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Any EDS'ers out there?

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    Any EDS'ers out there?

    anyone else suffering from EDS? I just found out and a long with Chiari I am one messed up equestrian lol! I am not competing as a Para Equestrian for now, I am curious to see if there is anyone else out there with EDS... It would be awesome if you had Chiari too. I am looking at going to see a True Chiari and EDS specialist at the first of the year but until then I deal with all the stuff that goes with it. Since I haven't been able to sleep tonight I figured I would ask since the internet never sleeps!
    MIDWAY SOCCER 08' First Season!!!!!!

    I have EDS, Classical Type with a vascular variant. I do not have a Chiari malformation, but I did have a stroke at 19 from the EDS and I also have Secondary Mast Cell Activation Disorder. I also have scleroderma en coup de sabre which contributes to my poor tissue quality. The EDS has had a huge impact on my riding career. I am currently out of the saddle (well, technically...I do get on and ride without stirrups here and there) until January; I ruptured my anterior talofibular ligament, the insertion of my peroneus brevis and I have a partial tear of the peroneus longus in the left foot/ankle. This is after having a complete reconstruction of this foot/ankle in 2010. I have surgery to repair this in early September (I'm too busy this summer to take care of it now so I am in a bivalve cast until then!) and then I'm laid up in recovery until January.

    I've been informed that for me there is a 100% failure rate of this surgery and I should expect to get 2-5 years out of the repairs. The only reason they are doing the surgery in the first place is to buy me some time to see if there are any new treatments or procedures that come out during that time. Otherwise, once the ankle fails again, I'll end up with a full fusion.

    Once I get through that surgery, I have a badly torn labrum in my right shoulder to contend with as well as some damage to the supporting ligaments of the TMJ, but both are less important than the ankle at this juncture.

    For me, the EDS has been progressive and degenerative which is very frustrating. I am constantly spraining, dislocating, or tearing things and it makes day-to-day living a chore, but I keep chugging. It will always be a part of my life, but I will never let it rule my life. Even now, I am doing everything that I want to do regardless of the disability.

    Best of luck to you and feel free to PM me if you ever want to talk about it.
    Nine out of ten times, you'll get it wrong...but it's that tenth time that you get it right that makes all the difference.


      Original Poster

      I have hypermobility type I get sprains, dislocations and tears plus stretchy skin. I also have a bit of CCI going on I'm waiting to get in w a specialist about getting decompressed and fused! For now I'm extremely lucky as I don't know how long ill physically b able to ride for. I have degenerative disc, stenosis, Scotty dog fractures, reversed curvature of the c spine and the list goes on... I hate RDS CCI and Chiari
      MIDWAY SOCCER 08' First Season!!!!!!


        There are quite a few of us. If you search under Ehler's it will pull up a bunch of the old discussions. As far as I know I don't have Chiari, although honestly I haven't wanted to explore it further. I'm currently recovering recovering from complex knee surgery, and my back/neck is not in great shape, but I'm better off than many.


          Dont have eds but rheumatoid arthritis and just built bad! My tibias were twisted inwards in utero so below the knee im not aligned. Then have weak joints that love to pop out so i fall alot. Foot drop is fun! Broke bones steping on my own/same foot.

          Ra is mostly my hands but it weasled into my lower back and hips, add hip bursitis that wont go away(i keep falling on that flippin hip!)

          Also have a narrowing in the disks in my neck, its genetic also in that spot my spine curves deeper than normal( baseball sized swelling when im sore at the base of my neck)

          Best is im only 23 yay me!

          Plan on doing para and open , i need loop reins so my reason for being graded. Im a IV but my coach and i believe i should be a 3 my balance is quite bad, but tester got me on a good day .... Cant travel 6 hrs randomly to be tested at a show... They happened to be in town.

          Pm email me anytime! Even if its a pity party im in! Im soo glAd my bff lets me whine and rant at any hour, you need someone like that!
          Beyond the Ring-para dressage, training, coaching

          Proud Team Four Star Minion! Renegade for Life!


            Another one here. Like Vali said, a search will yield results. I'm not riding. Taken up dog agility where I've met LOTS of horse people retired due to being physically or financially broke. Currently on a break from agility and working with a PT. Agility hurts, too. It sucks.


              Original Poster

              I really don't know how long ill be able to ride w chiari! I've honestly considered agility if I can't be pain free. Do you find certain stirrups help you or anything like that?
              MIDWAY SOCCER 08' First Season!!!!!!


                Yes. HEDS, chiari, and upper cervical instability. Had tethered cord release in Feb. Plan is to wait at least a year to see what improved. With EDS AND CHIARI you cannot use anything less than an expert. EDS changes EVERYTHING in ways drs can't even fathom. Expert list is The Chiari Institute in Great Neck, NY. His new procesure a friend had done and she was rokd once healed NO restrictions.

                Other option is Dr. Fraser Henderson in Bethesda, MD.

                EDS expert , Dr. Clair Francomano at Greater Baltimore Medical Center.
                "You are a child of the universe, no less than the trees and the stars;
                you have a right to be here." ~ Desiderata by Max Ehrmann


                  Original Poster

                  I am going to see Dr. Henderson in MD in September I am considering quitting riding because of the worry of messing things up... I getting checked for a TC and I am thinking I have one based of symptoms we shall see
                  MIDWAY SOCCER 08' First Season!!!!!!