Twisted Head Part Six-Whatever

It's been July since I last wrote about my twisted head.  I suppose that could be a name for a rock band, the twisted heads.  Anyway, there hasn't been much of a change.  The second set of shots where the neurologist used the EMG machine, seemed to work fairly well.  So, I was rather optimistic.  I could hold my head relatively straight and didn't feel such a tug to raise the left shoulder.  So, I went back in Oct. and had another set of shots. This time he did not use the EMG machine, convinced it was one particular muscle group and put one entire vial of Botox into that muscle group and the other vial, he spread around.  Instead of progressing, I was now somewhere between day one and the second set of shots.  Disappointment is an understatement. Read more... 
  I'm normally a pretty good golfer.  I shoot in the 80's with an occasional 78 or 79.  But this year that was not the case.  I don't know if I let my mind play games with me or the raising of my left shoulder 4-5 inches because of this affliction has changed my swing. I don't know.  But I was routinely shooting 95-105.  Not good.  Not good at all.  Earlier in the year, I had tried to get an appointment with a Botox specialist but the wait was 3 months.  So, I made an appointment.  In the interim, I had the second set of shots, which as I stated above, seemed to really help.  I cancelled the other appointment.  Big mistake.  As I stated, the third set by my first neurologist seemed to make me go backwards.  Now my friends say they see an improvement but my neck really gets tired from me fighting the tugging sensation.  So, I finally got in with the "specialist" for an consultation.  They did some motor tests on me to determine that I hadn't had a stroke or have MS or Parkinson's.  It's a lot like a drunk driving test.  Since I had my third set of shots in Oct., I couldn't make another appointment until Jan., 2011.  My appointment is for Jan. 12.  The snow storm hits on Jan. 9.  The doctor calls to reschedule the appointment for Monday, Jan. 17.  Botox is approved by the insurance company.  Delivery is all set for Jan. 11.  Fedex and UPS can't get their shipments in for delivery.  It will be delivered on Thursday.  No Friday.  No Monday.  Arggggghhhh!!!! My appointment is on Monday at 8am!  We eventually worked something out...




Some of you called me with the news that the spasmodic torticollis non-profit had been running new public service ads with the late Dixie Carter.  Thank you for that.  I called them and they sent me a bunch of info and it was good to know that the doctor I will see on Monday is one of the top specialists listed.  Yes!  What their info did tell me to do though is to go through physical therapy.  They have a DVD that I ordered where you can do the exercises and stretches at home.  I ordered that.  There are only 300,000 of us out of 300 million people in the US that have some form of spasmodic torticollis.  I always knew I was special.  During my consultation with the specialist, I asked him what his goal for me was and if anyone had ever been cured.  The short answer for the last question is brief-no.  He has had A COUPLE of people who can come in every three years or so for shots and then go on their way for another three years or so.  But the majority of us will have to undergo treatment every three to four months.  He wants me off the Valium (I'll agree with him on that) and he wants the pain that I feel in my shoulder and neck to disappear and for me to be able to hold my head straight.  Let's pray that we can get this achieved.  I get the shots on Monday and as soon as I get the DVD on the physical therapy, I hope I'm good to go. 



Thanks for listening to me.  This affliction, although non-life threatening, is a big pain in the neck!