In August an MRI revealed I have a Chiari Malformation (type 1), which is a herniation of the bottom part of the cerebellum (in back of the brain) into the spinal canal. At the time I had no idea what this meant, but have since been searching for answers. There is surgery available for Chiari Malformations, involving decompression of the neck and spinal cord, and removal of some bone at the base of the skull, and possibly the top vertebrae, and also possibly “shrinking” the herniation.
At first I was not eager to sign up for this, and the doctors did not seem to think all of my symptoms could be caused by the herniation. My symptoms have changed however since I last saw a neurosurgeon, and I am learning that neurosurgeons in Canada tend to have less knowledge of the mechanisms of the disorder and the range symptoms.
I have spoken to many other patients with symptoms like mine, and other symptoms that were unusual, who benefitted from surgery. The brain is intensely complex, and it is still not known what systems CM can affect. I am unsure at this point how to pursue treatment, but I plan to seek another neurosurgeon consult, and future MRIs. Unfortunately the advanced centers in the U.S. designed to treat this disorder are not covered by OHIP, so I am likely to pursue surgery in Ontario, but as I understand it will be considered “elective”, if I do not develop any secondary problems, such as a spinal cord cyst known as a syrinx, which is somewhat common with CM.
This is some of what my day was like today, and what it is like most days lately:
This morning when I woke up it felt as if I had been sleeping on top of rocks. My neck was so extremely tense, and the headache always hits really hard first thing. It is almost impossible to think of getting out of bed, but I know my body will just feel worse if I continue sleeping. As I sit upright it feels as if my head is full of sand that shifts from side to side as my brain adjusts to being upright. My face hurts. It always does, but it’s like I have to re-adjust to certain things in the morning, like sometimes in my dreams I’m not in pain. I sometimes really want to stay in my dreams. I never feel rested. When I stand on my feet they feel full of pins and needles. My muscles ache, so I move slowly. By the time I start to walk to the bathroom I start to notice the sense of vertigo that comes and goes throughout the day.
Every time I move my head it aches. My ears always feel full, and are often achy as well. My neck also hurts a lot, especially if I’m not careful how I move it. My neck cracks about 20-30 times throughout the day, or rather it stiffens up, I feel the need to stretch it, and then it cracks and I get a temporary relief of some of the pressure and tension.
When I take the dog for a walk I usually try to avoid hills, and I can’t walk very fast or for very long. Sometimes I will unintentionally over-exert myself while walking, and I will begin to feel dizzy, and a lot of pain in my head, neck, eyes, ears and face, as well as my legs and arms which will also start to feel weak, yet also tense up. I then begin to have trouble moving my legs correctly. More frequently lately, I have started twitching involuntarily when I exert myself. I usually find somewhere to sit down for awhile, or else I tough it out and make it home, although by this time I am surely walking “funny”. Sometimes I think people are noticing, but usually people are too absorbed in whatever they’re doing to notice much.
If I try to drive, I always get a more intensified headache. My neck also becomes more tight. I find it hard to turn my head to make the necessary movements and scans for driving. My neck cracks often while driving, and I have to rest my head on the head rest or my hand. Long trips are especially difficult and I have to make a lot of stops. I also get a lot of pain in my legs, hips, hands and shoulders, which can make driving difficult.
I have to got to bed at a decent time every night. If I don’t get 10-12 hrs. rest in bed, I am in more pain and more fatigued, and am more likely to start twitching, have more nausea than usual, and/or have more dizziness and hand tremors.
There are a lot of things I am not mentioning here, however I feel that I have said enough to make a point. I don’t enjoy talking about this. I find it necessary however, since I encounter more and more people who expect me to have a normal amount of energy for a 28 year-old, even after I tell them I have a neurological disorder.
I have had this diagnosis for a short time, and am doing my best to research as much as I can about it so I can make informed decisions about my future, however I am having a difficult enough time getting through the day-to-day. As I am writing this now, I am having to fight with my eyes to focus on the text; they want to blur. I can hear my heart beating in my head and there is recurrent ringing, hissing and “wooshing” sounds in my ears. It is all rather distracting and tiring. Of particular concern lately has been the twitching which makes it difficult to relax or focus on anything, but is not typically reported in CM cases. Anyhow, I will continue my self-directed research, and try to maintain some degree of “normalcy” and sanity in my life. I am still working part time, and finishing a course. But I have been cutting back shifts and missing classes, and am pretty overwhelmed to say the least. What also makes it difficult, is that to others I look “fine”, and not like someone who is “sick”. I am grateful that the problem might be treatable, and that I am still able to take care of myself for the most part, but there are those scary times when I’m not sure if I really can, or for how long. I’ve been trying too look at life as one day at a time, but It’s been day after day of struggling to get up the same hill, and it just keeps getting higher and steeper. (Sounds like a bad pop country song, but you get what I mean.)
I have found a lot of hope in connecting with other people with CM over the web. There are also a lot of really awesome websites. I don’t want to overwhelm, so this is the one I will admit I have been finding the most resourceful lately:
The ‘Education’ and ‘Awareness’ sections are particularly good to start with.