; Tin Can Canoe: ST/Dystonia... A Wee Bit of Medical Jargon

Wednesday, July 2, 2008

ST/Dystonia... A Wee Bit of Medical Jargon

This post is shamefully long.
It contains entirely Too, Too much medical information.
I'm extremely long winded about all the sordid details.
Please feel free to skim the following contents.
Take a potty break and treat yourself to a triple shot of caffeine before reading this blog entry.

Just in case you were wondering where I've been... I didn't evaporate, nor did I fall off the edge of space. But considering what I have been doing either one or both of those options were looking pretty desirable.

Welcome to the Freak Show. That's pretty much how I feel about myself when/while I'm having what I lovingly refer to as an "ST Flare". Please note that I don't feel this way about Other folks with ST. Just myself. So no hate mail please. I've really got enough on my plate right about now, thanks. I've been in Full Flare (FF - my own term) since Sunday evening and just finished my 3rd day in a row of muscle massage therapy (MMT). I feel like I've been beaten to a pulp with a sock full of gravel. But hey, at least I'm finally able to move my head and can lift my arms high enough to wash my hair... we're all thankful for that one! And hey! Even though the stabbing pain is back between my shoulder blades and not to mention that computer time is utterly forbidden at the moment -- I just couldn't wait another day to update the ol' blog :)
My priorities are so totally straight.

I don't want this to read like a medical paper... but I'm always surprised by how few people really know about or have even heard of this condition. And since I've just suffered from my 2nd major "ST Flare" in 4 months I thought I'd share some information about it. The condition is actually not all that rare & who knows, perhaps you know someone who is suffering and hasn't received a proper diagnosis. Here's hoping this helps someone out in the vastness we call the internet.

In a nutshell - have you ever woke up in the morning with a really stiff neck? Like you slept on it all wrong and now feel like a dried up pretzel? Have you ever had a charlie horse? So bad you wanted to scream like a banshee and stab away at the pain with a dull knife? Well dear friends, multiply that by about 1000 and try to imagine while all this is going on your head is contorted backwards (so that you're facing the ceiling), your shoulders are up around your ears, your arms are perched in a permanent C3PO pose and in order to breath you have to pant like dog. Charming eh? Yeah, welcome to ST dear readers :) It's pure joy and not the prettiest of pictures.

Spasmodic torticollis (ST), also called torticollis or cervical dystonia, is a painful condition in which your neck muscles contract involuntarily, causing your head to twist or turn to one side. Sometimes the contractions are sustained and other times the neck muscles spasm, causing a repetitive, jerky movement of your head. [this rarely happens to me because my muscles are too tight and locked up for any mobility] The pain in most cases is severe. Trying to do any of the common (taken for granted) everyday things such as sitting, standing, walking, bending over, squatting down, lying down, and eating all become extremely difficult. Not to mention very, very, very painful. Actually when you're in FF you should just Forgetta Boutit!

Did I mention painful? Yeah, oh good.

Spasmodic torticollis is a form of dystonia. There are various types of dystonia, identified by where they occur in your body and what causes them. All involve involuntary and intermittent muscle contractions that cause repetitive, often twisting movements, which produce sustained abnormal postures. Dystonias involving only one limb or body part (trunk, neck, face) are referred to as "focal." -- this little tidbit is rather misleading. All of my FF's include the following muscle groups that are involved with complete and total lock up: Both shoulders and upper arms, my neck, upper back and most recently the muscles around my rib cage. Spasmodic torticollis is the most common type of focal dystonia. So I guess my "focal" region keeps growing?

Nobody knows for sure. It is idiopathic in origin (unknown). Although genetic studies are ongoing, heredity, at this time, occurs in no more than 5-10% of those surveyed. An accident, or a trauma of some kind, can trigger its onset. In approximately 50% of the ST population, there is a family history of hand or head tremors (familial or essential tremors).

Some medical people believe ST’rs are born with a predisposition to the torticollis/dystonia gene and somewhere along life’s path, it is triggered by the aforementioned causes. ST affects movement only and is not life threatening. As a result of this chronic problem ST can affect personality. Therefore, help and support are often needed by family and friends.

Please note the side and back views of the muscle system from the neck on down. The main muscles, but not the only ones, that are most prominently involved, are the sterno-cleidomastoid, trapezius, levator scapulae and splenius capitis. On occasion, when the muscles in the neck contract, they can cause tightness and contractions in the whole body.

As mentioned earlier, ST is also known as cervical dystonia. Dystonia is the generic and/or family name and means abnormal muscle tone. There are many different forms of dystonia. All of them are referred to as “focal” forms. ST, or cervical dystonia, is one of them.

My doctor summed it up like this: "Your muscles are senile. They can't remember what they're suppose to be doing and often get confused quite easily. They think their normal state is to be fully engaged or "on" full time. It's like a charlie horse magnified about 1000 times and on speed. Because it's so fast and intense muscular knots are formed very quickly because the spasm keeps the muscle continuously "on". Normally, even when doing heavy lifting, no muscle is working continuously. Instead, as the body moves in normal activities, different muscles cycle on and off. Muscles are not designed for this continuous work. After varying amounts of time the muscle overloads and forms these knots. These muscle knots are often referred to myofascial trigger points." For me, I start to experience trigger point knots forming within about 5 - 10 minutes once a Flare is triggered.

With all that said I'm very, very lucky. There are lots of folks whose condition is far worse than mine. They live in FF every day. I was diagnosed nearly 7 years ago and at that time was told it was a degenerate disorder... so the outlook appeared to be fairly grim. However, throughout the past few years, that idea has been replaced (thank heavens) and most feel it's a condition that usually won't progress past a certain stage. But what "stage" that is, no one seems to know. Although my diagnosis was confirmed 7 years ago I know that I've suffered with milder symptoms since my late teens and the condition has just slowly progressed to what it is today. I can't remember a time when my trapezius muscles weren't tense and solid as a rock. I have the Retrocollis ST variety.

I experience FF's about 4-8 times a year, but ST is always present. I have limited mobility in my neck and often experience pain, numbness and sporadic twitches every day. But I can live with them, it just means that I often move about like I've got a rod where my spine used to be and have great difficulty looking behind me. Sometimes a FF just happens, I move in a certain way, or sleep in a certain way, stretch in a certain way... like they say - Some days chicken, some days shit.

What works for me: I do my best to not encourage FFs. Which yes, can happen at any time - but I feel certain activities act as a catalyst for full fledged lock ups. Things like sitting too long in the car, sewing for long periods of time, too much computer time... all things I love to do - but have to limit to avoid the risk. But like all things, sometimes even the best laid plans can get hit broadside by life. I also routinely have MMT 2-4 times a month. And when MMT just can't battle the spasms or the pain I've had fairly good success with trigger point injections and Valium. The shots aren't very painful, but my last set required 27 shots. One at each end of each muscle and one or two in each major knot. It's my least favorite, the MMT makes me incredibly sore but I prefer it to being loaded up with meds.

So there you have it... most of these facts can be found peppered throughout the internet and from the ST/Distonia Website. Expand your horizons and pay them a visit. Their site didn't exist when I was first diagnosed and am so thrilled it is available now!


amac said...

Wowzers! So sorry to hear you are in such pain and so frequently. Hopefully this episode will be short lived and you'll be back to your jolly self so soon. I've missed your blog these past few mornings. We're off on vac tomorrow!

Take care of yourself

Anonymous said...

Have you tried looking at it differently. With a combination of PNF stretches, neuro reflexes for weak muscles and some joint techniques you can actually remove and prevent your torticollis. And fix the rest of your spine at the same time. It is very simple and can be done at home.

Look into it so that you can keep blogging - just pain free.

Dr Graeme Teague
The Back Pain Advisor

Jackie said...

You are the second person in two days to have returned to blogging with a revelation of a medical condition. I hope the flare soon calms down for this time and you can look into the above suggestion.