Tuesday, February 9, 2010

In rolls the storm...

Back when I was 16, I was hit by a car while crossing the road.  I remember stepping into the street and before I knew what happened, I slumped onto the hood.  Don't worry - I was fine.  Bruised, sore, and scared, but I was fine.  Not too long after the accident, my upper back started to spasm.  It wasn't just a twitch.  The muscles between my shoulder blades would clench down and not let up.  This would go on for a couple weeks until I got in to see the chiropractor.  The combination of adjustments and massage seemed to help, and the spasms would let up for a few months.

Over the past couple of years, the spasms have gotten worse.  About a week after I had my daughter, I noticed my knees and ankles aching.  I didn't understand it at the time, but the pain was trying to tell me something.  Before too long, my right leg felt so tight that it would burn from walking.  If we went out to the zoo or shopping, my heel would be bright red and swollen within a couple hours.  After months of physical therapy and trying every conservative treatment available, I decided with my doctor to have surgery.  The surgery was successful, but I tripped a few weeks after the surgery and tore my gastronemius (calf) muscle.

Fast forward a year.  I'm under a lot of stress after failed carpal tunnel surgeries, getting laid off, and losing a friend.  My back started to spasm again, and would not let up.  I tried chiropractic adjustments, massage, accupuncture, muscle relaxers, magnesium shots, and muscle stimulation/tens.  Nothing seemed to help.  After an mri, my chiropractor wanted me to see a neurologist.

I spent much of the Christmas season being poked and prodded.  Nerve conduction studies and emg's were ran for my arms and legs.  My brain was scanned and studied by eeg.  I got a diagnoses - cervical and thoracic DystoniaDystonia is a neurological condition that causes muscle contractions.  The muscle spasms from Dystonia are sustained, twisting contractions that cause posturing or repetitive moments.  My neck pulls forward and to the side, and my shoulders hunch in.  My face will twitch, and the corners of my mouth and eye will pull down. 

My medicine was adjusted.  Baclofen helps a little, but the spasms are getting worse.  On the 18th, I am scheduled to get Dysport injections.  Our insurance covers the treatment, but I am not looking forward to finding out what our share is.  The doctor will have to move my neck around to locate the over-active muscles, and then carefully inject Dysport.  It's an art, really.  Use too little and the patient is going to continue to suffer.  Use too much, and it could cause weak muscles, paralyzed muscles, loss of the ability to swallow, and even death.  To help prevent side effects, the doctor starts with a low dose that is gradually increased.  These injections are repeated every three months, and not any sooner.

This past year has been difficult.  If I were to make a list of insanity of this past year, I'd have to wonder how I survived it.  But survive it I did.  Survive it I will.  Sometimes all that matters is to put one foot in front of the other, and to keep on moving.


  1. Ohh, Jillian, I am so sorry for all you have been through with pain and trying to get a diagnosis! I know exactly what Dystonia is. I saw some people with it on "The Doctors" and "Mystery Diagnosis."

    For some reason I just had a flashback....did Jacqui tell me her mom has it???

    Take care my dear!!

  2. Yes - she's got it too, but in her hand. She shared the love with me. ;)


Related Posts Plugin for WordPress, Blogger...