Ross A. Hauser, MD presents "The Consequences of Joint Instabilities in hEDS"
HTML-код
- Опубликовано: 21 фев 2019
- Ross Hauser, MD is the Medical Director of Caring Medical Regenerative Medicine Clinics with locations in Fort Myers, Florida and Chicagoland. Learn more at: www.chronicpainpartners.com/w...
Oh my God is this the best most thorough explanation of EDS it took 41 1/2 years (Of medical hell) for me to get my diagnosis is 2014 and also my children (all adults now) followed. We all present differently but myself and my youngest are barely getting by and my middle daughter though her knees and hips sublax all the time she is in less pain than myself and my youngest (my son). I just want to say that I am almost in tears because everything this doctor says I know, I feel, and I’ve lived but have ZERO doctors here in Fullerton California who have a clue about anything at all with EDS and they actually treat me like I am a bother to them. I keep fighting for decent care because I know my children will one day be as bad as I am and I refuse to allow them to be treated as I have. Thank you so very much for this presentation and thank you to this phenomenal doctor who obviously cares about his patients with EDS. I have yet to find any like this other than my pain psychologist. He is truly a blessing to Ehlers Danlos patients.
How are things for you these days, Lisa?
I am so sorry. Pretty much when and why fighting so hard to find a path through this. I understand. Just diagnosed at age 68 almost. Deteriorating quickly and painfully. This is not OA and FM.
We apology for the noise on the video. Content is still very clear. Best to turn your volume down.
You should consider redoing this video it's really awful to listen to
I found this information extremely helpful. Thank you so much.
I think it would be nice if ever possible to get one of the more public, non-profit docs who do a lot of genuine peer-reviewed research on not just prolotherapy but other forms of regenerative medicine too. I've personally had phenomenal results with it, but I know that a lot of the claims in the video are a bit overstated and I think for good reason are going to be met with a lot of skepticism.
I think the more academic-based, and university based clinicians who research these things are a bit more careful about the way they speak about it. And I get that semantics are semantics, but I think they do matter in terms of how patients are going to trust going about this. None of the doctors I've ever worked with would ever use the word "cure". They definitely have noted that it can remediate things to a degree like comorbidities such as dysautonomia symptoms or MCAS, but by all medical and clinical definitions they may have symptomatic improvements that patients are incredibly happy with but they are not "cured". Their joints are not "cured", their EDS is not "cured" and so on.
And even and especially by his definition, EDS patients do learn to have different and low expectations so to have an over 90% cure rate listed but some patients may not be walking daily because they just wanted a minor decrease in pain, but that was their goal, I think most researchers would find such claims misleading.
I've also just found personally in support group work that we completely and utterly need to holistic support and not "just prolotherapy" in all patients with EDS. Patients with EDS can fall apart very quickly but they don't just get better and cured with some shots (even many I know from this very clinic)... they often have to work on pain and nutrition management, dysautonomia and dystonia management, muscle retraining, joint stability and rehabilitation after the ligaments (and tendons and muscles that can also be weak in EDS) have healed, along with cartilage... and also can have issues with healing if hormones or MCAS is ignored since it taxes the immune system too. Sometimes EDS can be a massive rollercoaster ride, and prolotherapy can be an amazing supplement to that but the very few cherry picked stories here do not represent patients from this clinic or across the world receiving "comprehensive prolotherapy".
I do hope some day it gets on the map because it's important, but we're going to need more accurate speaking researchers I think in order to really bump it ahead, because sadly I know many will walk away from this - including those who love therapy thinking "yeah right!" Or even worse some will go in thinking "Oh I'll only need 6-8 procedures and I'll be cured!" and will have to face a hard reality that it doesn't really work that way.
Sheila, We understand your concern. We are very cautious about presenting some topics on our webinars. EDS Exercise, Cannabis and this one were webinars with major hesitance. Since we have had questions and requests we thought this was appropriate as an overview. Note our "disclaimer" says this is "information" not "advice". Thanks for your comment.
@@edsawareness1 No it's not a criticism of you - you are phenomenal. It's the nerd in me :) I think you should do all of the others. In the meantime maybe some of the local docs in the area who have been doing research for years will actually start to feel comfortable talking about it soon. It's not your fault they tend to be a lot quieter when they are researcher.
So you have EDS and tried prolotherapy?