Hey there everyone. I've repeatedly come across reports of patients with Chiari who also have Ehlers-Danlos syndrome, and I've started to wonder if I could in fact have EDS as well. Who among us has both? How has your EDS manifested?
I'm wondering because I have several symptoms of EDS, but not some of the more definitive ones. I don't notice velvety skin, haven't noticed slow healing, don't have particularly stretchy skin, aren't double-jointed, and don't have vision problems. I don't think I bruise easily, but then again, I always have bruises (particularly on my legs) and nearly never know what they're from.
My symptoms include:
- Loose joints; I can pop almost every joint in my body with minimal effort, and have always been like this as long as I can remember.
- Probably not surprisingly in light of the above, I have very achey, painful joints. Extensive testing has ruled out things like rheumatoid arthritis and the like.
- Pannus formation on my odontoid bone--it's small, but noticeable. Since I don't have RA, I'm wondering if EDS may be behind its formation.
- Very flexible in my younger years: despite decidedly NOT being any sort of athlete, I was always in the 95th+ percentile for flexibility. I was like that until age crept in during my 20s.
- Dislocation: as a teen, I always wanted to be able to fold myself up, nose to knees. Problem was, every time I tried, my left hip would slide out of the socket and then slide back in. No one believed me, but I know that's what was happening. It wasn't painful, but very weird. It's like my leg disappeared. Nowadays, it's my jaw that dislocates (but also goes back in).
- Mitrol valve prolapse(?) I had an echocardiogram in June (for palpitations, back before the Chiari and thyroid disease was discovered) and nothing abnormal was reported--but I had an echo as a teen and was diagnosed with mitrol valve prolapse then. Now my recent echo just says there is no MV regurgitation. I wonder, though, if the valve is still "flappy."
- Degenerative disc disease: I have had two surgeries at L5/S1 in my early 30s ("You're too young for this") and L4/L5 is also showing some DDD. If I recall correctly, L3/L4 also has some DDD.
- Mild scoliosis first seen when I was 12. It's very slight and it's visible on say an X-ray, but no one would look at me and say I have scoliosis.
- Extremely flat feet. A podiatrist was aghast at my feet. "I see flat feet all day, but...You're practically walking on your ankles!"
- Embarrassingly enough, a pelvic prolapse. My bladder prolapsed a few months after my son was born. That also was met with a huge round of "You're too young for this!"
- Funky stretchy scar thingys on my knees. They always look like I have bad bruises. I thought they were callouses, but now I'm wondering if it's funky scarring from rugburns as a kid.
For those of you with EDS, does any of this sound possible, or does my lack of more definitive symptoms still rule me out?
I ask because I see my first Chiari specialist tomorrow. If he starts talking surgery, he doesn't recommend decompression for patients with EDS, at least according to his website. He then opts for cervical fusion.
Thanks for listening (er...reading)!