Correction
In "Life After Stroke," (August/September 2013), we incorrectly referred to fluoxetine as Paxil. The correct brand name is Prozac.
Cervical Dystonia
Thank you for the article about cervical dystonia, "Much More Than a Pain in the Neck" (August/September). Despite being the third most common movement disorder, most people have never heard of dystonia and have no idea how profoundly it affects one's life. As a retired registered nurse, I knew nothing about cervical dystonia until it happened to me. The symptoms are often not recognized and people suffer pain, abnormal head and neck position, and social embarrassment for months to years before getting a proper diagnosis. Stephanie Stephens did a great job with limited space to present a lot of information. - Carol Flynn, Retired Registered Nurse, Leader of Dystonia/Spasmodic Torticollis, Support Group in Fairfield, California
I have received botulinum toxin A and B injections every 3 months since 1988, when I was diagnosed with spasmodic torticollis (cervical dystonia). The treatment works for me unless I have an abnormal amount of stress, and then my head will pull to the right a lot. I work full time and have health insurance; however, recently we had a change in our plan and I now have to pay for the medication (as opposed to just a copay). The cost is $3,000 per calendar year, which I cannot afford. The company that makes the drug does offer assistance to some people, but I don't qualify. - Gerry Estep
THE EDITOR RESPONDS: We're sorry to hear that your insurance no longer covers the medication. Our article "Get Well, Spend Less" might have some suggestions on where to find financial assistance.
Your article on cervical dystonia overlooked the very important treatment option of selective denervation. My wife first exhibited cervical dystonia symptoms in about 1984, although it would be another five years before a diagnosis was made and confirmed. In 1989, she underwent a 10-hour surgical procedure for selective denervation. The surgeon located the nerves controlling the muscles that would spasm and severed the nerves to allow the muscles to relax. After undergoing extensive physical therapy to retrain her brain as to what looking straight ahead meant, she shows few residual signs of cervical dystonia. Although not totally pain free, she has enjoyed life to an extent that would not have been possible without the procedure. - Maurice and Marie St. Germain, Howell, MI
THE EDITOR RESPONDS: Thank you for pointing out this surgical treatment option for cervical dystonia. Selective denervation has been performed on more than 2,000 patients since being developed in the 1980s. Patients considering the procedure must be evaluated by a neurosurgeon, have an electromyography test to determine the affected muscles, and be videotaped to study their movement. Afterwards, it is important that patients do exercises to improve their posture and improve the range of movement.
Stroke Recovery
Per Editor-in-Chief Dr. Robin Brey's invitation in "Life After Stroke" (August/September), I would like to share some advice based on my experience of recovering from two strokes.
Hire a lawyer, if possible, to work on any disability claims. Put together a great team, including the top neurologist in your area, and with a good internist as your quarterback. Do your physical therapy; I paid for this myself when insurance ran out, and I felt these were the most important dollars spent. Join a group like Weight Watchers to get your weight down to a healthy level. Get an assortment of therapies working for you—I tried massage and reiki—but never replace Western medicine and medications. Stay active mentally. And be persistent: I'm three years out from my second stroke; traditional wisdom says almost all recovery is done within two years, but I keep plugging away and seem to still be improving. - F. Todd Winninger, Coral Springs, Florida