Why this blog?
Welcome to my blog about cervical dystonia! I have decided to start writing this blog for several reasons.
- In the spring of 2011, at the age of 43, I have been diagnosed with cervical dystonia (CD), a.k.a. spasmodic torticollis (ST).
- Little is known about this disorder, officially, 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.
In the beginning
First things first. I’ll tell you a little about my history. In March 2011, my CD 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!
Up the mountain
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 CD!) 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 CD; CD 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!
By April, 2012, I was doing much better. I started this blog, being able to type without any spasms, with a straight head. I could sit in a meeting for hours. I could walk a few minutes without people looking at me, wondering about the strange head position and movements. People who did not know me and did not pay close attention, couldn’t tell that there was something going on with my neck. So I gained a lot with the approach from stclinic.com!
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!)
The next phase
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 CD, which I share on this blog. One intriguing find 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 CD vanished. To me it’s obvious: there definitely is a link between CD and the jaw. Most CD 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 CD – 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 and actually realigns the entire spinal and pelvic structure. 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 explained 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 in May, 2012, I went to South Korea to get treatment in his clinic. I stayed there for 2 months and got intense, daily treatments. You will be able to find full details when browsing through the posts on this blog. I experienced rapid improvement in the first few weeks. There were some totally ‘free’ episodes. But then I started to experience more symptoms and fluctuations. And after two months, right before returning home, my symptoms were so bad that I had to hold my head with my hands again in order to get through the day.
It took me some time to realize what had happened. I had tried to force my healing. I had put deadlines and milestones on the process. And I had received the maximum possible number of treatments, without listening to the signals my body gave me, re-traumatizing it, until it (through CD) clearly told me to slow down. So I learned that!
Also, I saw several people with CD getting completely healed in the clinic. Their advantage: they live near the clinic, put no pressure on the healing process, just take all the time they need, do not get so many consecutive treatments, can go home to recover from individual treatments and come back days or weeks later.
Now, as I am updating this page in April, 2013, I see that my perspective on CD has shifted somewhat. I still acknowledge the potentially positive effect of physical treatment and exercise, but I think the physical approach will only work if accompanied by a genuine change from within. I think it will be helpful for us to understand that CD not just ‘happened’ to us, perhaps due to some genetic predisposition and/or incidental (physical) trauma. Those factors may very well contribute as triggers and catalysts, but the root cause is something else.
Through interaction with visitors of this blog, I got a lot of confirmation of the idea that we have suffered childhood trauma, with subsequent accumulating trauma during the rest of our lives. On top of that, we have a specific personality type: INTJ (MBTI type). We INTJs deal with pain by rigidly structuring and controlling our lives, living in our heads, losing touch with our feelings and bodies. Then CD appears to show us that our system has had too many segregative impulses, that we have lost all flexibility and got out of balance,and (ironically) out of control.
So it is time to become whole again, in other words: to heal. And we can. Meanwhile, I have become even more convinced that healing is available.
Oh, and how I am doing now? Not cured. But still getting better, slowly but steadily. I am still doing exercise, but also working on my ‘internal’ changes, dealing with the trauma, moving back into my body, looking for flow and passion, appreciating myself without judgement, constantly investigating new perspectives on healing.
To be continued.