Cheryl Metz’s Story

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As with so many others before me, I found it hard to get motivated to talk about my affliction with Cervical Dystonia.  I did tell you, Howard, at the symposium in Sep 09 that I would like to tell my story after reading about so many others with spasmodic torticollis or cervical dystonia.  So today, I finally decided that it was time to try and tell my story.

I feel I am a success story and I want others to know that there is definitely hope for us and not to settle for just one doctor’s opinion (which is what I initially did). If it wasn’t for Dr. Carlos Arce and the two selective de-nervation operations he performed on me, I sincerely believe with all my heart that I would not be able to function today.

I attended my first ST/CD symposium in Sep 09 in Atlanta.  I really enjoyed the symposium.  It was, however, an eye opening experience to say the least.  I have had CD for at least 8 years now (that I’m aware of – I don’t know exactly when it might have started).  I always felt isolated with my affliction but being at the symposium gave me a clearer picture of what so many others like me go through on a daily basis.  After registering for the symposium, I was so upset that I had to leave and go to my room and cry.  While my symptoms are under control most of the time, I saw so many others who couldn’t control theirs.  I was devastated for them.  I finally realized how lucky I am today.  But it has been a struggle for so many years.

But let me start at what I think was the beginning of my affliction to show how far I’ve come.

Back in late 2002, I began noticing my head would turn to the right.  I could always bring it back to the normal position, but it would always turn back to my right side, no matter what I tried to do to prevent it.  I went to a local neurologist, who indicated it was just a motor tick; however, she did refer me to a neurologist in Birmingham, AL since she thought she couldn’t help me.  The neurologist in Birmingham diagnosed me with cervical dystonia.  The medicine of choice to help alleviate the CD was botox injections.  Meanwhile I did some research and found out that was the case with other neurologists.  So I spent 2-1/2 years going to that neurologist every 3 months to have botox and/or myobloc injections in the neck muscles.  I was given the maximum doses of both; however, neither one helped in alleviating the head and neck pain or the rotation of the neck.  The neurologist explained that it was a matter of hit and miss – meaning getting the correct dosage into the correct muscle.  No imaging machine was ever used on me there.  I was told I needed to be patient and that it could take quite a while for the medicine(s) to work.  I’m not a very patient person; however I thought I needed to be for this.  Was I ever wrong.  My neck got worse and by the end of the 2-1/2 year period, it was completely turning to the right shoulder. I could still bring it back to a normal position, but it wouldn’t stay there.  It got to a point where I was afraid to drive because I couldn’t keep my head straight.  I became so conscious of the affliction that I couldn’t even attend meetings at the office unless I sat at the side or back of the room with my head held tight up against the chair or against the wall.  I felt everyone was looking at me and knew that I had a major problem.

After 2-1/2 years, I finally told the neurologist that nothing was working and asked if he knew someone he could refer me to.  He mentioned Dr. Carlos Arce at the University of Florida, in Jacksonville.  So a referral was sent to Dr. Arce.  I was asked to do a CD of myself so that Dr. Arce could view my symptoms.  So I had two friends at the office help me.  One was the “director” and the other was the “video recorder”.  It was actually funny.  We did two takes just to be sure we did everything right.  My friend Nancy (“The Director”) would say “CUT” at the end of each take.  At least we were all able to have a good laugh since the girls in the office knew what I was going through.  After Dr. Arce reviewed the CD, we had a long phone conversation.  Dr. Arce never hurried me and allowed me to talk about all my symptoms.  In other words, he truly listened to me and at the end of the conversation, he believed I was a good candidate for the selective de-nervation procedure.

I went down to Jacksonville, FL, in Mar 2006 and met with Dr. Arce the day before my scheduled surgery.  My family was there to support me and make sure that we got all our questions answered since I was so nervous and would probably have forgotten to get all the pertinent information that we needed.  Dr. Arce hooked me up to the imaging machine which registers the activity of the muscles and nerves.  Most of mine was extremely active.  It was amazing and fascinating but also terrifying to see just how active my neck muscles were.  Dr. Arce knew just what needed to be done.

To make a long story short, I was operated on the next day and then again 6 months later since it was too much to do in one surgery.  It was successful.  I do have some side affects as a result of the surgeries.  To this day, my head doesn’t go to the right.  As a matter of fact, I can only turn it slightly to the right, which is fine.  It allows me enough leeway to be able to see when I’m driving.  Another side affect is the back right side of my head is numb; but I’ve gotten used to it and it doesn’t hinder me any.  I can move the head to the left as usual, but the head will come right back to the normal position, which again is fine.

I continue to see Dr. Arce every three months for botox injections to help keep the neck muscles relaxed.  I made a decision that the expense of coming from Harvest, AL (which is close to Huntsville, AL) to Jacksonville, FL, every three months is well worth it.  I find I can’t trust anyone else to give me the botox injections, especially anyone who would use the hunt and peck method on me.  I’ve come so far – I don’t want anything to be ruined.

Of course, some days my head and neck tire easily after working in the office.  But if I lie down and rest for about 15 minutes, I feel rejuvenated.  I believe I’m about 80% better if not more than before thanks to Dr. Arce.  There are still times when my head will bob slightly (believe it is from anxiety, stress, or being tired).  Again, rest helps me.

So my message to everyone with spasmodic torticollis or cervical dystonia is to not give up – there are doctors out there (maybe not too many) that can help you.  You need to do the research.  I also found the symposium and the magazines to be very informative.

If any of you would like to contact me, please do so.  I would be more than happy to talk to you.

Sincerely,

Cheryl

I've found your web site the most helpful of them all. The way it's written really has helped me. Kristi, New Zealand