Ehlers-Danos Syndrome – Restoring Craniocervical Stability
For people diagnosed with Ehlers-Danos Syndrome, the medical prognosis is exceptionally frustrating.
- “It’s a genetic condition.”
- “There’s nothing you can do.”
- “You have to learn to just live with it.”
WE BELIEVE THAT YOUR BODY CAN HEAL, EVEN WITH EHLERS-DANOS SYNDROME.
Many medical professionals are simply unaware of Ehlers-Danos Syndrome because it isn’t something that can be treated with medicine or pharmacology. And unless your condition is so unstable that it is literally choking off blood flow to your brain, many surgeons and neurologists are at a loss what to do as well.
Indeed, there is no quick-or-easy solution for Ehlers-Danos Syndrome. It great effort and attention to keep your health in check. Nevertheless, before resorting to drugs just to damage the symptoms or surgery, there are a series of conservative options that can help.
How do I know I have Ehlers-Danos Syndrome?
Ehlers-Danos Syndrome is a genetic disorder that affects connective tissues in the body. The consequence is that your joints are hyperflexible Of particular interest are the joints of the craniocervical junction (C1 and C2) in the upper neck because of their unique relationship with the spinal cord. Excessive motion in the upper neck (known as craniocervical instability) can produce a range of neurovascular problems:
- Migraines
- Debilitating neck pain
- Dizziness or Vertigo
- Dysautonomia (e.g., breathing, blood pressure, circulatory and digestive problems)
- Brain Fog
- Anxiety
The list goes on and on.
True Ehlers-Danos Syndrome can be identified with a simple genetic test. However, many similar connective tissue disorders (that don’t have fancy named-diagnoses) cannot be identified with blood tests. Instead, a functional survey called a nine-point “Beighton’s Score is used.”
Beighton’s Score
- Can you bend your pinky finger backward more than 90 degrees (1 point per side)?
- Can you extend your thumb backward so that it touches your forearm (1 point per side)?
- Can you hyperextend your elbows backward (1 point per side)?
- Can you hyperextend your knees backward (1 point per side)?
- Without bending your knees, can you put your palms on the floor (1 point total)?
If you score 5 or more points, even if you don’t have true Ehlers-Danos Syndrome, odds are that you do have some type of genetic connection tissue disorder that requires extra care.
The question remains, “If I can’t change my genes, what do I do?”
What do you do if you have Ehlers-Danos Syndrome?
There are many things that can be done to support your body and your ligaments if you have Ehlers-Danos Syndrome.
Nutritional Support
The Cusack Protocol involves a series of nutritional support therapies designed specifically to promote tissue strength. In brief, the protocol includes taking liquid Aloe, anti-inflammatory adaptogens (e.g., Vitamin C), probiotics, etc. Also, methylated folic acid (versus Folate) seems to be a major factor for many people with connective tissue disorders.
The research also shows a link between connective tissue disorders and the MTHFR gene, which means that any/ALL vitamins taken into the body need to be the methylated form. Otherwise, your body cannot assimilate the vitamins into your tissues properly.
TMJ Specialist and/or Craniosacral Therapist
The function of your TMJ (jaw) and cranial bones has a profound impact on the motion and stability of the ligaments in your upper neck (known as the craniocervical junction). Even if you teeth come together perfectly straight, if you have an overbite, clicking, popping or grinding in your jaw, this stress transmits into your upper neck, which can aggravate the ligaments and neurovascular structures in this area.
Think of it like continuously poking a bruise. If that happens, things never heal or stabilize properly. For this reason, a neuromuscular dentist is a key specialist to have on your healthcare team.
Similarly, craniosacral therapy can help maintain healthy flow and function for a stress nervous system.
Craniocervical Care
A specialist known as a craniocervical or upper cervical chiropractor focuses on the motion and stability of the joints in the upper neck. Unlike general spinal manipulation, there is no twisting, stretching or cracking in the neck (which is usually not a wise idea at all when dealing with Ehlers-Danos Syndrome.
Instead, the procedure involves a series of precise diagnostic tests (either a DAX or CBCT scans) to determine the exact degree of misalignment in your neck that can be causing excessive mobility in other areas of your spine. It is a gentle and specific approach that works toward promoting stability and normal function in the upper neck.
Prolotherapy and Regenex
We have saved this one for last one purpose. Indeed, some people with Ehlers-Danos Syndrome or whiplash disorders have significant damage where the ligaments of the upper neck are torn. However, injections should usually be reserved as the last treatment option.
As we mentioned in the section on TMJ and Craniocervical chiropractic care, the ligaments of the upper neck are not always torn or unstable. Instead, they are continuously stretching because the TMJ or the joints of the upper neck simply are not moving the way that they are designed. If so, injections can help … BUT those joints still do not function properly, the injections may not work as well as they are meant to.
On the other hand, if you find you do experience relief with a neuromuscular dentist and upper cervical chiropractor, but your condition still does not stabilize quite as long as you hope/expect, this is the right time to consider injections.
In other words, try the conservative approaches first, then upgrade to more intensive treatments afterward (if necessary).
Upper Cervical Chiropractic in Spokane, Washington
Clear Chiropractic is a specialist center with two locations in Spokane, Washington. Our focus is on the health, function and stability of the upper neck. The principal approach we use is known as the Blair technique.
Every human being is built differently on the outside and inside. Therefore, when we take these individual differences into account with proper testing (e.g., neurological assessments, DAX and/or CBCT scans), we can design a treatment protocol based on your unique anatomy and needs. When we do so, the procedure is extremely gentle and specific, like turning a key in a lock.
This is one of the major factors that makes the Blair technique and upper cervical care so different from other forms of chiropractic.
(So, YES, it can be performed safely for people with Ehlers-Danos Syndrome).
Even if you have tried physical therapy, massage and generalist chiropractic before, the Blair technique is different. If you are looking for a chiropractor in Spokane, visit our home page more information. To schedule a new patient appointment with our Mead (north Spokane) or South Hill offices, complete a new patient request form here or call us direct at 509-315-8166.