Jason Parry - Dislocation/Subluxation Management or I'm Just Popping Out for a While
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- Опубликовано: 9 июл 2024
- General session from the 2017 EDS Global Learning Conference (Las Vegas) on Saturday, September 9, 2017 by Jason Parry, “Dislocation/Subluxation Management or ‘I'm Just Popping Out for a While’”. The presentation slides are available from www.ehlers-danlos.com/2017-ed.... A transcription is being prepared, and will be linked there and here.
I agree with what your saying but there’s another side to it too. Especially being young, is that if you don’t go get it documented IT NEVER EXISTED and then you get the doctors who for lack of better words say it’s PSYCHOGENIC and there is no proof of the severity of your condition and everything is dismissed and overlooked. Also no justification for your pain problems and doctors always think people are drug seeking when in fact alot of times that is not always the case. Alot of times patients go many many of years undiagnosed due to all of the above issues and doctors lack of knowledge of conditions because some conditions are considered “rare” in medical terms means “oh we don’t need to learn about this.”
You sound exactly like me, they continued to overlook my spine, saying that my muscles are not strong enough, to work on the muscles, yet I served 3 years, had over 160kg on my back for long periods of time, went to work one day, and boom, 2 discs herniated at once, then a few months later, another one, and all they want to do is cut the nerve or fuse the spine.. yet, all my joints hyperextend, and recently all my joints hurt, like a dull aching pain that doesn't really go away. The most recent visit gave me only nsaid and "rest" like I understand the whole get through the list of people today, but what happend to patient concerns? I ask them a legitimate question, I get 5 year old answers back. Other issue is that there's only 2 specialists for EDS, in my country.
So sorry to hear your story. It’s unfortunate that people have to suffer like this and made out to feel like we are making it up. Your right they just try to push through patients. I have had doctors tell me that if your a complicated patient they don’t want to see you because they could be making more money on their 15min visits versus the one patient for 30-60min. So they minimize it just to get you out of the office. I have maybe seen one case that a back surgery went well. My mom had 3 fusions and they all failed. She wishes she would have never gotten it done. The cutting of the nerves is scary because you may not know when tour actually hurting yourself. Keep pushing forward if they seem dismissive move on to the next, not worth wasting your time with the narcissist!
So true
I’m 75 yrs old and still, my thoracic spine subluxes, so I have learnt to just be quiet and in a comfortable position. Pain medication often upsets my tummy now so a new and better pain management with pain killers is needed. It takes about 3 days to resolve to a degree that I can get on with my life, except I cannot do the pincer movement with my arms for very long, so washing up the dishes is enough then a rest.
You can make the nausea softer by eating a meal or finding out if it's too much acid or too less, ie lemon or milk. But also take into consideration if your medication reacts to acids or bases.
Been bodybuilding since I was 14 and at 19 started with subluxations in my shoulder which resulted in a labrum tear, I strengthened scapula and rotator cuff muscles which helped but I’ll have to live with the tear, I’m 29 now and continue to bodybuild never let the injury stop me just train smarter now, eventually I’ll have the surgery if I can’t do the things I need to do
Thank you for posting this. Subluxations are a part of my every day life. Dislocations not too often. This was very helpful.
Yes mine too thanks for this
I agree completely. My hips have subluxations frequently and positioning myself a certain way and relaxing they slide back in. I am so grateful for everyone that gives any information that is helpful. You are awesome.
U support your knee joint and lean over the hip area?
Do you have any tips about how to position myself?
@@ele6833 if you are trying to have your hip settle back in, I lie down on my back on something firm and relax the best I can. My hip will gradually let gravity takes its course. Trying to relax when you are in pain is hard, but essential to let it slip in. If I am walking and it slips out, this is the worst, but I tilt my good hip and try taking another step with the hip that has slipped. If you can push past the pain, it will snap back in. That hurts more, so you might want to pause and mentally prepare for the pop and nerve pain that goes along with it. I wish I had an easier answer, but that’s what has worked for me. Also doing exercises everyday for hip flexor. I hope this helps❤️
I wish i could marry this men he has so much knowledge about my condition and seems so funny aswell. I’m watching this while having a dislocated shoulder and my doc is on holiday but he made me smile in this video so thank you 🙏
My wife with hEDs was one dislocation away from permanent damage. had she had no gone to A&E, she would have never been referred to the surgery she required to save her knee.
I wish I had this information 5 patellar dislocations ago. Happy to have it for the future.
So true - happens to me with sublexations, almost every major joint. It’s hard not to panic when the pain happens. Now I’ll try his steps
Nice but where is the video that shows the therapy
In the ER of Highpoint Health in Lawrenceburg, IN, they wouldn't even give me an ice pack. They just told me that my intense pain was disturbing other patients.
Thank you for this.
I have very lax shoulders and it's hard to stay calm a week into a mild subluxation. I don't even have bad ones. It's still so, so hard.
Tai Chi is great for proprioception training
So helpful
Hi Jason, what do you do when a joint won't go back in? I went to ED for cardiac things. While I was there I got them to look at my shoulder as my arm went numb. This one is the A.C. joint. I'm more used to the GH dislocations. Anyway, I was told they can't/won't get it back in. 2weeks later and it's still out and still impinging on the nerve. I've tried the usual things as listed on your fact sheet but it's still not going back, has reduced to a grade 2 dislocation but is still out and now the GH is joining the dangle. Do you have any tips or suggestions for what to do now? Thanks
Chelle S ugh I just found out my 5 year old X-rays show AC joint separation which makes sense to my pain, I hear you.
Try not moving at all with pain killers in the best position you can find, at least in that position, probably in bed with cushions for at least 24 hrs.
13:20
Just got my cast off... now I have ligament, tendon & nerve damage
ooh.. good to know Iv'e been dioing it right. =)
Thank you for sharing ♥️ from Gafsa Bux 🇿🇦 ♿ 🦓 🌈
Can a subluxed joint go back in place right after ?
That happens to me a lot. In high school, my hips would sublux all the time, and since it runs in my family, I didn't know it was a problem. I could just stand up straighter, or sometimes just bend my knee and it would go back in place. Thankfully that doesn't happen as often anymore.
Prolotherapy is the hope for EDS. Please look at Dr Ross Hausers utube videos. He and his staff are knowledgeable & help many EDS precious patients.
My dad and I have always been able to sublux our hips on demand with little to no pain, and we didn't think much of it. But now I'm at physio, and doing simple exercises have helped to make it harder to sublux it. Like it doesn't happen without me forcing it now, which I only did because a doctor didn't believe me, and I needed him to write a letter to the connective tissue clinic for me. I use heat a lot though, I have some of those heat packs you click, and then boil to reuse, as they heat up quickly and I don't need a microwave, as if I'm in public, I don't have access to heating appliances, but I can stick a reusable hand warmer in my pocket and get an hour or two of heat.
But I'm glad I have a physiotherapist who does manual therapy. It's very gentle, massaging the area to get things back into place. I've had pinched nerves and manual therapy seems to be the best way to do it. It's much better than what doctors and chiropractors do since it's slowly moving things back into place and it takes longer. I definitely suggest that if it's an area you can't treat yourself, like for me, that's been my neck from turning my head too quickly when trying to look behind me.
Q: Is it normal for a pattela to be moved from side to side by hand.
Just don't do it.
I also want to know
I get the party tricks one 😂
"Did you move without thinking?" how to know u have EDS 😂
Exactly! Couldn't have said it better myself. 😂
I have had dislocated my shoulder so badly I have to be unconscious for several doctors to put over 100 pounds of pressure to relocate it. There were tears and scar tissue. It was not going to relax back in. The blame discourse is so difficult to listen to.
Omg