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Ehlers Danlos

Exit forum ID Forum Discussion Ehlers Danlos

This topic contains 7 replies, has 6 voices, and was last updated by   Keith Puri, DC September 15, 2020 at 10:43 pm.

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    Beau Bates

      Hello ID crew,

      We have an upcoming consultation with a female patient with lots of musculoskeletal pain and a previous diagnosis of ehlers danlos “syndrome”. Does anyone have prior experience working with patients diagnosed with this? And if so, what did treatment/prognosis look like for them?

      Any comments or recommendations are appreciated. Thanks.


      Adam Holen D.C.

        EDS patients pose a unique scenario. Being a hyper-extensibility condition (assuming the dx was accurate and not inferred), their ranges of motion will likely be full/near, or excessive.

        Which means you can’t rely as much on the range of motion, but still do the testing. You’ll focus more on their symptom (location, quality, severity) and effort during these motions. In my experience they still develop adhesion, it’s just not the same mechanism as the 99% of typical patients in that it’s limiting their motion.

        I could be wrong, but I believe they develop adhesion more so from the muscles struggling to properly stabilize the joint, which hypo or hyper mobility can cause joint damage. Really focus on the feel, find what adhesion you can, but their treatment will likely be early introduction into strengthening.

        Prognosis is dependent on each individual scenario, but the handful that I’ve seen have all done pretty well (50%+ sustainable relief).


        Brandon Cohen DC, CSCS

          What Adam said. Communication is super important in these cases. Be sure to communicate how EDS impacts their ability to heal and that they have a metabolic condition that slows and blunts progress. There is a range of severity with EDS, it is a challenge for sure, but 100% resolution of symptoms is unlikely.


          Beau Bates

            Thank you for the insight, I really appreciate hearing from both of you. From our research, we agree that it is going to be a challenge for sure, but need to help her as much as we can. During her examination I will be sure to communicate how EDS impacts her progress. It will be interesting what we find during the examination and subsequently how much resolution of symptoms we can achieve. Thanks guys.


            Christopher Stepien

              Agreed with Adam.

              Since there tissue is so elastic, very focused strengthening can also help.

              I’ve also been noticing underlying autoimmune sensitivities and emotional wounds for these patients to be aware of.


              William Brady, DC

                Any update on this patient? Did she actually have EDS? Adhesion? Did she start care?


                Beau Bates

                  During her consultation found that she was softly “Diagnosed” by a rheumatologist who thought she could also have it due to a strong family history of EDS, her mother and sister. She stated that he considered her to be more of a “hyper mobility syndrome”, although no further tests were taken.

                  First order Hx:
                  A: 35
                  S: Female
                  Sx L: Neck (radiating up skull/down bilateral arms/bilateral scapula)
                  Sx Q: burning into scapula, tingling into forearms and hand
                  Sx I: 8/10 current
                  6/10 average
                  9/10 at worst
                  Pro: *Any motion, Exercise, ADL’s, Stress
                  Pal: *massage, ibuprofen daily, heat, ice (overly attached to her massage therapist even though pain always comes back)

                  Second order Hx:
                  O: Neck pain since 2012, worse since rear end car accident 2016
                  C: Gradually getting worse since 2016, even more so in 2020
                  Occ: Stay at home mother
                  Rec: Dance, exercise, yoga, play with kids (4)
                  Other: Has 10 month old she carries on her left hip
                  PT Goals: increase activity, decrease pain, figure out what’s wrong
                  MSK Hx: 2013 C3-C6 spinal fusion, 2013 bilateral carpal tunnel release, 2016 Right 1st rib removed, 2020 MRI C2-3 mild disc herniation/C6-7 mild herniation with canal stenosis.
                  General MD Hx: EDS (subtype hypermobile)

                  UCF= 5.7 (23%)
                  CF= 20.9 (35%)
                  CTF= 43.4 (48%) had to take a break due to radiation to the scapula
                  CR R= 73%
                  CR L= 63%

                  Shoulder abduction= 40% with intense burning on the right medial scapula

                  Palpation: Adhesion found at bilateral RCPs, R C6 cervical erector, bilateral accessory. Palpation of the brachial plexus and scalenes was too much just to the touch.

                  Strength was full, sensation diminished on the right in all dermatomes.

                  EDS Beighton test: scored 2/9 for hyper mobility as only her thumbs were able to touch forearms, with all other tests negative.

                  We started care with her focusing on her UCF and deloading her disc as much as possible. After visit 4 she is at 7/10 VAS, 16.7 UCF with continued radiation down the arms and shoulder blades.


                  Keith Puri, DC

                    Great job writing up the case Hx and results thus far.

                    If I put my Monday morning quarterback helmet on, something is not adding up.
                    A few questions –
                    – What is her FAST map score?
                    – What is the Hx behind her C3-C6 fusion and CTS release at age 28, and first rib resection at age 31?
                    – Do you know what type of canal stenosis at C6/7 is present (lateral or central) and if central, is there a measurement to quantify severity (mild, mod, severe)?
                    – Any loss of coordination, trouble with fine motor skills, stumbling?
                    – Does she have a positive Hoffman or L’hermitte’s signs?
                    – Lastly, has she had any recent motion XR views taken (flex/ext)?

                    My Monday morning quarterback Dx impression is leaning me towards central canal stenosis with possible myelopathy based upon her imaging findings, symptom L/Q/I, ID cervical test results, and provocative factors. A t/sp MR could be helpful to evaluate for additional cord compression. Clearing out any relevant adhesions in the upper cervical region should help to unload the motion segments above the fusion. Unfortunately, her c/sp flexion and possible CTF tests will always be compromised due to her 3 level fusion. So be sure to focus more on what you feel vs what you see.

                    Interesting that an RH softly Dx her with EDS-h based on a familial Hx and a Beighton score of 2/9 vs hypermobility spectrum disorder (which is more likely). At some point, it may be beneficial to revisit that Dx as it seems forced. Just out of curiosity, does she have Raynaud’s syndrome, POTS, orthostatic hypotension, or GI issues? If so, there may be an underlying small-fiber polyneuropathy component atop of her MSK findings, biopsychosocial, and central sensitization.

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