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Mon, Sep 23 7:20pm · Has anyone with a Brain Tumor experienced hair loss? in Brain Tumor

I’m six months shy of my 30 year diagnosis and treatment and I still experience thin hair around the radiation site. My hair is very fine and I am constantly readjusting my hair to hide the balding. My Mum is an aesthetician and she is always finding ways to help my poor follicles.
In terms of feeling, the operation site has feeling, although I don’t let many near it. It can be tender. The lack of feeling could be nerve related. Or could be that the brain is overwhelmed with input, it cannot translate the sensation. But I’m no doctor. I recommend that you talk with the doctor with your concerns if you can. I wish you and your daughter the best.

Fri, Aug 16 11:05pm · High grade Glioma - What questions should I ask? in Brain Tumor

First of all. Don’t panic. Easier said than done. But what you can do is take into account of how you are feeling, physically and emotionally. Take into account of yourself as I have found we can get lost in the diagnosis and treatments. Affirmation of who you are, I found, was critical for me, you are not just a case to be studied.
Pay attention to your senses and capabilities as these can be affected by the changes in your brain.

If you wish, you can read journals although I suggest joining a support group for moral support as well as access to information, check out MassKickers via Facebook for starters, we have a great team of brain tumour thrivers on there.

Keep a journal of your thoughts, emotions, symptoms. It is helpful to sort out the things going on in and around you. And don’t stop enjoying life. Remember to treat your spirit as much as your body. A positive mind can do wonders for the brain.

I found painting and wood work to be very therapeutic.

Thu, Aug 15 10:40am · My child was diagnosed with Major Neurocognitive Disorder in Brain Tumor

Hi @nakiasimone. I am not a parent, but an adult who was diagnosed as a child. I had a pineocytoma as a child and a barrage of treatments, radiation included, which caused several secondary issues as of late. The tumour compressed the third ventricle so I also have Hydrocephalus (water on the brain) where the cerebral spinal fluid is obstructed from flowing normally. I have a VP Shunt to help that along and have had ops to correct blockages when they occurred. I have had eye operations to correct my blindness that was cause by the Hydrocephalus. I can see now, though I have strabismus. I remedy this by doing archery. :).

It is said that the brain does not heal, but this has been proven incorrect as of late. The brain is an amazing organ and is capable of reprogramming itself, but I believe this is also due to will power, you need to want it.

I had radiotherapy the same year I was diagnosed, 1990-1991. I started school in 1990. I did not know that there was anything different about me, well, yes, I understood and remembered the treatments I was given but I did not allow that colour my view of myself. I was 4, I didn’t know who I was yet, I was still learning.

As with any diagnosis, it is like starting from ground zero. You’ve taken the hit, but you are still here. There are injuries, but we do heal. I was traumatized at sixteen to learn that my short-term memory was wiped out by the radiation. Even today, I struggle with finding employment that understands my memory loss. It’s honestly not bad, but in a world where it expected to be perfect in every aspect, there are issues. I volunteer with the local hospital and I am always looking for new ways to help out. I live at home and do get support from our provincial government and I have a great personal support worker.

I do not allow my disability nor sickness define me and I believe this is crucial for anyone who is diagnosed. I am a two time college graduate: I have diplomas in Advertising and Medical Office Administration. These were achieved through long hours of studying and the support of my family, friends and the support of my professors.

All I can ask you to do is be a parent, a friend. There is no instruction manual on how to live life. You are given instructions on how to live with the apparatuses that you may acquire through the treatments but there is no clear cut right or wrong way to live. Set no limitations. You will discover the limits only through doing. Stimulate the senses for your son, one way or another, he will experience them. Live life to the fullest. As for yourself, do not beat yourself up. You must allow yourself patience, understanding and self-care. We are better when we are cared for. My dad and I do enjoy the occasional Rum and Coke, my Mum and I treat ourselves to weekend getaways.

Can I recommend the mAss Kickers Foundation? You can find them on Facebook. It was established by a friend of mine who is a Physical Therapist turned patient. It is a great support group for patients and caregivers.

I offer you my best wishes.

Fri, Jun 14 10:10pm · Pineocytoma and age in Brain Tumor

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.

Fri, Jun 7 12:21pm · Pineocytoma and age in Brain Tumor

I am a medical administrator and media specialist. I am also a survivor of a pineocytoma. The information that I have reviewed states that these types of tumours are found in adults. I have been researching occurrences of pineocytomas in children. I was diagnosed three months shy of my fourth birthday.

I am curious about the quality of life that others experience and experiences in general of children who are now adults.

Thank you for your consideration.