Chiari and Ehlers-Danlos Syndrome(EDS)

General
1

Hey Fellow Chiarians!

I am Brian, and I am a 43 year old guy living in Colorado and California. I discovered an amazing connection today that I hope will provide some insight for all of you.

I am both grateful and shocked at the information our group has shared. I decided to look into EDS as a possible additional diagnosis due to the feedback all of you offered. The link between chiari malformations and EDS is seeming to align for me all too well.

I met with my neurologist and here is what I learned to now share with all of you:

a) hypermobility - I have always been able to move my fingers and toes in weird ways and have been double jointed. My doctor asked me about this, and I showed her my top joints on my fingers bending and she replied, "Yup, you have hyper mobility."

b) Skin Lesions - I have had since high school what I thought were stretchmarks on my thighs and arms, I had no idea why, but again, she looked up pictures of the types of skin lesions people carry. Guess what? I have the exact same skin lesions as appeared in the pictures.

c) Myofacial Pain - Yup! I get it so bad my ears actually hurt from time to time.

d) Headaches - Yuppers!

e) Insomnia - I count a lot of sheep, but the middle of the night waking up with anxiety has always confused me. It seems the anxiety has no purpose and I am not an anxious guy typically.

f) Cervical Issues - I had a ruptured disk when I was 20 years old, and now I have four in my lower back with arthritis. I'll be honest with you. This typically doesn't trouble me because my headaches are so bad. The flare-ups that come from time to time make this a challenge at times, but my hip pain and lower back stuff are actually connected to the chiari. I never even made the connection before, so this is a huge change.

g) Rapid Heart Rate - rarely but I do get extra beats in my ventricals roughly ten times per week

It would seem that I am probably going to receive the EDS diagnosis. I am getting new MRI's of the whole spine and brain due to my fainting episodes or seizures. My doctor now thinks they are seizures because of the wavy vision issues that occur for hours after an episode.

I need to say "Thank you!" to the folks on here who encouraged me to check this out. When I watched a video presentation offered at a recent Chiari and Syringomelia Conference, the doctor literally described me. I started to cry, because I felt seen in a new way. Then, I felt sad and concerned about this new understanding of my health. I tell you all that to ask a question I hope can benefit anyone else with this co-morbidity diagnosis.

Link to Video: http://csfinfo.org/education/patient-information/chiari-syringomyelia-and-related-disorders/related-disorder-ehlers-danlos-syndrome/

Question for the Group:

Please share if you have similar symptoms you think may connect to EDS, and please also let me know what the value is in knowing this.

In other words, how does this new diagnosis serve my overall well being? Any ideas or next steps?????

I am more grateful than ever to have this support network. My eyes are being opened and I am finally getting why my life has been so challenging for the past fifteen years.

Peace, Brian

2

Here is a better link to the video led by Dr. Clair Francomano. She is AMAZING!!!!! I would love to attend this conference at some point.

Link: https://vimeo.com/79846945

Peace, Brian

3

It’s nice to finally get answers! !!! Wishing you the best

4

Thanks Rebecca. So true.

5

Hi Brian,

I'm sure this revelation is a relief to have questions finally answered, yet just one more thing... You have handled everything as well as anyone could ever hope to do. Attitude is everything!

I travel around to different groups here on BF, and we have an EDS group, it's still in it's infancy, small but good, and you may want to eventually join and talk to others there with hypermobility.

http://www.ehlersdanlossyndromesupport.org/

I wish you well,

SK

6

I am a little freaked out. Other than my stomach issues, you basically described me. I am going to look up EDS and see what I find. Thanks for posting this.
Jen

7

It certainly does sound like you have some answers Brian Especially the skin stuff.

For the rest of us, keep in mind that EDS is a pretty straight forward diagnoses that should be confirmed by a geneticist There is one form that is not confirmed by blood work but is confirmed by the New Brighton Score for testing hyper-mobility and Old Brighton Score for skin. Most forms are autosomal dominant so there will be significant family history in first degree relatives The diagnostic criteria of all forms and be found at: http://ednf.org/nosology

EDS is a hot disease right now largely because of some genome testing that has been shut down because of its lack of evidence and consistencey. There is constantly a new fad disease to explain chronic pain Lots of people have symptoms of these diseases but not a lot have a fully confirmed disease. So PLEASE until you have a confirmed diagnoses than can be verified be very careful.

EDS does have a connection to Chiari WITH Syringomyelia co-occuring about 13% of the time. You certainly need to educate your self and understand what you are up against, but there is so much crossover in diseases with a genetic or auto-immune link, they are hard to seperate. You can cause yourself a lot of unnecessary stress if you make a check list every time you come across a new "thing."

Good Luck Brian as you nail down more answers..............

8

Thanks for that very thoughtful warning. I will press the PAUSE button and see what the test results reveal.
However, I must say that the chiari has always felt like part of a bigger issue.
So, the meeting with my neuro really validated the holistic issues one may face on this path.

I believe expectations are what create misery and frustration on this journey, because our lives simply are.

Thanks for that very helpful perspective.

Blessings, Bri