Oftentimes I experience a very odd feeling. The feeling is the sensation that there is slight pressure numbness wrapping from the edge of the left eye to the back of the head. The end-point is former location of the tumor. The mid-point and most prominently affected area is just above the left ear.
Usually when I experience this sensation, it comes paired with dizziness and vertigo. My eye control issues are much more severe.
I’m not sure what causes this feeling. All I know is that it comes and goes. Maybe it’s a nerve, or maybe the vestibular-system is a little wonky. Who knows. It’s anyone’s guess.
Usually when I experience this sensation I want to lie down on the couch, in a quiet darkened room. Luckily today I have a bit more energy. Maybe that’s a good sign, or maybe I can just tolerate it more.
Here is a running list of blogs/information sources for people that have experienced ABIs or concussions, or have experienced vestbular or balance problems.
I think these links can be beneficial to a wide-array of brain injury sufferers, not just former brain tumour patients like myself.
Discussion forums/support groups:
Acoustic Neuroma Association. Probably the best brain tumour specific online community. However, information is specific to acoustic neuromas.
Neurotalk TBI forum. A kind, compassionate community of ABI sufferers.
Good concussion and ABI resource centre
A good site for swallowing disorders. Please do not attempt exercises on your own.
Vestibular therapy and vision therapy:
(Note: If you suffer from seizures, epilepsy or certain heart conditions, do not try these exercises)
Great resource for vision therapy
Try the vision games at this site
Need help with your meditation technique? See link for tutorials:
Northeast Center for Rehabilitation and Brain Injury. Great and informative podcasts
I think I am generally trending in a positive direction. However, I still experience many difficult days. I’d say I only feel good or comfortable in my own skin only approx. 5-10 percent of the time. This is a far cry from how I felt in the early going, but it still makes life difficult.
On days I don’t feel great, which are in some ways the normal days, I want to stay home most of the time and relax. I try to avoid any thing that will make my symptoms worse, so no TV, reading, chatting, driving, etc. My only refuge is the radio and podcasts. Unfortunately, even these time passers are often too demanding for my brain. I just want to shut everything off.
On the true good days, I actually sort of feel like my old self in a way. I have more energy, and I am a more productive worker. I also am able to enjoy simple pursuits like long walks on the beach, radio/podcasts and the occasional TV program. I suspect that my eye control issues/vertigo are less of a problem on these days, because I am less bothered my rapid movements, and I feel like my eyes are more fluid. Sadly, I am still quite restrained in what I can accomplish and do.
Some days are kind of a mixture. Today, I started off well. But as the day wore on I started to feel increasingly dizzy. Maybe it had something to do with the 2.5hr walk along the beach yesterday ;)! So, after working for 2 hours or so, I returned home and took a nap. I find napping helps with the dizziness and vertigo sometimes.
I’ve noticed a connection, albeit a weak one, between nasal congestion and days when I feel crummy. I find generally, I feel much worse when I am congested. Perhaps I am breathing less or my sinus issues affect my already compromised vestibular system, I don’t really know.
In truth I’ve always felt a little bit off. Growing up I experienced bouts of sickness that would sometimes last for weeks on end. I would also occasionally experience headaches, mild tinnitus and occasional instances of mental fatigue. Although I’ve always been reasonably intelligent, I’ve always had problems reading for an extend length of time, or spending lengthy amounts of time working on homework assignments or complex problems. Likewise, in high-school I took music lessons and I struggled following the musical notation.
Soon I would find myself in university dealing with extreme mental fatigue and problems dealing with crowds and confined spaces. I thought it was just moderate anxiety. However, looking back it was more of a warning sign.
In the late Fall of 2012 my symptoms started to become more noticeable. I started to become increasingly lethargic and nauseated to the point that I’d spend most of my time at home. Thrown in was a 2-3 week period of extreme nausea and vomiting. I avoided vigorous exercise and cut back my work schedule. Driving started to become more and more of a nuisance. As January rolled around I felt marginally better. However, a weekend skiing getaway proved to be more than I had asked for. Soon the nausea, dizziness and headaches were back at full force.
Nowadays I experience an array of symptoms and side effects. My primary issues are: eye control-issues, dizziness, disequilibrium and bouts of vertigo. I also experience problems hearing in confined noisy spaces (bars/restaurants) and have issues with bright lights and stimulation. The eye-control issues make reading, driving, and participating in sports/activities a serious challenge. Occasionally, I will experience severe eye strain and a headache around the eye/nose. Generally, headaches aren’t a serious concern.
On the cognitive side, I find my memory, attention and concentration ability are impaired. However, they have improved a great deal in the past year or two.
My tumour was located in the left cerebellar hemisphere. It was a pilocytic astrocytoma. A pilocytic astrocytoma is a Grade 1 Astrocytoma, which means generally no follow up care is needed if the tumour is totally resected.
I was told that the tumour was highly calcified and that it was creating a large cystic mass. The cyst was responsible for most of my pre-operative symtoms. I’ll get to those in a later post. The calcified nature of the tumour indicated that I likely had it for a long time.
The tumour itself was located in the cerebellum. The cerebellum is traditionally viewed as the part of the brain that is responsible for the coordination of movement and balance. However, some researchers believe it may also play a role in other functions. For example, the neurologist Jeremy Schmahmann describes Cerebellar cognitive affective syndrome as “a constellation of deficits in the cognitive domains of executive function, spatial cognition, language, and affect resulting from damage to the cerebellum.”
I tend to believe that I no longer function at the same level cognitively and I have the test scores to prove it! However, I have no training in anything remotely scientific, so I’m not the one to be blogging about what are and aren’t functions of the cerebellum. All I’ll say is that my attention span and memory is generally not as good as it used to be. I have a feeling that the traditional view of the cerebellum doesn’t entirely explain the challenges I continue to face.
In early 2013 I was diagnosed with a cerebellar brain tumour. I was 22 years old at the time. The subsequent operation went well and the tumor was determined to be benign so no follow up neuro-surgical care was needed. However, unfortunately, I still experience symptoms relating to the tumour to this day. Although my issues pale in comparison to those of many other brain tumour survivors, they still have taken on serious toll on me.
My experience relates to cerebellar brain tumours. However, I invite anyone and everyone to share their own experience on this blog.