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 towards him, "and walking! Amazing!" Dr. Kim reached out and pulled me in for a hug.
"A night and day difference, no?" Dr. Kim turned and looked at the resident.
"Yes, we were just saying that" the resident cracked a smile.
"How are you feeling Lasha?" Dr. Kim turned.
"I can see out of both my eyes and I am walking" I replied.
Dr. Kim sat opposite me as the resident went over the general status of my report, the whole time Dr. Kim watched and observed, and at the end of the resident's report Dr. Kim turned to me, "Lasha, I want you to continue walking more and more and you will get stronger and stronger everyday!"
"I am trying" I responded.
"Dr. Kim, may I have a picture with the man who changed my life?" I asked before he left the room.
A big smile came over his face, "Yes, I would love that".
Chris pulled out his phone and took a picture of Dr. Kim and I together. A picture I may one day frame and hangup as a reminder that miracles really do happen everyday.
On our way out of the office we saw Margaret, "Your Pathology report hasn't come in yet so give us a call next week and I'll give you the report over the phone."
Chris and I left Memorial Hermann Hospital, sutures removed, and walking behind my wheelchair.
I waited for my pathology report from July 24th to September 3rd. I knew that most PGCTs were benign, but there was the small chance that it was not, and waiting those 2 months was stressful in its own way.
By September 3rd, I heard back from Pathology and they informed me that they had sent out my results to Dr. Kim's office.
It wasn't until mid-September that I finally got an answer, "Hi, I'm with Dr. Kim's office and I am calling about your pathology report."
"Oh yes, thank you for returning my call, I've been waiting." I responded anxiously.
"Well, I have some unfortunate news. Your sample never made it to Pathology, so Pathology didn't have anything to report on, I apologize but this is why it has taken us so long to get back to you." the lady's tone got more sheepish with each word.
"I'm sorry, I don't understand." I thought maybe my brain wasn't processing what this woman was saying to me correctly - I did just go through brain surgery.
"I spoke to Dr. Kim and he looked into it. It turns out your tumor was lost on it's way to Pathology. Somewhere between the nurse who was issued to take it to Pathology and being handed in at Pathology."
"So we don't know if my PGCT was a cyst or a pineocytoma?" I replied in annoyance.
"Well, Dr. Kim said when he removed your PGCT it, for sure, wasn't cancerous. Unfortunately, he can't speak to whether it was a cyst or a pineocytoma, that's why we send it to Pathology."
"Oh, okay." I was shocked. I couldn't believe what I was hearing.
"You can still order the Pathology report if you want and see what I am talking about. It states everything I told you in the report."
"Oh, okay." I couldn't think of anything else to say to her and I have always hated when people shoot the messenger, it really wasn't her fault that the hospital lost my sample.
"Here's the fax number and what you will need to request." the sweet woman provided me with all the details and we hung up.
"How the hell do you lose someone's brain tumor?!" I yelled out in a fit of rage.
"Well, at least we know, for sure, it wasn't cancerous, that's the most important thing to focus on here." Chris grabbed my hand.
"Yes, that's true. You know baby, I was wondering why it was taking them so long to get my results back to me." I shuddered.
"That's because they didn't have any results to give you, that's a major screw up on their end, but we can't focus on that Lasha. It is your time to heal and get better. The tumor or cyst whatever you want to call it, it is gone, that's what matters." Chris reassured me.
Over the next few days I stewed in anger surrounding this non-existent Pathology report. I was mad that I went from a wheelchair, nonverbal, tremors, and loss of eyesight to walking, talking, and seeing without any reasonable explanation.
Now, I was angry that after brain surgery, and all the stress surrounding waiting for my Pathology report, someone at the hospital lost my flippen brain tumor!
To be honest, it probably took me a good week of soul searching to come to terms with this incident. Do I sound recovered - HA HA!
I stroked Chris' beard while he was driving, "You know what I have learned from this whole incident of Memorial Hermann losing my brain tumor?"
"What's that?" he kissed my hand.
"I have learned that in life my biggest lesson wasn't going through brain surgery, or not having anyone believe in my disease, but it was learning that it didn't matter if I had a brain cyst or a brain tumor. Both have repercussions and need treatment - regardless of what you want to classify it as"
"Yeah, you have put a lot of stock into whether it was a pineocytoma or a cyst."
"I thought if I knew it would help answer so many of my questions, you know?" I replied.
"I know baby" Chris squeezed my hand.
"Look at where you were to where you are today. Lasha, I have my wife back. We're having a conversation. You can remember what you want to say. You can walk beside me without loosing balance or having extreme pain. Lasha, tumor or cyst it never mattered! What matters is you getting better, focus on that."
With this new awareness I felt comforted that amongst the mistakes humans make (like misdiagnosing them or loosing someone's brain tumor) it taught me an enormous life lesson:
To always have faith.
Any mass, benign or cancerous, cystic or tumorous, in a person's brain can be life-threatening and all brain masses need to be taken seriously by medical communities worldwide.
Thank you everyone for following along my brain surgery journey. Please share my blogs and help raise awareness towards these rare brain masses.
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Sending you all much love, peace, and grace today special.
The PGCT & Mental Health Awareness Campaign