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.
When we reached the room Margaret proceeded to prep for my suture removal.
"What would you say is the best symptom to have disappeared for you, Lasha?" Margaret turned around from a cupboard with instruments in hand.
I had to stop and think about it.
Honestly, I couldn't put my finger on one thing and that question seemed to hit me like a brick wall.
I hadn't had thought about what the best symptom was to have had disappeared, I was fixated on how could so many symptoms have disappeared?
"I guess... my eye sight..." my eyesight was the first major sensory organ to fail on me back when my disease progressed.
"I would think it would be your voice?" Margaret responded as she tugged another stitch out of my war wound.
"Yea, that is true too." I shook my head in agreement.
"Oh, stay still" she laughed, "Wouldn't want to tug too hard on one of these guys."
"There is just so much that Lasha has gotten back that I think it's a little overwhelming for her at times." Chris interjected.
"Yeah no doubt. I mean, it's a big change in you since before surgery. It really is amazing." Margaret started to cut another suture and pull.
"It's great to see you with your sunglasses off and those pink glasses are really cute!" Her upbeat attitude and loving spirit always made me feel comfortable.
"All done! No more stitches. Here..." She handed a few packs of medicated gel to Chris, "she will probably need your help to put this on everyday for the next 10 to 14 days. It will help keep away infection and help with the healing process."
"Thank you so much." Chris replied.
"Margaret, before you go, do you mind if I get a picture with you?" I asked.
"Of course not!" Margaret quickly, but tidily, finished cleaning up her suture station, washed her hands, and came over to hug me for the picture.
"You take care of yourself and send us an update in about a year with how you are doing. We always enjoy those kind of updates from our previous patients." As Margaret exited the room, she gave me one more big hug and told us the doctors would be in shortly.
The resident doctor entered, "Woah, Lasha, it's truly a night and day difference every time we see you!"
"How are you doing?" he asked.
"I'm doing well" I stood up and shook his hand.
The resident sat down and went over some standard procedures. Once he was done explaining himself he asked if we had any questions.
"Where was her PGCT located?" Chris jumped in.
"Lasha's PGCT was quiet big" the resident raised his eyebrows and nodded his head.
"It was over 20mm when we removed it but we are still waiting on her Pathology results. Her PGCT was pressing deep into the far left of her brain; as well as, it was pushing forward so it was cutting off some oxygen and blood supply to the prefrontal lobes. Her PGCT was concentrated in the primitive part of the brain, which tells someone to react to a threat or to chase something. We still don't fully understand how this part of the brain works."
"Are PGCTs some how correlated with Fibromylagia? So many of us suffering from PGCTs are being diagnosed with Fibro and ME." I interjected in hopes for answers.
"Well, Fibromyalgia is a relatively new disease and we are still learning a lot about it. Same goes for pineal gland cysts and tumors. The pineal gland is thought of, in most of the medical communities, like the appendix was thought of years ago. An organ with relatively no purpose in the body, it didn't matter if you had one or not, but that attitude is changing. Now, we are learning that the appendix actually plays an important role in the human body." The resident replied.
"How is it possible that I went from debilitating body pain, eyesight loss, stroke-like symptoms, tremors...to this... walking, talking, being able to see? I don't understand." I shook my head in frustration.
"Well Lasha, sometimes you don't need to understand. We, as your doctors don't even understand and we preformed your surgery." The resident laughed.
"Lasha, you aren't the first patient, and you won't be the last, to come here in your condition and come out of surgery with a night and day difference."
"How is that possible?" I shook my head in disbelief.
"We still don't know enough about the brain, specifically this pineal gland, to understand what it does and doesn't do in the human body. But, right now, we don't have to understand - look at you! It's a miracle! Sometimes doctors just need to say we don't know and look at the evidence in front of us; Lasha you are walking, talking, and able to see again."
"You know a lot of people have come to see Dr. Kim for this surgery and have regained their lives back. They return to work or have gone back to school because of his expertise. But, when they return home and show their results to their doctors, or God forbid they take it to Court, they are torn down and told it's just a placebo effect." Chris stated.
"Yes, unfortunately a lot of doctors are in that boat and disagree that a pineal gland cyst can cause symptoms. Is what Lasha experiencing a placebo effect? Maybe 5 to 10 percent, yes. We went into her brain and surgically removed a tumor. Anyone coming out of a surgery like that will automatically feel relief knowing their tumor is gone. But, the other 90 to 95 percent is not a placebo effect, look at the evidence, it's right in front of us." The doctor smiled a huge smile at me.
"Mr. Barbosa, I know I keep saying it but she is a night and day difference from before surgery to now. We don't have to understand just be thankful and I would say believe in miracles." the resident laughed.
The door opened and in walked Dr. Kim, "Would you look at this beautiful woman in front of me!" he exclaimed.
I stood up and walked