Thursday, October 9, 2014

'The ticking time bomb that split my world in two'

About a week ago me and a man named Ryan Brooks had a thought-provoking conversation on my Facebook wall.  I had just shared my latest blog entry 'The margin of error'. He commented "I always find your posts extremely interesting. I had a bleed in the brain stem which has left me with double vision. This is how I see now."

That is not your every day Facebook comment but I knew the visual phenomenon he was talking about of course. As I'm always open to learning about how other people deal with visual brain problems, I asked him whether he wanted to share more about what happened to him. He was prepared to do so and I am happy for it. Even though our histories are different (developmental vs cerebral incident), we are talking about closely related visual issues and symptoms. Thank you for sharing your incredible story, Ryan!

I present to you, Mr. Ryan Brooks.

Part 1
RYAN: "I am 40 years old. I live in Newcastle NSW, Australia. I was an occupational health and safety manager in the mining industry and traveled the world to places like New Caledonia and New Guinea to name a few. I had only been home for eight weeks when the incident happened. Over a period of three months prior to the bleed I had experienced three separate dizzy spells and racing heart episodes but only lasted for about ten minutes. I attributed it to maybe anxiety due to my stressful job.

The brain bleed happened on the 25th of June, 2012 at 11.15AM, I woke up feeling great and drove down to a cafe on the beach for a coffee. As I walked down the beach to the cafe my vision started to blur and I felt a strange buzzing feeling at the back of my head near the base of the skull. I put it down to still being half asleep. I ordered a coffee and sat at a table outside watching the surf. The buzzing started to get worse. I started to feel like I had butterflies in my stomach and felt increasingly faint. I got up to go to the bathroom to wash my face. As I got to the door... Boom. Suddenly I felt as if pins and needles were penetrating my face. Down my left arm and leg I felt numbness as well as pins and needles. All this combined with a feeling of complete disorientation. I managed to stumble back to the front counter and said "Call an ambulance, I'm having a stroke." Then I passed out over a table. A short while after, I came back to and noticed no one was helping me. I was in a bad way. I remembered there was no phone signal inside so I got on my hands and knees and crawled out the front door. I laid on the path, rang my sister and told her what had happened and for her to call an ambulance. The people at the bar told my sister that they thought I was a drug addict having an overdose. My sister went absolutely ballistic. The ambulance arrived 20 minutes later and off to hospital we went. After some brain scans the doctors realized that I had a bleed in the upper mid brain, which is part of the brain stem. More conspicuously, by merely looking at me, they could see my left eye was turned in so hard towards my nose you could barely see it. "

Ryan and his daughter

 Part 2
"The official diagnosis was a cavernous malformation. In plain English this means that a blood vessel wasn't formed properly at birth and it took 38 years to wear out and rupture. In other words, a ticking time bomb."

MICHAEL: After the incident and the diagnosis, did they do something about that blood vessel?

RYAN: "They did an angiogram and injected ink into my brain which basically gave them a map of all the blood vessels in my brain and of the problematic area of vessels in particular. They didn't do anything because the brain area where it happened is very complex. The vessels in that area of the brain stem are the size of a strand of hair. Fortunately they were not arteries. Doing something to 'fix' it would entail too much risk. An intervention might kill me or give me a major stroke. Instead we opted for yearly brain scans. There's no guarantee it won't happen again."

MICHAEL: How did things proceed from there on out?

RYAN: "After four initial weeks of rehab for partial paralysis down my left side everything started to get back to normal. Sort of... Concerns regarding double vision as a result of the bleed and nerve damage remained.

MICHAEL: Can you describe your current visual situation?

RYAN: "The official definition of the visual dysfunctions caused by the brain bleed goes as follows. Bilateral asymmetrical superior oblique paresis, cranial nerve paresis with convergence retraction nystagmus and some myopia in the left eye. But I would like to try and explain what that really means from my point of view.

From the outside my eye alignment looks normal other than a slight turn of the left eye.  Yet from the inside that's a different story. When I look straight ahead the image of my right eye looks pretty level but the image of my left eye is on a 45 degree vertical angle.The left eye also has very bad torsion.

When I tilt my head up and down the torsion becomes worse.  I have vertical up gaze palsy and so when I try to look up my eyes wiggle. Notwithstanding, when I tilt my head slightly to the right it pulls the torsion nearly square. In that moment my brain relaxes because it almost feels like I have normal and steady binocular vision again. Sadly I can't sustain the binocular posture. It's like a stare and after five seconds my left eye starts to drift.

When I turn my head left and right the images split up and down so I have to patch my left eye. It is very hard after 40 years of normal sight to now have two separate images that 'do what they do'.

When I walk without the left eye covered, the image coming from that eye bounces. So when using my right eye, with my left bad eye covered, the eye's movement compensates for any head movement. The image stays stable and straight (proper Vestibulo-Ocular Reflex). On the other hand, when I close my good right eye and only have to draw on my left eye, the image inadvertently moves up and down following head movement (compromised Vestibulo-Ocular Reflex). Not only does the image move up and down, but it also tilts because of the torsion. It's quite nauseating and throws my balance out. If I walk with only my bad left eye open,  it feels like I'm walking across a very steep hill. The image just bounces around inconsistently.

I have also noticed that the color isn't as good in my good right eye. At night my right good eye doesn't see as well as my left bad eye. Everything is a sort of tinted darker when looking through my right eye.

When I close one eye, my vision feels quite normal. although I had to get used to the difference in depth perception. At night, when there is little light, it feels like my vision is back to normal which stops the headaches. That's the only time my brain isn't fighting to get properly aligned binocular input. Then I can relax.

Considering all the above, using my vision is a very fine balancing act."

MICHAEL: How do you make these example images? Do you use an app?

RYAN: "You are actually the one who inspired me to investigate the internet and thus coming across the apps to help explain what I see to other people. These are the two apps. My Doctor was very impressed with the idea of taking photos of what I see and simulate what I see as I move my head into different directions. The images shift when doing so. This way he can see exactly what I see."

MICHAEL: What kind of treatment have you been getting or participating in?

RYAN: "I have been seeing a strabismus specialist in Melbourne at the Private Eye Clinic by the name of Dr Lional Kowal. I had VT for 12 months. While doing VT I was also going to Melbourne every three months for examinations. The VT pulled my eye nearly back to its normal position but the double vision remained.

After that initial year of VT, I have had five correctional surgeries but none have been successful due to damage to the 3rd, 4th, 6th, 9th and 10th cranial nerve. Every time a surgery was done it had a negative effect on either the vertical or horizontal relative positioning of the images. Unfortunately after five surgeries, two of which were to undo previously performed surgeries which had made my double vision worse, I am back to square one."

MICHAEL: I'm just thinking out loud... You had the incident in June 2012. Then you had one year of Vision Therapy aka Visual Neurorehabilitation. That brings us up to August 2013. So you must have had five surgeries in one year? How did that go? You seemed to be making VT progress, albeit slow. Who proposed the surgery? What did the Doctor tell you about its effectiveness, risks and possible outcomes?

RYAN: "As the double vision wasn't disappearing mainly due to the torsion aspect of my case, the Doctor or Neuro-Ophthalmologist suggested surgery. They explained the risks. He was confident he could give me an improvement.

The first operation was performed on both eyes and made the double vision worse. Five days later that surgery had to be undone.

Another three months later I had more eye muscle surgery on both eyes while being awake using only the use of anesthetic drops. They placed a black letter T on the ceiling and also on the wall in front of me. He started with the left eye. Cutting and manoeuvring the muscle a millimeter at a time. Then he'd wash out the eye, take the eye clamps out and tell me to look at the T and ask if there was any difference. Then he'd sit me up and tell me to look at the T on the wall in front of me and ask whether there was any difference. My response was 'it has adjusted slightly'. So back down for more adjusting. This process went on thee times until he said he couldn't do any more. He stated that if he overstretched the muscle it was irreversible. Next we repeated the same process for the right eye.

It was an extremely stressful experience. I could hear my heart racing. I was boiling hot due to the lights and surgical blankets. To be honest, after you have had your eye ball cut open, the eye muscles cut  and then flushed out with water, the mix of blood and water makes your vision quite blurry. So any indication of what I was seeing was compromised and not really accurate. My eyes kept drifting as my muscles were cut, my vision was blurred and the environment was extremely stressful.

A week later after letting my eyes recover a bit the double vision was worse. Another week later I went in for surgery again in an attempt to undo things. Under total anesthesia this time.

Four months later, one more surgery was done to do some slight tweaking. I was completely under for this one. Whatever the result was, I was going to have to live with it."

MICHAEL: You said 'I am back to square one'. Do you feel the surgeries were just a useless exercise or would you say it deteriorated the situation? I'm asking out of genuine curiosity, not because I myself had a very bad experience with strabismus surgery.

RYAN: "Now it is more or less back to where it was after the brain bleed, although a little different. Looking back I'm glad we gave it a try because now I know that at least we tried. I put my trust in my Doctor and we came out the other side not having gained but not having lost much either. He was a wonderful Doctor and only charged me for the first surgery. All the other surgeries he put through my medical fund at a significant price reduction. That was an incredibly kind gesture and showed that he was more interested in my case than in my money. On top of that I was extremely fortunate to have wonderful friends and family who organized a charity events such as a dinner party, an auction and a golf day. They ended up raising enough money to cover my surgeries, anesthetist, flights, accommodation, check ups, glasses, lenses, ... That all amounted to 30.000 dollars. If they read this, I want to thank Brett & Gail Purcell, Nathan Palmer, Tim & Macushla Spencer, Chad Edwards, Leeanne & Jeremy Symes and many other friends and family members who were involved. I had been 14 months off work so without this bunch of phenomenal friends my treatment would definitely have been cut short. I'm immensely grateful to them all."

Part 3
"Nowadays I'm using a tailor made contact lens that looks normal but really isn't. The outer edges are clear so you can still see the colour of my eye but the area covering my pupil is completely blacked out. I had to have my pupil measured so it looks cohesive with my other eye. This means that I am basically blind in my left eye when I have the lens in. Well, not completely blind... I still get peripheral vision from my left eye as the dot on the lens is a little smaller than my pupil and pupil size is variable depending on light conditions. Therefore, I still wear my glasses.   When I'm not wearing my glasses, I have learnt to ghost the images of my left eye but after a while this gives me head aches. So back on go the glasses! Looking at me you couldn't tell anything is wrong. However, without my blacked out lens and my glasses the double vision still gives me constant headaches. .

In general, my life has changed considerably following my accident. I no longer work in the mining industry. I now work as a disability case manager and spend much more time at home with my beautiful daughter."

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