My journey with Chiari Malformation and syringomyelia

“Take a pain pill and come to work” I was lying in bed with hot charcoal grinding the bones in arm. It was winter and whenever it gets cold all I want to do is die. I realised for the first time in over a year that no one was ever going to understand the amount of pain that I carry in a body that otherwise looks fine. I crawled out of bed because bills don’t care that you’re ill and dragged my ass to work where I had to smile at co-workers and sound uber excited on the phone to clients. Getting out of the house means having people tapping me on my shoulder, doesn’t matter how light the tap is, it sends my shoulder and whole arm on fire.

How it started

January 2015:  I came down with a dry cough that didn’t really feel serious at first. I had a slight fever but had no pain. I tried every cough mixture that my usual pharmacist said was strong until the fever got to the point that I would spend hours in the bath tub trying to cool myself with cold water. I had never felt so hot in my life! I went to the doctor and he sent me to have a chest x-ray which came back positive for pneumonia. I went on antibiotics for a week and the fever went away but the cough carried on. In the second week there was now a sharp stabbing from the right side of my chest into my right arm every time I coughed or sneezed. The stabbing felt like a hot thick needle was being jammed right through my arm. I lost weight, not in a good sexy way. The stabbing now became continuous pain and my arm, shoulder and shoulder blade was transformed into a horrendously painful furnace. Normal handshakes became a painful experience. I couldn’t go into elevators or tight spaces where I was likely to be  rubbing shoulders with people. I dreaded leaving the house for fear of meeting an over-excited friend who would hug me. Even a baby touching my arm made me want to cry.

Thoracic Outlet Syndrome diagnosis

A GP told me that it was Thoracic Outlet Syndrome (TOS) without a doubt. I saw 2 very expensive physiotherapists who swore they could sort it out. One wrestled with my arm and I thought she was going to break it and she only made worse. I paid her her very high fee and moved on to the next one who said he was appalled that the first physio took an aggressive approach, he said it really was TOS it needed very gentle massages and some exercises that I was to do at home. After that I would be good as new and he tapped me up and said that would help with pain. I did all he said I should do and he did everything that he said was needed and still the pain persisted. I paid him his very high fee and went home to nurse my pain.

Chiari diagnosis

The GP that had diagnosed me with TOS prescribed some medication that seemed to tame the pain a bit. It never really went away but I could function. I then went to another GP who sent me to a neurosurgeon and he was convinced that it was Arnold Chiari Malformation. He then sent me to a hospital where they did an MRI and it came back positive for Chiari and a cyst in my spinal cord that was sitting on the nerves that go to my arm, hence the pain. That condition, the cyst (syrinx), is called syringomyelia. I never thought I would ever have to learn such big words and the words being conditions on me!!

They first had to test if the syrinx was being caused by too much pressure in my head. To test that they had to drill a hole in my skull and then put a thing that looks like a bolt in my head then connect it to a monitor. I was supposed to be like that for 3 days and I could leave my bed or move much. For the first time in my adult life I had to be bathed  and had to go to the loo in a bed pan. It was a humbling experience that taught me a lot. After the second day they felt that the pressure in my head was fine so they had to move on to removing a bone from the base on my skull in order to create more space for cere-brofluid flowing from the brain into the spinal cord. They left the syrinx in there. They said that the damage that has been done to my nerves is permanent and I am likely to spend the rest of my life in pain ans in need of pain medication.

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The next step after they found out that the pressure in my head was normal was to have decompression surgery. This is where they opened up the back of my head and remove a piece of bone from my skull in order to make way for brain fluid to flow properly into my head. They put a patch over the opening and closed me up. This operation was the most physically painful thing I’ve ever endured. They wouldn’t give me morphine so I suffered for about 3 days. I couldn’t turn in the bed and nurses had to help me. Not all of them were nice so the post-op experience was hell.

After a while I was able to turn, get up on the bed and eventually I could sit. I needed to have my head supported most of the time but I was doing great. As soon as I showed them that I could walk, they let me out of the hospital. I couldn’t bend or make quick movements for about a month and a half. After all that I was fine. My scar is barely visible. My surgeon did a great job. My family and friends made me feel loved and helped with my healing. The scar itches a lot at times. The unfortunate thing still is the pain in my arm is still bad if not worse. They warned me that this might be the case. The op was to prevent possible paralysis in the future. I remain hopeful that they’ll find a way to tame the pain without pills because I hate them. For now, I’m just glad to be alive.



What is my new normal?

  1. I live in pain 24/7 even with pain medication. I have tried different combinations and the best ones decrease it a bit sometimes but it’s there ALWAYS.
  2. I can’t work full time. Try explaining to any employer that you really really need to go home because your arm is killing you when the arm is not swollen and you look fine. They may let you go once but the 3rd and 4th time they are worn out by it.
  3. Socialising is difficult. You get to a party but 45 minutes in you’re in too much pain and have to go home. good luck getting a 3rd and 4th invite.
  4. I have to deal with medication side effects. Weight gain, skin issues, constipation or diarhoea, fogy brain, fatigue, depression…and the list goes on.

Life changes and the biggest challenge is to be able to welcome and accept the changes then shift gears and be ready to go again. I’m still trying to shift gears. It’s tough but it can be done!

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