soon to get us. You know Lasha, I'm very proud of you for walking into Dr. Kim's office today. Soon, I believe we will be putting Hermando into retirement."
I remember having a hollow feeling before surgery. Sickening thoughts that I had suffered too much damage and that my wheelchair bound existence was my new life - my new objective-reality.
With those previous thoughts of acceptance, I was brought back to a memory before surgery, my last doctor's visit in Canada.
Pain Management/ Rare Disease Specialist 2019
Again, Chris questioned the doctor about my PGCT, "What about her pineal gland cyst? Do you think it could be causing any of her symptoms?"
"No, no, pineal cysts don't cause these symptoms. Lasha has Fibromyalgia and Myalgic Encephalomyelitis and she obviously hasn't been pacing herself!" The doctor shot an unhappy look in my direction.
"But this shaking, her vertigo, Dr., Lasha doesn't sleep. Her Sleep Clinic specialist said she never hits REM." Chris pulled out my Sleep Clinic report and placed it on her desk.
"Her body never gets any rest. The right side of her body is numb - it's as if she suffered a stroke on her right side. She can't swallow without choking on her water or food... she's loosing so much weight..." Chris was at the brink of tears.
The doctor interrupted Chris, "Mr. Barbosa, all that is normal for ME patients. If you want, or if it gets any worse and she continues to loose weight, we can provide her with a feeding tube. But it's normal for ME patients to shake when they have over exerted themselves. Their cells don't produce enough energy and if a ME patient doesn't pace themselves" the doctor shot another condemning look my direction, "they can become like your wife here."
"Lasha, you need to remember to pace yourself." she scolded me.
That memory has always brought about a feeling of depletion deep within me. I was suffering, right in front of my doctor's eyes, and in short I was told to "Suck it up princess this is normal."
Since 2016 (when I was first diagnosed with my PGCT) up until brain surgery in 2019, I was spoken down to, criticized, and made to feel guilty about not accepting my fate.
I was told I was depressed and anxious, that my periods were the problem, or that it was all in my head from some sort of previous life trauma, "Lasha you need to seek professional help!"
I was told being wheelchair bound and having a brain tumor was normal.
Back to Reality
Chris touched my arm and I looked up to see Margaret walking towards us, "Hello Mr. Barbosa, Lasha, you two can follow me."
I pushed up off my seat and started to walk as I push my wheelchair in front of me.
"Wow, look at you go Lasha! Don't push yourself we don't want you getting hurt." Margaret looked impressed but had her motherly tone on.
"I've been practicing, I told Dr. Kim I would be walking into his office next time he sees me and today is that next time." I smiled at Margaret.