Retroflexed odontoid, EDS, Hashimoto thyroiditis

[Dicon]

Does anyone know if there is a connection between EDS and Hashimoto thyroiditis and if having a retroflexed odontoid typically means you have EDS?  I've read so many things that seem to have all of these things in common.  Does a retroflexed odontoid typically indicate crowding of the posterior fossa even if MRI doesn't show "textbook" chiari?

[ceo83]

@selma, as i was reading i thought simple enough to follow ... NOT!!! cant figure it.out, how.to.make the illustration. but  did understand.

[selmaS]

  Yes u can with only a score of 2 !! EDS is not all hypermobility,....so find a Dr that really knows about this condition and get tested..some have hypermobility of larger joints of just of the smaller joints and then others just a few of either one...or none at all and have other EDS symptoms. We r tested for hyper mobility as it is the most common one, but we do not all have to have this type.

I did not have the fusion, it was suggested m but I have yet to have it, a friend of mine did....I was scheduled for the release and the Drs changed it to the decompression as they felt I would get more benefits from it, but may need it later neway...which is where I feel I am at now.

TCI is where I went and they did all that testing on me, u will be told to go see a Dr  for EDS if they feel u have it....

[Dicon]

I only score a 2 on the Beighton Scale.  My PT is the one that evaluated me to have a hypermobile neck joint.  I'm not sure if you can still have EDS if it only affects certain joints.  I do have a ton of joint pain throughout my body.  My neck is definitely too weak to hold up my head. And it definitely feels like my skull shifts as the day goes on and I move around. I can actually hear it crunching and grinding.
What kind of fusion did you have?  Did it help your sx?  Did you have your TC release also?  Most with EDS can have TCS also right?  I feel like I have it all and am going downhill fast.  Guess I'll have to hope that TCI will test me for all of it!
Thanks for your info and explanations...they are so helpful

[selmaS]

  Most with a retroflexed odontoid have EDS...I have both...and it was my Dr that explained it to me that way to show me the room that I did not have and y the length of my herniation was not a reason for surgery and y this had to be done b4 my TC release.

Yes, most times with a retroflexed odontoid they will do a fusion, mine was not fully turned, but closed off enuff space along with my herniation there just was not room, as it was overcrowded in the space...

Have u done the Beighton Scale to see if what ur score is?

[Dicon]

Did you have surgical intervention for it?

[Dicon]

Thanks so much......what a great way to explain it and how clear it is.  Why the heck don't Drs get it then????  To say it's no big deal when clearly it is!!!  I've had Hashimotos thyroiditis since I was 12 and found out I had thyroid cancer in 2010. I had a total thyroidectomy. Interestingly, after that surgery I started with severe neck pain (although had neck complaints for years prior), but I assumed the neck pain/stiffness was from the positioning of my surgery so I sought out a chiropractor.....HUGE MISTAKE.  The mess I am now in is a result of that.  Have spent the last 18 mos desperately trying to get help.  I am absolutely convinced that I have chari and have been told I definitely have a retroflexed odontoid.  Feeling like I could possibly have EDS and TCS too.  The pieces seem to be slowly fitting together to all make sense for years of crazy sx!  I know there is a vascular form of EDS....would that cause DVTs?  All I've read is spontaneous rupture and aneurysm but not DVT.  When you have a retroflexed odontoid doesn't it typically require a craniocervical fusion?  Thanks for your help!

[selmaS]

  Hi as Molly said yes to the retroflexed  odontoid and EDS...and Hashimoto's is a auto immune thyroid condition and those with Chiari r prone to autoimmune and connective tissue disorders like EDS.

To understand how a retroflexed odontoid can affect CSF flow take ur left hand and the pointer finger and thumb and form a circle with the pointer into the base of the thumb..take the pointer of ur right finger and from the bottom insert into the circle and point toward u, only go as far as the first knuckle of the pointer on the right hand....now slowly turn that finger that it points way from u and watch the space around ur finger.

  The imagine u have a herniation in that space.....even if it is a small one it is going to create  an issue.

Hope this helps.

[soccero]

check out dr henderson thats the first dr ive been to that told me there wwas a way to help this. ive been to lots of drs and everyone mentioned it but said it was no big deal
molly

[Dicon]

Thanks.....that's interesting.  I've had 2 NS tell me that I have a retroflexed odontoid and I can clearly see it on my films, but they've told me it's no big deal.  From all that I've read it's a big deal!  It's gotta cause crowding of the posterior fossa.  Hopefully I'll get to a NS that has a clue about this.

[soccero]

i dnt no what hashimoto thyroidotos is but a retroflexed ondontoid and eds are most deff related. cause ur neck cant hold up ur  head cause u r too flexible so therefore making a retroflexed ondontoid.
molly