October 2013 aged 24, I was diagnosed with Generalised Dystonia. The symptoms started in June 2013, from the legs which gradually spread upwards to the rest of the body. At first, no one could see that there was anything wrong with me but I had a strange feeling of muscles moving uncontrollably. I thought it was a temporary condition that would soon disappear. However, it gradually spread to the rest of the body and once it reached the jaw muscles I became very anxious. I started to worry that the condition may be permanent and cause serious damage to the body.
From then on (September 2013), the symptoms became visible – quite often I had uncontrollable shaking and twisting, hypertension, panic attacks and vertigo. Not only that, I had episodes of pain randomly attacking different parts of the body and it even got to the point where I thought the condition might be life threatening. I even left last words for my mum as I thought this might be the end. The feeling of despair and hopelessness is almost indescribable. I was lost in complete darkness. At times, it felt like I was on the edge of a precipice with no one to help me and nowhere else to turn.
Finally, with the help from my mum, I made a resolute decision to receive treatment in South Korea although I was unsure whether it would be successful.
Miraculously, on 21st Jan. 2014 I returned to the UK after being fully cured of Dystonia and TMD. It may sound overdramatic but I felt responsible as one of the fortunate ones, to share my experience and make people aware that Dystonia is curable. Thus, I decided to make this blog in the hope that it would be helpful to those (and their families) who are facing struggles every day.
Welcome to the Cure for Dystonia blog. I am 24 years old, living in the UK with a full time job and was sadly diagnosed with Generalised Dystonia October 2013. However, I was fortunate enough to find a cure and by January 2014 I was able to return home to the UK having fully recovered. Through this blog I aim to provide and share as much information as possible with other Dystonia patients. Here is a guide to get the most out of this blog:
My story– two subsections: my story and diary during treatment. ‘My Story’ describes the development of TMD and Dystonia and the struggles I had experienced up until the treatments. ‘Diary during treatment’ then follows but I suggest that you first have a read of the Framework and Treatment sections to aid your understanding. It is still a work in progress but I will be uploading regularly so readers can find out about my ups and downs up until the end of my treatment process. I appreciate that sequencing may be a problem for some readers (i.e. the first post seen is the latest post) but I recommend reading from the earliest date which can be done by scrolling down to the end of the page and navigating to the oldest post.
Framework – explains concepts and theories behind FCST (Functional Cerebrospinal Therapy). It is recommended to read the subsections in chronological order.
Treatment– explains all the available treatments at Dr Lee’s private medical practice (also known as FCST clinic)
Pigeon Hole – miscellaneous information, tips and resources
Clinical Cases – videos of successful treatments at FCST clinic
Brief history about myself:
April 2012 – Discovery of TMD (self-diagnosis)
March 2013 – Medical Diagnosis of TMD
April 2013 – September 2013 – Dental Treatment for TMD
June 2013 – Symptoms of Generalised Dystonia start
October 2013 – Diagnosed with Generalised Dystonia and dental treatment discontinued
October 2013 – FCST (Functional Cerebrospinal Therapy) started
January 2014 – Full recovery from Generalised Dystonia and relief of TMD symptoms
Purpose of this blog:
It is common for patients suffering from chronic disorders to try many different types of allopathic and other alternative treatments. However, they are often let down after finding out that they do not have great or long lasting effects. I too have been through this – for years I had symptoms of TMD, which I didn’t identify until 2012, and I had tried most treatments available from medication, physiotherapy, acupuncture, chiropractic to sports therapy. Although some of these attempts were helpful, the symptoms would always return and I would soon be looking for the next best option to prevent the deterioration of my condition.
Consequently, I became aware and saddened by the fact that my life was all about consuming time and energy on finding effective (and sometimes expensive) treatments while my friends seemed to enjoy their youthful and passionate lives. Then, when Dystonia started, everything took a turn for the worst and my chance of living a normal life became slim. However, after 4 months of intense treatment, I finally have something to look forward to; a life without pain and limitations.
I would introduce FCST, as ‘clinically proven with sufficient scientific backing but one which lacks acknowledgement by the majority due to domination of existing ‘mainstream’ medicine’. At first, it was my mother who trusted in this treatment and convinced me to consider it as a final resort. I was sceptical but as the therapy progressed I came to realise that this was potentially the final treatment that would rule out the need for any further treatment.
Dr Lee, who treated me, developed this method of treatment. He was actually a patient himself over 30 years ago suffering from paralysis of his left arm. From seeking ways to treat the malfunctioning limb he found that the root cause of the problem with the nerves was structural distortion. But then he had to face another obstacle – an effective way to resolve the structural imbalance permanently. However, he did not give up and after years of extensive research and clinical trial and error; he was finally successful in developing a cure and he named it FCST (which in essence, focuses on TMJ balance). Over the past decade, Dr Lee has been able to actively gather hundreds of clinical evidence which has made it possible to be widespread in South Korea. Today, a substantial number of patients suffering from different symptoms are being treated his clinic every day.
Some readers may misapprehend my intention for this blog perhaps with the idea of promoting the clinic. However, I hope the readers understand that as a former Dystonia patient who has been through the difficulties, experienced the whole treatment process and now regained normality in life, it would be wrong for me to not attempt informing others in need. In fact, I realised it would be difficult to carry on with life without feeling guilty if I decided to sit back because I know only too well the frustration that other sufferers must be experiencing and the feeling of being alone with no one fully understanding what they are going through. For that reason, I am merely endeavouring to introduce this treatment as one of the options that may want to be tried by those who are desperate to live a ‘normal’ life.
This section explains how TMJ affects the spine structure and the nervous system. Subsequently, explanation of how FCST is unique in treating TMJ to other treatments available is provided.
i) TMJ and structure
Movement of the TMJ is very closely related to the second cervical vertebra, C2 or also known as Axis. One might think that when the mandible opens and closes, its movement is centered around the condyle in the TMJ itself. However, this is not the case. According to the Quadrant Theorem of Guzay, the axis of rotation of the mandible lies exactly at the odontoid of C2. (The odontoid is the upward, toothlike protuberance from the second vertebra, around which the first vertebra rotates.) When the mandible moves downwards, this generates a pulling force, loosening the muscles around C2. Likewise, when moving up (i.e., when closing the mouth), it generates a pressure, which tightens the muscles around C2. This means that in an occlusion with decreased vertical dimension will aggravate muscle tension around C2 when the mouth is closed. Therefore, it is clear that distortion in TMJ will affect the position of the Axis too.
Of all 24 vertebrae in the spine (7 cervical, 12 thoracic, 5 lumbar), there is only one vertebra with an odontoid/axis, which is C2. Therefore, the Axis plays a key role in the balance of the entire spine. Together with the TMJ, C2 is the most significant variable affecting the entire spine structure.
So what happens next after subluxation of Axis? The rest of the spine collapses like in the domino effect even affecting position of the cranial bones and pelvis. This is explained by Lovetts reactor relationship.
According to Lovett Reactor relationship, each vertebra is coupled in motion with another vertebra and the pelvis is coupled in motion to the cranium. C1 + L5, C2 + L4 and C3 + L5 automatically move in the same direction (also known as coupling movement). The other vertebrae pairs, for example C4 + L2 move in the opposite direction. Therefore, impact on one vertebra influences other vertebrae in the spine.
Therefore, TMJ distortion causes subluxation of C2 (Axis) which leads to the collapse of the rest of the body structure.
ii) TMJ and nerves
Nine of the 12 cranial nerves are found near the temporal bones from which the mandible is suspended. Particularly, the 5th cranial nerve (also known as trigeminal nerve) innervates the TMJ and are coupled to C1 and C2 (Atlas and Axis). The cranial nerves together control 136 different muscles (or 68 pairs of “dental muscles”) connecting the entire spine. According to Dr Lee, misalignment of TMJ disturbs the trigeminal nerve and it can lead to problems in the rest of the nervous system. Problems in the nervous system may cause abnormal muscle contractions and pain due to central sensitization and wider range of brain plasticity.
Not only this, TMJ distortion which causes subluxation of C1 and C2 can limit the space of foramen magnum (which is an opening at the base of the skull) through which the cerebrospinal fluid circulates. This can negatively impact the body-brain communication and also cause restriction of the jugular foramen, another opening in the base of the skull transmitting veins, arteries, and nerves. Restriction in these openings can mean less efficient brain respiration due to decrease in the cerebrospinal fluid circulation and can also limit proper flow of blood to the brain.
The link below is a demonstration of how subluxation of upper cervical vertebrae restricts the jugular foramen. (Click slideshow in the file)
In conclusion, TMJ is the most important factor which contributes to collapse of spine structure and disruption of the nervous system.
iii) What causes TMJ imbalance?
Many people think that TMD (TMJ Dysfunction) is mostly caused by trauma (i.e. injury) to the jaw. However, there are many other causes of TMD including the following:
Chewing on one side consistently
Neglect of missing tooth
Trauma due to complications of head and neck injury and traffic accident
Bad oral habits
Genetic or congenital problems
Solid foods and chewing gum
Teeth grinding (Bruxism)
Bad habits such as poor posture
When patients first experience TMJ problems, they may feel pain around the jaw area, develop headache or problems chewing. However, once TMD becomes chronic the symptoms are not only concentrated on the facial area but patients start suffering variety of symptoms including pains going down to the neck and back and psychological disorders such as depression and anxiety.
Below is another study carried out where one TMD patient was sent to different specialists and the following were her diagnosis from each of them:
It can be said that TMJ is the only joint in our body which causes such different symptoms between acute and chronic patients. Usually, for other joint related illnesses, the symptoms do not involve much more than pains around the affected joint area. However, studies have found that many chronic TMD sufferers not only experience pains and depression but also indigestion, allergies, chronic fatigue, dry/soar eyes, eczema, difficulties in hearing, loss of coordination, numbness in the limbs and fingers, tinnitus, asthma, cold hands and feet, apnoea, vertigo and many others. This can be explained by the impact TMJ imbalance has on the rest of our body structure and the nervous system as described above.
iv) How can TMJ imbalance be resolved?
There are various dental treatments, surgeries and other practices in both medical field and alternative medicine today but it may be very difficult to find treatments that are effective for all sufferers. So how is FCST different?
Dr Lee’s holistic approach is unique in that he treats TMD taking into account all of the following factors:
Freeway space* (see below)
Position of the Cranium, TMJ, Spine and Sacrum
Ultimately, this treatment aims to achieve the optimal balance (left, right, front and back) from top to bottom of our entire body. Once this optimal balance is achieved in the entire body and patients no longer experience Deflections it is viewed that patients do not require further treatment.
* Freeway space
A freeway space is the space that exists between the upper and lower articulatory members at rest. It is only when we swallow that the teeth make contact in order to create pressure. The space varies from 1-8 mm but most people tolerate a space in the 2-3 mm region. According to Dr Lee, even 1/10 of a mm defect in the freeway space can distort the TMJ (and therefore causing problems with the nervous system). A splint made of hard material, although custom made, does not allow flexibility when there are muscular and/or structural changes in the individuals as a result of wearing the device, making it difficult to settle at the precise freeway space. Therefore, his intraoral balancing appliances are designed to fix this flaw. During treatments he uses special thin sheets of paper for optimal balance (sometimes referred to as zero point).