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Patient Stories - Gertrude Kitty Part 1

In the Beginning

When I was 43 I was me.When I was 44 I was different. More advanced? Faster? Cleverer? More knowledgeable? No.

It’s hard to identify when symptoms first appeared. My problems rose from congenital defects so maybe I was all wrong from the beginning.

As a child the park playground scared me – the swing, the see saw – I felt sick, I felt like the ground was sweeping up to grab me. As an adult with my own children – I felt the same.

Passing my driving test was one of my biggest achievements. Did I struggle with parallel parking because I couldn’t turn my head sufficiently? Or was I just rubbish at parking?

My first two pregnancies are trouble-free – even better nearly pain-free – did not feel contractions until baby ready to arrive. First daughter born in two hours. First son in under an hour.

At the beginning of this recount I was a lecturer in an FE college. I was good at my job, I enjoyed it. Never ill, never off work. Never in need of even a paracetemol.

Change

Headaches, poor concentration, stiffness, dizziness, heavy painful limbs. Began losing balance, every noise jarred in my brain. When I looked up to my white board I felt sick dizzy. Lost concentration, students started playing up, too tired to mark assignments or plan lessons in the evening.

Fall pregnant with third child. Very happy but exhausted; have a constant dull headache. Crick in neck. Don’t take painkillers because of pregnancy. Pain becomes second nature. Need Caesarian. Able to go home day after – my head pain greater than Caesarian pain. Wear a wholly hat outdoors, indoors, winter, summer because slightest draft worsens head pain. Feel constantly cold. Return to work after six months. Experience pins and needles in feet and up arms. Suffer dead leg. Dizzy, head rush, feel like I’ll collide with the floor. Horrible spasms between shoulder blades. Pain affects my patience with students. Carrying assignments around or handouts is hard, they feel like blocks of concrete.

Begin missing days off work. Diagnosed as depressed.

Fall pregnant again. Feel ill, know it’s not the baby. Have shoulder pain, sinus pain, legs feel heavy. At swimming pool week by week I swim less lengths. All symptoms put down to hard pregnancy. Return to work after maternity leave. First day is a struggle. Can’t concentrate in Curriculum Meeting. Every noise vibrates in my brain. Very shaky. Moving my sluggish body around is exhausting. I stagger during lessons, I lose the thread of what I’m teaching. Work is horrible. I feel isolated from my colleagues of ten years. To them my sickness doesn’t make sense. I’m in for one day, away for two. In three days away for a week. My moral is as brittle as my body. I worsen so I hand in my notice.

“Cervical Spondylotic Myelopathy My Hellopathy”

 

At home most of my issues subside but I have a dull constant headache. Swim most days and think I’m getting older because twenty lengths reduces to nineteen and steadily decease to the point I’m swimming around in a circle.

I power walk the kids to school. We sing The Grand Old Duke of York. We usually get to the playground ten minutes before school. As weeks go by I am confused by how we leave home at the usual time yet hear the bell before reaching the playground. I think I have a virus.

Return to work, school hours only. Two years and not a days sickness. Still go swimming twice a week but when I’m in the water my right arm is unable to move against the resistance of the water. The pain in it is breathtaking. I stop swimming, I presume the problem is muscular. It begins to affect everyday movement. When I mow the lawn. When I raise my arms to get clothes from the wardrobe. I use deep heat and a water bottle. My head pain increases significantly so I take every painkiller available: paracetamol, codeine, ibruprohpen. Every day I struggle with pain, with exhaustion. I don’t want to phone in sick so I hand my notice in.

A year at home, just taking the kids to school, I expect to feel better but I worsen. Every tooth in my mouth hurts, my head pain is staggering, nothing over the counter touches it. I can’t bear noise. The children’s voices. The clock ticking. I just want it to stop. I visit dentist – no dental issues. My eyes feel like they’re about to roll out of their sockets the pressure is so immense. I want to gauge out the pain between my shoulder blades. My jaw pain is so bad I drink liquids through a straw. I visit another dentist, I insist on x-rays – they come back clear, but my face is burning up.

Doctor’s appointment. Without even looking in my mouth he diagnoses trigeminal neuralgia and puts me on a tablet I can’t remember but no pain relief prescribed. I no longer sleep, the pain is too powerful. My mouth feels on fire. A week passes and I can barely lift my head off the pillow. Halfway on the route to pick up my kids from school I find myself sprawled on the ground. Husband takes me to A&E. Doctor seems perturb with my symptoms. Blood is taken and painkillers given. Lay head on pillow and for the first time in a year I feel my pain subside. I want to remain on this bed forever.

Blood results indicate swelling. Then think I had a stroke. I’m admitted to the stroke ward. Three days later I am MRI’d – a brain scan. Brain fine. Incidentally part of my cervical spine was MRI’d. Results show abnormalities in spine. The neural consultant visits. He clumsily explains the MRI – I don’t understand him. The only thing I remember to tell my husband is that I’ll need a colostomy, I’ll be paralysed from the neck down. Patients in my bay come and sit on my bed and can’t believe how such a significant life altering condition could be delivered so bluntly.

 

“Can’t believe how such a significant life altering condition could be delivered so bluntly”

 

Outcome; I’m to stay in hospital till a bed becomes available in the neurological ward at Charing Cross. Over the next five weeks I see very little of my family. I feel low, so low that coping with chronic pain is a battle. Even morphine shots only keep pain at bay for an hour of two. My weight steadily decreases. I feel a gland inside my cheek rubbing coarsely against my teeth. As my cheek begins to swell. I ask consultant to take blood to check for infection. He curtly refuses. I get no more daily visits from him or his team. I am in limbo. My husband wants to take me from Hillingdon to Charing X himself but I’m in too much pain.

A bed becomes available in Charing X. I am ambulanced there. That night, like many previous, I have night terrors onset by the cocktail of drugs previously prescribed. I spend the night rocking on my bed, thinking I’m in Little House on the prairie, crying.

Am due to be operated on today although I have no idea what the surgeons are doing or what the outcome is. The surgeon strides in with his team like Grey’s Anatomy. He cancels my operation due to a severe infection showing in my bloodwork. He can’t understand why it wasn’t treated earlier or why I was sent over in an unoperable state. He explains that if he opened me up my infection would dangerously spread and probably kill me. I feel wretched. I just want to be fixed.

My infection is so rooted I am transferre to ENT. During my two weeks there my face blows up – I’m the elephant woman. My jaw locks whilst semi closed so I am put on a liquid diet. A pain consultant visits me. She looks at my notes and is flabbergasted by my cocktail of drugs. She prescribes Pregabalin which I will be on for a lifetime and morphine. My pain subsides. I am hooked up to IV antibiotics but the swelling continues. I have another MRI, a CT scan, an ultrasound. The infection, although wide-spread, is not concentrated enough for them to draw it out with a needle. It seems the infection began in my cheek, (most probably transmitted by a dentist with unsterilized tools). It has spread to under my teeth; two teeth need to be extracted to treat the infection beneath. At this stage I don’t care what happens. I have to go under general anesthetic because my jaw is locked and there is very little room for the surgeon to work. It took over four hours to get the teeth out. My swelling begins to subside but my jaw remains locked. I am allowed to go home. I have to be completely infection free for a couple of weeks before op. I take oral antibiotics for two weeks. I have lost two stone, when I look in the mirror I see a skeleton, I cannot walk, I am very fragile.

Every day my mobility worsens. I spend nights and days trapped in a chair because my body isn’t responding to my brain. The pain is hellish. I continue to lose weight – I look horrendous, like I’ve had all the life sucked out of me. The kids are terrified. I work hard to be positive. To hug them. To be the real me.

I get neurosurgeon appointment. At long last I will understand my illness. He explains I have a degenerative disease and without the op I will slowly become paralysed from the neck down. I might not even be able to talk. He explains that the operation can’t undo cord damage it simply relieves the pressure from the cord to prevent further compression. He books my op for two weeks time – December 2010.

Wake up from op feeling great. The arm pain, the head sizzling, my shaky hands, all gone. My body feels light and responsive. I have a six-week check-up with x-rays, I happily tell the surgeon how great I feel. He sees that I can’t walk properly due to spinal cord damage and two fingers on my right hand are fixed together, I didn’t care that I had to hobble around with a walking stick, I was well again. A week later I received a letter stating that I was released from clinic. There was no monitoring…or physio…or occupational health referral…the only advice I was given was to keep my spine aligned. I asked about swimming? No, it puts too much pressure on the neck.


Gertrude Kitty’s Story Part 2

Gertrude Kitty – Biography

Gertrude is affected by CSM. She is helping to raise awareness about the disease and support others by keeping a blog about the disease called My Hell…opathy