Pineocytoma and age

Hi @kristin1990, welcome to Connect. I did a quick search on Connect and don't see any discussion specifically about pineocytoma, regardless of age. Some people have talked about pineal tumors and/or cysts. As you know pineocytomas are quite rare. This is a great discussion to get started to attract others who have experience with pineocytoma. Maybe you can kick it off.

What treatment did you have as a child? Are you experiencing any long-term side effects now as an adult? Do you continue to have follow-up appointments?

Thank you Ms. Young for the warm welcome.

My apologies, this will be long, so please stop if it becomes tedious. I am an avid writer, so I will make it as grabbing as possible.

I was diagnosed upon a fall from the steps inside of my family home. The fall agitated the tumour, and so too, the occipital lobe, causing me to lose my eyesight. The tumour compressed the base of the third ventricle causing Acquired Hydrocephalus which I still live with today. The excessive cerebral spinal fluid had been building up for months which had caused headaches and bouts of nausea. The headaches and nausea coincided with the flu season so there wasn’t much worry until I had lost my vision.

It was actually my eldest brother who had found me after the fall. He didn’t see me fall and thought that I was hungry, he tried to console me and then went to the kitchen to get me cereal and proceeded to try to feed me (He was five and a half). He then called my Mum for help. My Mum, a new mother of a nearly three month old baby, picked me up and brought me to sit on the couch, soothingly telling me that Care Bears was on. She turned on the television and I told her that I couldn’t see it. That is when she called 911. My Dad met me at the hospital.

I was taken to the local hospital and then transported to the Hospital for Sick Children where I got an MRI to find out what was wrong. During this scan, my poor parents were grilled by the police as they had to rule out abuse. My parents were quite jarred by the whole experience. I felt horrible for them when I was old enough to know what was happening while I was being cared for. This was March 9, 1990.

The MRI showed that I had a pineoloma.

I had an operation to implant a VP shunt. A biopsy on the tumour confirmed that it was a pineocytoma.

My diagnosis led to two months of research, my doctor, Robin P. Humphreys, did extensive research and even designed a utensil to excise the tumour as my cranium was much smaller to the average patient that is treated. My excision was on May 9, 1990.

I got to celebrate my fourth birthday at home. I was very grateful as my Grandmother lived with us. She was a major caregiver and friend in the following years. I stayed home a lot from school so she and I were as thick as thieves. She taught me how to sew and cook and nourished my creativity. She helped me survive survival.

I started school that September.

(You can stop reading.)

I received 25 treatments of radiotherapy of 5000 Gy within the next year. Honestly, time didn’t make sense, but as a four year old, when does it?

I attended neurology, oncology, ophthalmology (strabismus) and endocrinology (precocious puberty) clinics until I turned eighteen. I used to spend days with my Dad in his work, drawing, waiting for clinics. Both of my parents would attend with me when their work permitted. Thankfully, they had amazing supervisors who allowed them all the time that they needed.

With all of these clinics, it was difficult for me to connect with other children my age as I was rarely in school. My shunt also got blocked about six times so I would miss weeks at a time. In spite of this, there was one boy who stuck it out with me. We were both odd balls and found comfort with each other. He works with Walmart as a Photo lab technician and is very dedicated to his work. He is very active in the community theatre and is an avid photographer. He keeps me fed on the newest animation hits and is a fantastic listener. He is also awesome when you have no desire to speak at all.

I met another girl when I was 10 years old, she was a year younger, we were in a split grade. She was the one other kid that looked like me so we clung to one another. Her parents were from Guyana, mine from Trinidad so we were very happy to have someone to compare notes of food, music and culture in general. Plus if Justin or JC was cuter. It ultimately ended up in a tie. She is now a nurse and works in Abu Dhabi.

(No, really, you can stop.)

The long term effect of treatments have changed my life. The radiation destroyed my short term memory (Temporal Lobe irradiation). I am essentially Dory from Finding Nemo, or for the more mature audience, Lucy from 50 First Dates. If I need to learn something, I must dedicate myself to that topic. My immediate recall is non-existent, but my working memory and long term memory are quite impressive. I have taken several neuro/psychological tests over the years with the same results. I get big hugs from my professors if I run into them.

As of late, 2009, I suffered what was deemed a psychotic episode where I lost all memory. It was one of the most terrifying episodes in my life. My entire personality changed as well. I was deemed psychotic by poor triaging and put into the psych ward: It was my second year of university and I was studying in the university’s library. I fell asleep and then woke up disoriented. When I was taken to the hospital, the events and images that I was describing came across as what was diagnosed as disassociation. In truth, I was experiencing a seizure.

The timeline is somewhat distorted for me here. The seizure caused me to experience three months within my mind. I experienced the emotions, the time, the feelings, the events, in what felt like real time and then I experienced it in real time. It sounds insane and it was. And instead of getting an MRI, the doctor kept me locked in the psych ward. In this time, my brain was apparently bleeding. I have no idea how I was jumped from the ward, but my parents fought hard to get me out, thankfully, they did.

(Thanks for sticking with this autobiography.)

It wasn’t until 2013 that I got properly diagnosed at the Universal Health Network (UHN) after another seizure. Again, no one had data on someone this young. I remember trying to find journals but found nothing. My new Neurologist apologized deeply for the misdiagnosis of the previous doctors at the other hospital and made sure that I would be triaged to the UHN in future events. I have 10 Cavernous Malformations in the region of where my tumour was and where I had my radiotherapy. The Mayo Clinic states that this is one of the causes. (I tried citing the Mayo Clinic, but it won’t let me. Look it up if you wish to know more, I hate not having citations. I’m a researcher, I cannot not have citations in my writing if I cite something.)

I seized again 2017. I had been working with Home Depot for just over a year where I began to be be bullied by a coworker. It was a hot day, the stress high and I reported the abuse to my manager. This coworker physically confronted me for telling. This caused my brain to explode. I couldn’t sleep, I experienced hallucinations, the effects of this bleed were the harshest I experienced. It’s taken just under two years to recover. I actually moved out on my own for a few months to recover as I needed to strip myself of those reminders and stimulants. In this bleed, my brain created an environment where even my parents were hostile. While my parents knew what was happening, they allowed me to move out so I could manage my blood pressure. I moved out to a group home that allowed me to be independent while managing my medication.

I eventually moved home when I regained a sense of me. This ordeal was from May 2017 to almost December 2017. Since 2018, I have been working with a rehab worker and they have helped me to get back on my feet. I managed to get myself off of the psychotic medications as well as the sleep aids. I have managed to regulate my sleep again and that was one of the hardest part of this ordeal.

Note to self, as noted by my GP and rehab worker: NO MORE SHIFT WORK.

My rehab worker is with the March of Dimes Canada and has been an essential aspect to my recovery. She has essentially become family according to my parents. She, with the aide of her coworkers have brought me back to me. With her help, I am volunteering with the hospital in the surgical ward. I help in the area of post op, getting patients drinks and stripping gurneys when patients are discharged and basically bringing around a sunny disposition.

Life is a roller coaster, but I am still on track. I count it as a win.

I turned 33 this past Sunday.

(Hey! You made it! Gold Star!)

Thank you for reading.