Cerebellum On Fire

a journy through CNS (neurological) dysfunction

[cerebellumonfire]

Basic Needs

I realized something about myself today. The only thing I really resent in life is any kind of design on my future or for my time that is planned without my express consent. That’s the primary reason why this disease is going to be an ongoing challenge for me. It’s got plans that I’m not privy to, so my freedom in impinged.

I'm not shy of responsibility or obligation, I just resent obligations consuming my time that are not of my own design. This is for my own sense of happiness and well being. It’s called having firm boundaries. It is a basic need and coping mechanism that I am both okay with and well aware of.

My parents had an extremely co-dependent and dysfunctional relationship. One parent was narcissistic and abusive. I had to fend for myself constantly, I had to hide and I also learned to depend on no one. The result is a fierce need for space and autonomy in order to remain happy and safe. In my world there is almost no such thing as too much space. Space = freedom.  Oh, and I also need Wifi.

[cerebellumonfire]

Hot and cold?

For the last month or so I haven’t been able to feel hot and cold on my tongue. I actually didn’t realize this was the case until after I had burned my mouth a few times. Three times with coffee on my way into work, and once with hot pizza. The day after my mouth or throat felt odd. The pizza was what finally clued me in. I burned the skin on the roof of my mouth to the point of blistering. I could feel skin hanging down with my tongue. A closer inspection in the mirror confirmed what was going on. Now I test my coffee against my wrist like a mother gauging the temperature of milk for her baby. Strangely this went away mid-last week. I thought that was the end of it.

Now I’m sitting in Starbucks trying to warm my hands on my coffee, first the palms then the backs. Guess what? I can’t feel hot on the tops of my hands. There is no warmth to be had there, as far as my brain is concerned. I now have a very complex relationship with hot and cold.

[cerebellumonfire]

Even though we now know that it’s my brain malfunctioning, I still went through with a 24 hour EKG yesterday administered via Holter Monitor. This is basically a bunch of electrodes affixed to your chest and a small monitor hooked to your belt. The monitor records any irregularities in your heart’s electrical activity.

I ate, slept and lived with this device attached to me then went for a stress test this morning. This meant attempting to walk and run on a treadmill with continuous vertigo. Fun times and road rash. 

[cerebellumonfire]

Neuro Referral

Apparently when you have a bunch of spots in your brain you make the shortlist for the Neurologist pretty fast.

The ENT/Neurotologist’s office called today and said they had already made the referral to a General Neurologist. I asked when I could expect to hear from him, they said that this Neurologist apparently triages his own patients. Truth be told, with our “great” Canadian healthcare system, I expected to wait a month or three to see someone. Instead it turns out that I have an appointment in just over a week on the 13th. I’m not sure how I feel about this yet, it kind of blew my doors off. 

[cerebellumonfire]

My MRI Findings

“Findings

A 1.6 cm ovoid high T2 signal intensity lesion is seen in the right centrum semiovale. Multiple tiny additional lesions are also seen within the subcortical and deep white matter of the frontal and parietal lobes bilaterally. Several pericallosal lesions are present. 

No posterior fossa or temporal lobe lesion. The IAC’s are clear. No acoustic neuroma or cerebellar pontine angle lesion. Allowing for minimal artifact, there is no cervical cord lesion and the central spinal canal is well preserved.”

“Impression

Multiple cerebral white matter lesions as described. Their appearance and distribution are strongly suggestive of MS.”

There are more spots than can be seen here, but you get the idea. After reading the report I thought of a more appropriate song for the MRI… a friend played it for me once - Tiny Monsters (by Puscifer). The skipping-ish electronic effects also sound a little like the MRI.

Listen to the song below until at least 2:15!

https://www.youtube.com/watch?v=_QUu44ZK2zo

[cerebellumonfire]

Well, I brought home a CD of my brain today which is pretty cool. I spent the evening looking at it because I know something is not right.

Yes, I know. I’m not doctor and I don’t know how to read an MRI. I do however know how to look up MS radiology differential diagnosis on Google. Just looking, honest. I’m not a self-diagnosing kind of person. I’m ruled by the land of research and logic, so I reserved judgement. I waited a day and asked for a printed copy of the report. Turns out I’m not that bad at reading MRIs... or perhaps (despite what some think) I actually do have a clue what’s going on inside of my own body. 

[cerebellumonfire]

Techno MRI Symphony

Before going for my first brain/spine MRI a coworker mentioned I should listen to a CBC podcast called “I Hear Music in the MRI.” I did and it was pretty interesting.

Truthfully and MRI does sound a bit like a rhythmic techno racket experience, albeit not as coordinated as I would expect. It had a somewhat rhythmic, pounding and mechanical sound but was also somewhat sterile sounding. The technician gave me headphones to listen to, so I went for classical. 

It took somewhere between 30 and 40 minutes. Between the loud clatter, clanging, banging, the piano and the violins, I fell into a state of warm fuzzy semi-consciousness. What the heck, I’m inside a giant magnet, why not pretend recharge my batteries?

[cerebellumonfire]

Pre-MRI metal and eyeball considerations

Nerd Alert (only the truly nerdy should read on):

Before an MRI appointment they ask you about any metal, tattoos, pins, shavings or shrapnel you’ve ever had in or near your body. It’s a very informative 10-15 minute checklist.

My dad works around metal but I had forgotten when I was 19-20 I got metal shard in my eyeball from cutting keys in a hardware store. One eyewash later I was fine, but apparently this warrants an orbit exam (eyeball x-ray) prior to MRI even if it’s been years. 

You can have pins, metal and even an IUD and go into an MRI because these items are, for the most part, fixed in you. Your eyes however are more liquid than you think and a metal shard can pop right out of your gelatinous eye fluid from the giant magnet that is the MRI (gross right?)

Pretty darned cool from the science end of things. The Slow Mo Guys to the rescue for a scientific learning moment:

[cerebellumonfire]

Preparation for Oddity

So I decided to go ahead and do the privately paid MRI (and to also get a copy on CD). This should be interesting. It’s weird to look at your own brain and requires a little preparation for oddity. So, I did a little artistic research on oddity and the uncanny. 

http://mysearchformagic.com/2013/02/02/the-uncanny-ronchini-gallery/

[cerebellumonfire]

Even though we suspect the problem is my tiltedcerebellum, Doc did the Epley (BPPV canalith re-positioning) maneuver to see if my extreme balance issues are a combination of 2 things, central + peripheral. Unfortunately this didn’t help. 10 minutes later I could barely stand let alone walk with a cane. 

In the cab halfway home we hit the bridge and the world blew apart. Everything started rolling violently at double speed. The cabby had to walk me to the lobby of my condo until I could cling to a wall for support. Head turns result in a violent quickening no matter what direction. I’m happy to say I made it to my condo before yacking which appears to be an unfortunate acquired hobby. It is not Benign Paroxysmal Positional Vertigo (BPPV). 

Image from: "[134] tilt" by dagligabilder

[cerebellumonfire]

ENT / Neurotologist

Visited the new ENT Otology/Neurology Doc yesterday to see if the problem really is related to my ears (the most common assumption). He appeared fastidious, thorough, and brilliant. He also did a barrage of tests: hearing, neurological, coordination/gait, balance, positional, eye-tracking (while flicking my head quickly to each side watching my eye movement for nystagmus).

Note: None of the Walk-in clinic or ER Docs were able to trigger this; however, he got it going quite profoundly! I could actually feel my eyes jumping and jerking. This also happens at home when I lie on either side.  This was so strong the first time it occurred I thought my whole head was twitching in time to my heart beat. (Not my eyes in this clip, couldn’t get the video of it).

See my previous post Etiologies of Vertigo.

With positional vertigo (BPPV or a crystal in the ear) nystagmus is episodic. Further, the Dix-Hallpike test should show strongly towards the positive ear. The problem this time is, my eyes jump intermittently (lying on either side when supine). The specialist stated they also don’t stop bouncing after 30-60 seconds as they should if it were BPPV. I’m told currently that my eye movement slows considerably, to almost imperceptible, but keeps bouncing. Apparently the direction and beat of nystagmus often provides a clue as to its origin. Basically my eyes jump continuously when I’ve got the full-on spins.

Right now I can’t walk without staggering (ataxia) or walk heel-to-toe without falling. I had a negative Romberg's test which (since I’m not drunk) suggests my balance problems are not peripheral. This evidently warranted an immediate MRI referral. The ENT urged me twice (once during and once after the appointment) to consider paying for the MRI privately to expedite it. That’s about $900 Canadian. Ouch.

[cerebellumonfire]

This is what my brain

thinks is happening 24/7. The sensation is constant (not occasional). After the first few days it became severe. It continually feel’s like I’m tipping or rolling to the right. At first I couldn’t close my eyes and remain sitting upright. The sensation is strongest while I’m in motion. At one time even moving a hand or foot made me sick and I spent anywhere from 4-6 hours a day for weeks over the porcelain. 

It is slowly becoming less severe, every few days I can move a little more without getting sick. I live on antiemetics, going to work like a zombie when I can move and working from home on days I can’t. Less clinging to the porcelain also means less clinging to my (temporary?) cane. 

[cerebellumonfire]

Etologies of Vertigo

Through this experience I’ve learned that many people experience vertigo in their lifetime. Typically it is short-lived or episodic.

As far as I can tell it is categorized into two primary origins:

Peripheral (vestibular or ear related) or 

Central (Central Nervous System = brain, spine or even brain-to-ear). Occasionally vertigo can be involved in heart-related issues.

Peripheral causes

Peripheral vertigo is the most common origin, responsible for the vast majority of Vertigo cases. This includes BPPV or calcium crystals that break off in one of the fluid-filed canals in the ear causing episodic spinning or nausea for a few minutes at a time which is provoked by head movement. This type is often cured in 1 treatment (80% of cases) using body positioning maneuvers to relocate the crystal. A physiotherapist or physician with relevant training can usually do it. General Physicians see a lot of BPPV and other peripheral issues such as labyrinthitis, vestibular neuritis and Meniere's disease.

Central causes

Central causes involving the CNS or central nervous system are rarer, unfamiliar/unrecognized and sometimes harder to spot. Signs can be mixed, subtle, untested, overlooked by physicians because the majority of cases are of peripheral origin. Mine was missed by many different physicians. 

Additional reading on Etiologies and Evaluation:

www.ncbi.nlm.nih.gov/pmc/articles/PMC3096243/

http://www.aafp.org/afp/2006/0115/p244.html

http://www.nhs.uk/Conditions/Vertigo/Pages/Causes.aspx

Disclaimer: I am not a medical professional. I do not offer any kind of advice. These posts are my own general musings to cobble together my own limited understandings via random internet research and may be inaccurate, incorrect, or overly generalized.

[cerebellumonfire]

Did you know canes are for balance?

I’ve had numerous passers-by ask me what I did to my leg. It’s interesting that most people think canes are for physical injury. I did too until I learned that canes are primarily for used for balance issues. It makes sense when you think that casts, crutches and braces are usually used for injury.  

I used to love watching House MD when it was popular because although it was a reality stretch, the humor was cerebral. It never occurred to me at the time why and how a cane is properly used. 

Canes as a balance aid really aren’t meant to be leaned on. Any P/T will explain this, along with the notion that they are usually used opposite to the affected side unless both sides are affected. PT’s don’t like to see people leaning heavily on their canes because it causes alignment issues and back, neck and shoulder pain/strain. Not only did Hugh Laurie lean on his cane most of the time, he also uses it on the wrong side. Apparently there was an episode poke fun at this when people started to point it out. 

[cerebellumonfire]

C is for Cane

It’s something I never really thought about until I needed one (I’m fairly certain it’s temporary). I called around, then went out this afternoon and got one. 

Frankly I was scared of having another episode of falling in the street, better safe than sorry. I found one at the grocery store pharmacy. It’s metal and all-black and is quite strong. Plus, doesn’t have one of those stupid candy-cane curl handles. I even considered some stylish ones online…

That was before practicality won out and I ended up with a collapsible cane with an non-slip ergonomic handle that I can tuck in my handbag. I’m not even 35 years old for crying out loud. :P

As a rather humorous friend pointed out, I may officially be a liability in extremely unlikely event that there’s an earthquake or a zombie apocalypse lol.

[cerebellumonfire]

Optical and Sensorial Chaos

All busy patterns now feel like this.

Visually, everything is on a tilt to the left, but I’m on a tilt to the right. It is ever so slight. Also it’s oddly accompanied by the sensation that I’m falling whenever it’s night.

- No joke!

[cerebellumonfire]

Patterned Carpet is Evil

Apparently your balance and position as processed by your brain is composed of 3 main systems:

1. Your ears (3 semicircular fluid-filled canals each side like a mini level system that provides the x, y & z coordinate position of your head).

2. Your vision. 3. Body feedback (joints, muscles etc. = Priopreception).

When one of these systems doesn’t work right, the others compensate. According to a vestibular therapist, two are damaged in my case (ears and proprioception). My eyes try to follow every line in a busy environment and they can’t do it all at once, so my balance goes and I instantly get dizzy, tilt, and begin to tip over.

This is why your patterned carpet makes me want to vomit.