Courtesy of Barbara Green
Two years ago television/film producer and literary manager Rogers Hartmann woke up with a stiff neck and thought nothing of it. But, as her stiff neck progressed, turning painful and causing spasms in her right side, she realized it was something more. After visiting many doctors and specialists, many of whom were unable to correctly diagnose her; Hartmann learned she has Dystonia/Spasmodic Torticollis -- a neurological condition that causes involuntary muscle contractions. At one point Hartmann was bent at a 90 degree angle, in chronic pain and using a walker. She says on her worst days she would stay in bed, day and night. Today, at 37, she remains positive and upbeat, approaching life with a sense of humor. Here, in her own words, Hartmann shares her story to raise awareness about Dystonia and help others who may be suffering.
Story continues below the gallery.
Rogers Hartmann on Dystonia
by Katherine Steinberg
For Rogers Hartmann what began as a stiff neck has been diagnosed as Dystonia/Spasmodic Torticollis -- a neurological condition that causes involuntary muscle contractions. She is constantly pulled to the right side by these contractions -- leaving her at times bent at a 90 degree angle, in chronic pain and using a walker.
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For many months doing some of the most basic things, such as showering or feeding her dogs, seemed truly draining. She says that on the worst days she would stay in bed all day and night.
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Although she didn't go to see a doctor for a year, Hartmann was concerned she had Dystonia. Her older brother, Greg, had been diagnosed with Dystonia, bringing the disorder to her attention as a potential cause of her pain.
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Getting a diagnosis wasn't easy. She had to see five doctors, including a neurologist who injected the wrong side of her body with Botox. The Botox should have been used to stop muscle contractions, but instead, wound up preventing proper treatment months later. Often doctors would insist she had scoliosis.
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On the recommendation of her parents Hartmann finally found a doctor that could help her, Dr. Mark Lew at USC Medical Center. She was diagnosed with a severe case of Cervical Dystonia a.k.a. Spasmodic Torticollis. On a scale of one to ten she was a nine.
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Their first visit lasted two hours. His course of treatment involved Botox injections in her neck and torso. However, she had to wait three months to get the injections since the previous doctor had injected the wrong side of her body.
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Now Hartmann is treated with two medications and Botox injections, which have helped her "feel human again." She has regained partial mobility and started sleeping better.
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Throughout all the pain, Hartmann never put her job as a television/film producer and literary agent on hold. She ran her business from home using the phone and e-mail. She chose to remain positive and focused on laughing and the support from her friends and family. She says, "It never turned into a pity party."
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Hartmann has continued to improve and says she has felt "positive and chipper 95 percent of the time." She keeps her spirits high by listening to music, hugging her dogs as much as possibly as well as her partner, Elizabeth Spencer who "was and is my rock."
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Her advice to others who may be suffering is to investigate persistent symptoms that may be scaring you. Find the right doctor and when you do, bring an advocate with you. Make sure that person can take notes and support you. "Make educated and proactive decisions about your treatment. Listen to what the side effects are. If you cannot wrangle an advocate, then bring a notepad and write everything down. If you have unpleasant side effects call your doctor right away," says Hartmann.
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Diagnosis and Treatment
The BeginningAbout two years ago I started to feel like my neck was stiff. I ignored it because it was not that painful and I attributed it to the bed I was sleeping on. No big deal. Over a long period of time, my neck became more and more stiff and I started to notice that I could not turn my head to the right without being in significant pain. Any of you who are reading this and have a stiff neck, do not panic, do not run to your doctor. I had these symptoms for a year plus before I went to seek medical help. This is due to a former weakness of mine -- fear of doctors. If you have persistent symptoms, then go to your doctor. It could be nothing or it could be something that changes your life.
My head was increasingly to the right side and my torso started to twist and constantly spasm. I could not bring myself to look in the mirror. I was ignoring the reality of my disorder.
A Changing Life
For many months, I had an incredibly difficult time doing the most
basic things. Just the thought of getting dressed, showering, feeding
the dogs was truly draining. Friends walked my dogs, did my dishes,
vacuumed my house, and brought me dinner.
During the worst days, [I would] lay in bed all day and all night, all the while running my own business. Aside from not being able to attend business meetings, I did not miss a beat. I work in the film and television business so I was fortunate to be able to work via phone and email. My clients were understanding, as well as my fellow business associates. It never turned into a pity party -- more than anything, I focused on laughing and finding ways to feel supported by my friends and by my sister, mother, father, sister-in- law and brother.
Getting a Diagnosis
I had to go through five doctors to get a proper diagnosis -- Cervical Dystonia a.k.a. Spasmodic Torticollis. And mind you, I had been telling ALL of these doctors that I was concerned that I had Dystonia.
The first few had no idea what that word meant. I was aware of the
disorder because my older brother, Greg Hartmann, has it, as well. His
Dystonia is milder and he sought help faster. My general practitioner,
Dr. Sourpik Avakian, admitted to me that she was out of her depth on
this one. In my opinion, that is far more respectable than doctors who
charge you, "treat" you and have no idea what they are doing. I am
forever grateful to her for taking her ego out of it and saying, "You
need to see someone other than me."
I was referred by a neurologist to another neurologist who was trained in using Botox to treat Dystonia. He injected the wrong side of my body even though my partner, Elizabeth Spencer, and I repeatedly questioned him. And he insisted he was right.
Two weeks later it was confirmed that this well-respected doctor had injected the wrong side of my body.
There were other doctors who insisted that I had scoliosis, no matter how much I pressed them for more information. My neuromuscular scoliosis is secondary and I knew that. My hope is that doctors will ramp it up as related to education about Dystonia. Please. We need your help.
Unofficially, I truly believe that at least a million people suffer from this "mystery" disorder. The official numbers are 300,000 to 500,000. There are far too many people who are misdiagnosed and undiagnosed.
Taking Control
Anyone who has persistent symptoms that are scaring you -- bring an
advocate with you [who can take notes]. Stand up to your doctor if
something does not ring true. This can all happen in a friendly manner.
I could have done it on my own, but I think often there is too much
information thrown at you. There should be a second set of ears and
eyes with you.
Once you find a way to get a good doctor -- make your
appointment. Go to it. Talk to your doctors about Botox. It has helped
me. Listen to what medications they think you should be taking. Make
educated and proactive decisions about your treatment. Listen to what
the side effects are. If you cannot wrangle an advocate, then bring a
notepad and write everything down. If you have unpleasant side effects
call your doctor right away.
I never returned to the neurologist who had no idea what he was doing
and wrote him a long letter to explain to him that his treatment was
unacceptable and his approach was even more unacceptable. I left it at
that. We should demand more from the medical community.
