Conversations With Professionals: Orthopedic Concerns in EDS and HSD 

Disappointed to hear the feedback on prolotherapy as Mayo Clinic suggested that to me 12 years ago and it’s been a god send. It really needs more of a chance to be studied and understood and not immediately knocked down when there are valid studies supporting it. We deserve and need alternatives to surgery

I wonder if any orthopaedist I've been to has seen these. I was told I might need spinal surgery for scoliosis when I was a kid, but I grew out of it. The fainting started, the heart failures from syncope, constant joints coming out... but everything was a Good Thing because I'm really good! at being athletic! Martial arts, cheerleaders, I'm just *naturally good* at doing this stuff! ... hahahahah everything hurts so, so much. I don't want to just take pain meds, which make me sick anyways. I want to find out what exactly is wrong and do what we can about it, not just be lazy and brush it off as hypochondria (I got a referral to a psych mailed home because I refused one in the office.) or drug-seeking (another main thread.) I've learned more about EDS from these videos than anything and am slowly learning to be the doctors I don't have.

Hi, I have so many questions for you on this talk. I liked some of the Information, but feels that there was also some misinformation. First, you mention physical therapy and exercise as very important, but have either of you done PT or workout with joint pain, dislocations, and tendon/ligament tears? It causes pain as in injury, not the good pain from working out. Also, most insurances with allow 5 or so PT appointments at most and none of them know about EDS. It’s very frustrating and discouraging for any help with recovery. Also, why didn’t you discuss surgeries and the consequent of degeneration at adjacent joints/tendons/ligaments? This is a huge concern and so is recurrence of the Injury. Also after a failed surgery with EDS, most surgeons won’t touch that joint again don’t want to operate and attempt to repair it. I’m also wondering if I’m Europe they have the research on PRP or stem cell injections and do they use them successfully? I find that European health care actually cares about EDS. That’s not the case in the US except for a few amazing doctors that won’t accept new patients. Thank you

Could the Ehler-Danlos Society put together a printable one page awareness and education link page that we could all print like 20 of and take with us when we go to the ER or PT or any of our many specialist to make sure everyone is on the same treatment plan since we can't afford to go to the one clinic i heard of in the US that treats you as a whole body under one roof. Something we can all share on social media or give to family during may awareness month that helps explain and break down things but on just one (maybe front and back) non overwhelming page of info. I send ppl links and post things but noone researches because there's so much info out there and they don't want to do the work because it dosen't affect them.

I’m not entirely sure why the only spinal issue mentioned in relation to hEDS is always scoliosis? Couldn’t you use a more generic term for various forms of spinal collapse? I feel severely side stepped because I have spondylolisthesis , but no one knows what it is. In my teens, spinal surgeons looked at it not knowing what the hell they were looking at, and sent me home. Later on, a fusion was performed. Yet I never even got a name for my spinal condition (let alone the EDS). I think some interventions in my teens could have improved matters for me. I’m beginning to think I needn’t have suffered from such a dreadful deformity.

Thank you for this video. It was very clear and understandable.

There are about 50 peer-reviewed RCTs now re: prolotherapy on pubmed alone, and professional organizations largely focusing on hypermobility and joint instability (such as HHP and IART). It's frustrating that it is dismissed out of hand without consideration. It also is very misleading to say that it is only done in an unregulated way when the University of Wisconsin has been providing it as a well-regulated therapy in its clinics for decades now, and has offered training and support for licensed MDs and DOs (as well as full informed consent, and support, and at least as supported in these clinics for patients as any other treatment, such as outpatient surgery, steroid injections, physical therapy, and so on). Moreover, in Wisconsin insurance companies and even Medicare and Medicaid have agreed to cover it for certain ligament and tendon and OA procedures, and with authorization I know many patients, including myself who have gotten it to cover support after surgery failure or to avoid surgery failure in EDS. I think it is fine for professionals to say they do not know or do not understand it -- but I hear them consistently repeating misinformation about it. They talk about it as if it is delivered in dirty clinics with reused needles, and I suppose anything is possible with anything (a surgery in the back of a vet clinic or someone giving injections with dirty needles) -- I have led a worldwide support group that has over 2000 HSD/EDS patients in it and in the US at least I've never heard of any of the licensed doctors reusing needles or doing anything inconsistent with safety guidelines or injection procedures, so to hear this surgeon talking about it like this is disconcerting when it's clear she probably has never met a prolotherapist. They work out of universities around the nation doing research -- there's even a well-respected doctor and researcher at Harvard. These researchers and doctors are everywhere -- they have professional organizations just like surgeons do to provide best practices for patients -- their training is extensive, and they carefully do all of the research that they can.

All this is great information, but still useless concerning NHS dr's who need to refer EDS patients to aware specialists, some professionals I've seen do not believe EDS is real. My body is literally falling apart from head to toe & the only thing I'm being told is to try standard physio to strengthen, that is done by phone & email. I have misalignment in multiple places & dr's are claiming stupidity. I've also been told on multiple occasions to go a&e when my joints have dislocated & I've rang for pain management after I've put it back. GP's need to be educated on EDS care, or learn to learn with their patients. I'm getting so frustrated with my own.

For what it's worth: I had microfracture surgery on my lateral femoral condyle (pre hEDS diagnosis) and it was very successful. the cartlidge had deteriorated and was basically shredded from hyperbobility and multiple petellar dislocations, and I had terrible bone bruising + Osteoarthritis. So the microfracture solved that issue and greatly improved my quality of life.

I fractured my collar bone, at 34 didn't know it until shoulder injections and he said my fracture was healing, It's not age!

I have an abnormality in my shoulder that was picked up on an ultrasound but no issue showed on an X-ray. Nothing else has been done to investigate it.

Ortho, strengthen core in warm pools!!!! Fix cervical instability, wanna get validated...we need DMX xraus!

The "myth" that EDS gets worse as you age could be better phrased by the orthopedic surgeon as "those with EDS are likely to have a more difficult time with the aging process." At least this way, she would be validating her patients' experiences vs dismissing them as commonplace.

Does anyone have impingements at every joint? Feet especially the nerves are cut off...running up my legs

This was very informative! Thank you! Are there genetic testings that correlate or confirm EDS?

That's me collagen 1A, plus I'm a neuroendocrine system cross over

I stopped counting my breaks/fractures at like 60. I have chronic stress fractures that won't go away. I've been diagnosed either HEDS and I'm wondering if you've had anyone else with such bone involvement? I was diagnosed with Osteogenesis Imperfecta Type 1 until 4-ish years ago (I'm 33 now) but DNA testing ruled that out. I have all of the symptoms of OI Type 1 and am treated with bisphosphonates but am diagnosed eith HEDS. Thoughts? I know there is an OI/Eds Syndrome and I'm wondering if that's my issue. I don't ever have dislocations, just bone involvement and joint pain (back and ribs especially). Edit to add: I've been DNA tested for all of the known EDS types and nothing came back as positive.

HSS said they couldn't help me with my spinal issues.

I’m 55 and have close family diagnosed- I’m quite sure I’m effected, however I can’t afford the genetic testing- I have had a bladder and uterus prolapse- and some bone issues as well- I can still put my legs behind my head-Drs won’t discuss it , they act like it imagined

I’m in trouble in Canada being abused by Medical system Pls help

I was the most hated patient in the UK and now in Canada 🇨🇦 Pls have a conversation with me I can indicate multiple ortho issues and paretial lobe haemorrhage and c2 fracture both shoulders subluxation Sternum separation diaphragm tear Abdominal torsion L spine and T spine issues Other major surgical issues

That in and out in and out is happening through all upper c spine and Brainstem Slipping Speech issues siezure type actions C567 issues getting g much worse Right shoulder and winging bad I’m heavy contact sports and severe hyper mobile all joints My right hand was crushed ina blow popping out 3,4,5 collapse Which was reformed? With titanium rods ? The same force for that incident is the same force I had to Brainstem The mri scan says do not include in the patients medical records destroy by shredding? They refused to tell me and tried to hide 3cm haemorrhage and it says oblique lucency through base of dens fracture Hands and arms Become partial paralysis depends where I look Severe dysphasia And Barrett syndrome now severe The slippage through upper c spine and all scalene muscles and attachments of all muscles I can’t keep myself stable Feel like about to be paralyzed or death

I’m dismayed with how misinformed you are regarding prolotherapy. You don’t even know how to pronounce it… it’s not prolio, but prolotherapy! Are you aware, a NZ rheumatologist , specializing in Prolotherapy for EDS,was presented an award by their EDS society, Lara Bloom also thanked him for his contributions. There’s been a lot more research done to validate these treatments which for quite a few of us, improve our quality of life. Your opinion, comments, are disservice to the community

Stop talking it's useless. Figure out a way to strengthen...little by little. Pay attention to your neck. Look up don't look down at your phone. Strengthen back of your neck . Brainstem and cranial nerves along with blood vessels getting banged around. Posture is everything