Is there a connection between EDS and Chiari?

[Kennedyhanau]

Hello, I'm brand new to the Chiari world. I've been having what were diagnosed as migraines for as long as I can remember. Sometimes I just feel like crawling in a hole and dying because the pain is so bad. I'm in pain management because I have degenerative disc disease, ruptured discs, arthritis in my spine and severe sciatic nerve pain. I had surgery at L5/S1 in January 2013 after suffering since July 2011 and it helped nothing.  I have been having severe neck pain along with upper back pain and was finally able to get my PM doctor to do an new MRI of my neck and thoracic spine.  They called and told me that I have four ruptured discs at T5,T6,T7 and T9 and that I have a 6mm herniation of my cerebellar tonsils. They said that my PM doctor had no experience with this and referred me to a NS.  After weeks of back and forth getting paperwork from my previous surgeon I finally got an appointment for May 12th.  Alright, now that you have my background info here's my question.  How common is Ellhers  Danlos Syndrome along with CM? I ask because My niece has EDS and my brother is a carrier of the gene.  I do have a lot of joint pain and I am "double jointed". I also bruise very easily which I know is a symptoms as well. I've chalked it up to my being clumsy, thinking I must have bumped myself and just didn't remember. Will a NS check me for EDS if there's a family history? Anyone have experience with this? Thank you in advance and I am very sorry for the long post.

[selmaS]

  Off the top of my head I am not sure what Drs may be there for Chiari...but it is best to visit a few that are true Chiari specialists, as even those that do list Chiari, may not be the best choice for u....

Keep in mind it is very important that u know, there is no cure for Chiari, and there is no real fix.....educating urself so u will know when u have the right Dr will be key to u.

U may scratch ur head a lot more b4 this journey is over....just know u r not alone.

[Kennedyhanau]

Thank you, Selma. I'm being referred to a NS that works closely with my pain management doctor. Honestly, I'm not very hopeful that this guy will know what he's doing. His website mentions all sorts of conditions that he deals with, but I didn't see Chiari at all. They also state that thoracic discs don't rupture...I was scratching my head over that one since I do in fact have four ruptured discs there...lol. I've been looking for a different doctor already. I'm in North Alabama and I would really like to travel to Vanderbilt hospital in Tennessee. Perhaps I should call my PM doctor and just ask him to send me there instead.

[selmaS]

  Hi and welcome to the Chiari forum.

Yes !! EDS and Chiari are related and intertwined....I have both...EDS could explain all ur disk issues....

Not ALL NS's are the best to see for Chiari u will want a true Chiari specialist, one that will look to see if u have EDS and other related conditions as it will affect how u feel and heal should u require surgery.

Getting a DX of EDS for me was done at my NS's office....but, not all NS's know how they are related or how it may affect us....see my Poll on Surgery set backs....in reading those with post op issues u will notice how many were DX'd with EDS after surgery....I have them both, had surgery and no set backs....so I am trying to get info to show what I am saying, U need to rule out ALL related conditions as it is very important to ur recovery.

We do have a list of Drs that is here for ur use to research the NS u go to, and I would suggest u see a few so u can compare them.

The list is not a referral nor an endorsement...it is a list compiled by the members of Drs they have been to, treated by and liked....it does not mean the Drs may be right for u....so educate urself on Chiari and related conditions so u will better be able to recognize the right Dr for u,

http://www.medhelp.org/health_pages/list?cid=186