Welcome to my blog about spasmodic torticollis! I have decided to start writing this blog for several reasons.
- I have been diagnosed with cervical dystonia (CD), i.e., spasmodic torticollis (ST).
- Little is known about this disorder, and I feel the need to gather information about it in one place.
- Also, I want to understand what the disorder means, from different points of view, on different levels.
- I think that any disorder, even so-called chronic ones, can be cured. And it should definitely be possible to cure cervical dystonia, since spontaneous remissions occur all the time!
- I want to document my quest to cure myself (without botox and/or surgery), and I want to share it and interact with others around the globe who are somehow connected with this quest.
First things first. I’ll tell you a little about my history. Today it’s exactly one year ago that my ST symptoms really broke out. I was on a rather stressful business trip to Poland, when I noticed that I couldn’t hold my head straight. I had had neck pain and some involuntary twitching in my neck for several months, but I didn’t think much of it. A year earlier I had made a wrong move on the diving board in the swimming pool, causing my head to snap backwards. So up until then I just thought that incident had been responsible for the nagging pain. But in Poland it had become serious: when I walked, my head really completely turned to the left, with jerking movements.
When I came home from the stressful trip, the symptoms faded away somewhat, but soon came back and started to gradually become stronger. I consulted with my generalist and manual therapist, but they didn’t know what to think of it. I was feeling increasingly miserable. And after a long beach walk, where I actually had to hold my head with my hands to keep looking in front of me instead of way to the left, I was really worried and started a good Google search. 15 minutes later I had a Post-It note in front of me with two things written on it: “cervical dystonia” and “spasmodic torticollis”. I understood that both designations represented the same thing, and also that this was definitely what I had. A week later I saw a neurologist, who confirmed my fears. Subsequently, I had my blood checked and an MRI scan of my brain made. Nothing abnormal came out, so the official diagnosis was: primary spasmodic torticollis.
I was shocked. I saw my life falling apart. I could not go to the office anymore and had to work (limited hours) from home. Also, going to my beloved dojo for karate training was completely out of reach. I saw myself as a handicapped person. Fortunately, that phase didn’t last long. Looking at it from the bright side, I realized that my body was giving me a signal that something had gone wrong. So I became determined to understand the signal. I will get back at that later on.
The neurologist proposed a botox treatment. But I declined. I do not believe in fighting symptoms as a structural solution, especially not in case the active substance is poisonous as hell. To me, that is literally like shooting a messenger who has come to bring some (probably bad) news. Within my initial 15-minute Google search, I had also come across a website of a fellow ST patient, who had been able to master his symptoms without botox or surgery, living by the guidelines of a small American clinic. This inspired me a great deal.
Within weeks, I had booked a trip to the Spasmodic Torticollis Recovery Clinic in Santa Fe (see www.stclinic.com), led by Abigail Brown. I had been in touch with yet another fellow ST patient who had visited the clinic in 2006, and who had reached his state of “ongoing recovery” two years after that. His results and online testimonial video were very convincing and so I went to Santa Fe. At the clinic, I learned about specific stretching exercises, fitness exercises, massage techniques, diet restrictions, correct posture, correct sleeping position, and more. My quest could begin!
After getting back home in August, 2011, I started to seriously follow all the clinic’s guidelines; I did the daily exercising, found a great PT (whose wife also has ST!) nearby who was willing to help me with the massage, stopped drinking wine (that hurt), eating sugar, white bread and pasta, etc. And guess what? My symptoms got worse. At least in the beginning. It took months without seeing any noticeable improvement. I didn’t only have ST; ST had me. I had to hold my head with my hands all the time when I was up, I couldn’t eat with both hands, I could only work on my laptop when lying down on my back on the sofa. And still no wine. Moments of despair were frequent. It was no joke.
But, by December, 2011, things did start to change. Jerks and spasms became sparse, the position of my head became straighter, I was able to sit in a chair and work on my laptop, and I could do some simple tasks without having to hold my head. This was good!
Now, in April, 2012, I am doing much better. I can type this blog post without any spasms, with a straight head. I can sit in a meeting for hours. I can walk a few minutes without people looking at me, wondering about the strange head position and movements. People that do not know me and do not pay close attention, cannot tell that there is something going on with my neck. So I gained a lot with the approach from stclinic.com, and I owe Abigail for that! Also, I am sure that with time, my symptoms will further diminish until I reach the desired state of “ongoing recovery”.
However, the approach has its downsides. Exercising needs to be continued for the rest of one’s life. Same story with the diet. (O, my dear wine cellar!) And all shocks, either physical or psychological, need to be avoided, since they can trigger a strong and immediate return of the symptoms. (O, my dear karate dojo!)
Being an enthusiastic internaut, I have searched the net very thoroughly since the onset of my symptoms. And I found many interesting pieces of information on ST, which I will share on this blog. One of the most intriguing finds is the treatment approach based on TMJ alignment. Even before finding this information, I had already noticed that when I opened my mouth to the maximum, my ST vanished. To me it’s obvious: there definitely is a link between ST and the jaw. Most ST patients have a jaw imbalance (TMD) to some degree. I am no exception: both joints click loudly when I eat; they often produce a grinding noise, etc.
So I started an email conversation with Dr. Young-Jun Lee, who has a clinic in South-Korea, treating several chronic disorders – including ST – using his proprietary method, which he calls FCST. A core ingredient of the method is jaw alignment. But he also deploys traditional Korean healing methods. On YouTube, there are a couple of very convincing patient videos, showing his achievements with Korean ST patients. Dr. Lee has told me that his treatment yields definite, permanent results. So after successful treatment, there is no need for daily maintenance, except for normal, healthy living. Moreover, he confirmed to me that, once he says I am good to go, I will be able to safely enter wine cellars and karate dojos again!
Furthermore, he explains that he creates the boundary conditions for the body to heal, by re-establishing blocked pathways, but that the actual healing has to be done by the patients themselves. I strongly believe in this point of view.
So I am intrigued. I have never been in Korea. I do not speak Korean. But I like a challenge. And I like to give myself a chance to heal further. So I have decided to go there. I will have to stay there for weeks, or even months, depending on the actual speed of my recovery. I am now arranging the trip. My departure is scheduled for the 5th of May, 2012.
On this blog, I will post regular updates about this quest I have started…
PS: for anyone who is interested, inquiries can be sent in English to Dr. Lee’s below email address
Young-Jun Lee, K.M.D. PhD, DMSc
Lee Young-Jun Korean Medicine Clinic
Founder of Lee’s Functional CerebroSpinal Therapy (FCST)
Professor at the Graduate School of Integrative Medicine,
College of Medicine, CHA University
Director of the Institute of TMJ Balancing Medicine
Director of the Refractory Disease Research Center
1616 Dujeong-dong, YongYam B/D 5F, Cheonan City, Chung-Nam, 330-210 South Korea
Phone: +82-41-552-0056/0057 Fax: +82-41-553-7708
Information in English: http://kmhglobal.com/h/find_my_clinic/