Have you considered also the possibility of tethered spinal cord ? Totally need Vein issues better understood in the UK as many EDS sufferers have a VEDS subtype . Also those with Raynauds and other vascular issues need help as the laxity of ligaments is also relative to the vascular stretchiness . Well done on pursuing the help you needed .
Thank you! :) i had complete relief of my symptoms post compressions surgery :) and i had all vascular genetic conditions ruled out with genetic testing, but i do have HEDS and i do suffer with dislocating joints and subluxing so my my joint comllaints have nrver left me. My eds caused my compressions so my insides and veins included are laxer. Xx i have 1 out of 5 of my compressions returned due to scar tissue blocking the vein. I struggle with excess scar tissue again due to my eds 🙈, i also have two newwr lower compression in new areas of my body due to my remaining scoliosis in lower spine curving more, so my curve is no compressing my left illiac vein and due to the rotation of my pelvis due to the curve its also cause a new compression of my venacava i have new symptoms for these and will be having a second surgery in 2 weeks time :) xx
Thank you Emma for making this video. Hopefully it will help raise more awareness along with juliets video at the presentation. From Hannah, Juliets sister x
I’ve had it suggested that I may have this. I can no longer stand for longer than a few minutes. I have constant pain in my diaphragm along with clicking rattling and pulsating where my pulse beats heavily. Does the UK cover this now?
Have you considered also the possibility of tethered spinal cord ? Totally need Vein issues better understood in the UK as many EDS sufferers have a VEDS subtype . Also those with Raynauds and other vascular issues need help as the laxity of ligaments is also relative to the vascular stretchiness . Well done on pursuing the help you needed .
Thank you! :) i had complete relief of my symptoms post compressions surgery :) and i had all vascular genetic conditions ruled out with genetic testing, but i do have HEDS and i do suffer with dislocating joints and subluxing so my my joint comllaints have nrver left me. My eds caused my compressions so my insides and veins included are laxer. Xx i have 1 out of 5 of my compressions returned due to scar tissue blocking the vein. I struggle with excess scar tissue again due to my eds 🙈, i also have two newwr lower compression in new areas of my body due to my remaining scoliosis in lower spine curving more, so my curve is no compressing my left illiac vein and due to the rotation of my pelvis due to the curve its also cause a new compression of my venacava i have new symptoms for these and will be having a second surgery in 2 weeks time :) xx
Thanks Emma - this was really informative. I am hoping we may get some answers about my daughter soon.
aww thats ok debbie :) i hope you can get the answers you need soon! thinking of you and your daughter x lots of love
Thank you so much Emma ❤❤ you are wonderful and your help and support means so much to me and will hopefully help countless others!
Thank you Emma for making this video. Hopefully it will help raise more awareness along with juliets video at the presentation. From Hannah, Juliets sister x
I’ve had it suggested that I may have this. I can no longer stand for longer than a few minutes. I have constant pain in my diaphragm along with clicking rattling and pulsating where my pulse beats heavily. Does the UK cover this now?