Martyn Daniels - Stroke resulting in Wallenberg's Syndrome

Hi,
I'm 43 years of age. Earlier this year in February I went to play squash after 4 solid days of decorating the ceilings of our new extension. After 10 minutes on court, I felt a tingling sensation in my left foot & very dizzy. I played on for a bit by holding onto the wall to keep myself upright but decided to stop playing when I felt sick. My playing partner gave me some water to drink - as soon as the water touched the back of my throat, my throat started to contract, causing me to gasp for breath. I laid on the floor in the recovery position hardly able to speak & was taken to hospital.

It took the hospital 2 days to suspect I'd had a stroke at the base of the neck / cerebellum (confirmed after 5 days following MRI scan). Initial diagnosis was that I had an ear infection.

When I arrived at the hospital, I still felt sick & the world was spinning (I'd be looking down at the floor but my brain was telling me I was looking at the ceiling, hence the easiest option to avoid the sensation was to just close my eyes). Had raging toothache on left side of face.

Physical symptoms caused by stroke were as follows:

• Unable to walk
• Loss of balance (kept leaning to the left) - ataxia
• Vision in left eye impaired - pain in eye & around eye socket
• Horner's syndrome in left eye
• Pain in left side of face above the mouth
• Could only speak in hushed tones
• Nose constantly bunged up (I've never experienced so much mucus up my nose & I didn't even have a cold)!
• Unable to sneeze
• Numbness down right side of body - could not feel pain or heat
• Pins & needles in left hand
• Permanent neck pain at the back of the neck
• Palette affected - food tasted more acidic
• Stiffness in left knee
• Light spraying of water on right hand side of my back caused feelings of intense pain

Due to the unusual nature of the stroke, I was visited by student doctors for them to identify the cause. One wrongly concluded I had MS (which, I have to admit, did make me sit up in bed)! The student doctors performed a number of tests on me but an obvious one they failed to perform was to ask me to sit up straight on the side of the bed. I couldn't do it because I kept falling to the left - this would have provided them with a significant clue as to what was wrong with me.

After about a week I was transferred to the Stroke Recovery Unit. Noted a poster there saying that stroke patients must be given a drug called Thrombolysis within 3 hours to alleviate symptoms & aid recovery. From my perspective this was impossible - I initially received a wrong diagnosis, there was no neurologist available in casualty or the stroke unit & the MRI scanner is only operated Mon-Fri during working hours. Until these deficiencies are addressed, hospitals will struggle to reduce to the number of disabilities inflicted by strokes.

Whilst in the stroke unit I asked the registrar when he thought I would be able to return to work. He advised that most people who are admitted to the unit never return to work! A case of needing to improve his bedside manner. After 3 weeks suffering from a neurological condition, I had yet to be seen by a neurologist. Requested a meeting & saw an excellent neurologist who provided a lot of insight into the condition.

I was released from hospital a few days later. Began regular physio. Neck pain intensified. Saw neurologist who recommended second MRI scan. Result was that clot was still there & would likely remain there for the rest of my life. Not felt to be a problem as the other 3 arteries could pick up the slack. Neurologist advised that most recovery occurs during first 3 months - he subsequently advised that it was unlikely I would ever play competitive sports again. Time seem to go in slow motion. This was the worst news I'd been given following the stroke. Decided that I'd just have to aim to prove him wrong & push the body as I've heard that degrees of recovery can still take place up to 2 years following a stroke.

Six months on, status is as follows:

• Can now walk, albeit left knee is still stiff for no reason & gait is thereby somewhat stilted.
• Still suffer from ataxia / dizziness.
• Left eye does not like talking to the right eye - tend to close it a little to lessen discomfort. Still have pain around left eye.
• Still suffering sensory depravation on right hand side & pins & needles in left hand.
• Neck still suffers stiffness.
• Nose is still somewhat blocked - when running have to breathe a lot through mouth.
• Attend a gym 3 times a week - this has proved very useful in improving mobility & strengthening my neck muscles, resulting in a reduction in neck pain.
• Have started running around a track in an effort to improve ability to move forward in a straight line. This has also helped & can now complete a circuit without straying into other lanes.
• Will return to work next week on a phased return basis. Job is mainly desk based - primary concern is my left eye having to use a computer screen for extended periods.

Other points of note from experience to date:

• When you're pushing yourself along in a wheelchair in a supermarket, expect people to cut you up as you're below their normal field of vision.
• Don't slam your walking stick into the ground when walking - it gave me RSI.
• Once you start using a walking stick, you realise just how many other people also use one.
• Getting a good nights sleep in hospitals is rare, especially when you have one poor chap, who's hard of hearing, perpetually asking nurses for the date, time & wanting to go to the toilet. He'd shout his questions & when the nurses did answer, they'd shout back an answer so he could hear them. Therefore, either his questions or their answers would wake you up!
• Try to laugh at experiences such as the chap who suffered from dodgy guts & consistently broke wind, seemingly with a loud-hailer.
• Realise there are stroke patients worse-off than you. A number of the elderly patients I encountered had difficulty communicating, resulting in their effectively being trapped in their bodies. It was cruel to see & a sobering thought for later life.

Martyn Daniels

Thanks to Martyn for sending in his profile. Anyone else who would like to share their story can send it along with a photograph (if you're not shy!)

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