Healing Arts for Marfan and Chronic Pain

I recently helped to organize a Healing Arts workshop for the National Marfan Foundation annual meeting, which was held in Boson this year. More than 30 participants heard and asked questions of a panel of complementary/alternative practitioners who discussed managing the symptoms of Marfan syndrome—particularly chronic joint pain—with Tai chi, the Alexander Technique, acupuncture, Traditional Chinese Medicine (TCM), nutrition, and craniosacral therapy. Combining alternative treatments with conventional care is called “integrative medicine,” and putting together your own personal healing combination is an excellent way to take responsibility for your health. These healing modalities have applications for anyone suffering from chronic pain.

The workshop began with Tai chi and Alexander teacher Jamee Culbertson leading us in the opening movements and breathwork of a Tai chi form that is thousands of years old. Research has found that these ancient, graceful, meditative movements improve balance and reduce falls. As we breathed deeply and moved slowly in unison, the room seemed to transform into a kind of “sacred space,” as the group united with a shared purpose and energy. With two volunteers, Jamee then demonstrated how the Alexander Technique reduces pain and eases body movement through simple awareness of habitual actions that may be restricting activities. Both Tai chi and the Alexander Technique are gentle, non-invasive practices, and do not stress joints or ligaments.

Eurydice Hirsey, a trained chiropractor and craniosacral therapist, then talked about the use of craniosacral therapy to ease pain and improve movement by enhancing the circulation of cerebrospinal fluid. This is done through gentle touches on the head and sacrum, following the body’s own natural rhythms and movements, without force or pressure. While chiroporactic may not be indicated for most people with Marfan syndrome, the light touch of craniosacral therapy can ease tight muscles and reduce pain, even in those who have had spinal fusions, by focusing on other areas of the body where movement is possible.

Acupuncturist and researcher Stephen Cina shared his orthopedic investigations into the nature of connective tissue and its possible relationship to the meridians (energy pathways) used in Traditional Chinese Medicine. A practitioner either inserts tiny needles into “points” on the skin that correspond to the energy meridians (the needles are usually painless), or applies pressure with the hands (acupressure) on these same spots, in order to reduce pain. And naturopathic intern Amanda Daeges–who has Marfan syndrome, talked about maintaining integrity of connective tissue through what we eat and drink: specifically whole foods and whole grains that include nutrients and trace minerals. She also stressed the importance of drinking enough water. (Divide your body weight in half to find out how many ounces of water you should drink each day.)

All of these complementary modalities (and many more) are described in detail here, has well as profiles of practitioners and personal experience stories.

VERY important: Before you try any complementary/alternative practices, always check with your doctor.

6 Comments

Filed under acupuncture, Alexander Technique, Chronic Pain, Health, Marfan Syndrome, Tai Chi, Traditional Chinese Medicine

6 responses to “Healing Arts for Marfan and Chronic Pain

  1. Missy

    Hi Roanne, I was present at this workshop and, let me tell you, it was wonderful. A supportive and hopeful environment was created. The information presented and which you so eloquently summarized here has provided a base and several avenues for my family to explore as we work to maintain (perhaps increase) our own vitality and the quality of the lives we are living. I have a 3-year old son with Marfan Syndrome and I know as we begin to incorporate more integrative therapies into his own care, he will blossom and I feel he will embrace the management of his own health as he grows and matures.
    Thanks and all the best. I am in the process of exploring this site and other posts you have made. It has been a pleasure. Missy

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  2. Thank you, Missy. I’m so glad this was helpful, and thank you for contributing your energy to the workshop. Please report back on your son as he blossoms! –Roanne

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  3. Roanne,

    Cranialsacral (especially DO’s who are well-versed in Cranial Osteopathy) can help with a variety of “mental illnesses”, and of course Traditional Chinese Acupuncture has shown great success with anxiety, and depression.

    Thanks for posting.

    Yours in wellness,

    Duane

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  4. Thanks for great article, you are the best, keep writing.

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  5. Lynn Kelly Evangelista

    “While chiroporactic may not be indicated for most people with Marfan syndrome….. ”

    Who decided this?

    Has anyone heard of non-force chiropractic? There are many chiropractic techniques that do not involve rotation or “cracking”.

    Do your homework before you publish faulty opinions and steer people away from therapy that can be helpful.

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  6. Lynn – the operative word in my post is “may,” which, as you know, only suggests possibilities for people to consider. And if you read my blog carefully, you will see that I always advise people to check with their doctors before using any therapies. You are right that there are many chiropractic-related techniques that MAY be appropriate for people with Marfan. For example, I regularly use craniosacral therapy, a gentle, non-force procedure performed by a trained chiropractor, and have found it to be helpful for muscular pain. However, NO ONE—particularly those with medical conditions— should use any therapies without a doctor’s close supervision.

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