Chiari and Ehlers-Danlos Syndrome

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)!

Hi Unwritten! Time went by fast I can’t believe you have your appt tomorrow then mine is the following day! I also have concerns about possibly having EDS or CCI since I have also been researching it? Were on the website did you find the info on EDS I haven’t run across that and would like to check it out? Do you have plans on seeing another specialist soon to get a second opinion? I haven’t got that far yet but have read that we should but I will have to go out of state since Dr.B is the only specialist in Cali from what I’ve researched? Take care and I pray you get the answers you need tomorrow! Keep us posted I can’t wait to hear about your appt!

Hey Lili! Well, I don't see Dr. Batzdorf until next Thursday the I guess technically that makes him my second opinion. ;) Tomorrow I'm getting my first opinion from a Chiari specialist--I actually made the appointment with him before I got approval to see Batzdorf. I'm seeing Dr. Anthony Virella, who studied under Batzdorf apparently. Here's his webpage:

I've seen EDS mentioned on various community groups as well as various Chiari pages. Actually, Dr. Virella mentions it on his page, too.

Of course I'll keep you posted--and let us know how it goes with Batzdorf!

Oh yes that’s right I did come across Dr. Virella when I started looking for specialists I like how he studied under Dr. Batzdorf! That’s great your going to see him too! I have read about EDS I meant on Dr. Bs website I didn’t word that right lol! I will check out that web page you posted thanks! Take care!

Have you herd of POTS Postural orthostatic Tachycardia Syndrome ? it is a form of Dysautonomia and causes heart problems. Check out .

I believe I have both. I have not been diagnosed with eds but everything I get (joint related) the doctors always say you are too young.