Just wanted to do a quick update I have had severe headaches and migraines for...

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  • This is SO interesting! I'm glad you've found a solution! I'm also hyper mobile in certain joints, and when I get C1-2 adjusted by a chiro, it never holds. I'm going to look into this!

  • Oh my gosh , yes!!!! That was so me!

  • Do you inner elbows swing around when you put your hand on a table?

  • C1c2 are held by ligaments, not muscles. So if they continue to not stay then there is definitely Damage to your joint holding them.

    My official diagnosis is Atlanto axial instability, another term is cranial cervical instability.

    Also, you don't have to be crazy hypermobile to have this affect you, just depends on where it is in your body. Good luck!

  • Julie, look into the Beighton scale. That's the scale for hypermobility.

  • I have 20 years C1-c2 instability, 17 chiropractors, 3xweekly chiro appts for yrs, benign hypermobility..its definitely me. Pretty sure I have EDS type 3. Heading towards thinking about a fusion now my kidneys aren't so good anymore - from all the pain drugs over the years. Best of luck to you Melissa, you've done great with the fusion! Best of luck to you too Julie if you go ahead and get it done xxx

  • Xxxxxxx Yzzzzzz please consider it. It's not worth so much pain. I was absolutely miserable before, no one should have to live like that.

    If you do consider it, let me know. There are only a handful of Drs I trust to deal with this condition.

  • I would have to travel to the USA (I live in New Zealand). I discussed it with my husband and he said we'd look at doing it in the future, give it another year (gosh another year!, I'm almost done already...but at least its a possibility for me that I have seen gives results and nothing else really does)

  • But I'll keep you up to date as I may need your help Melissa esp with locating the doctors and coming from another country as well

  • Xxxxxxx Yzzzzzz there are many many people who travel over seas to see the surgeon I saw. He has a year wait. pm me!

    ( he also has some fascinating you tube presentations etc)

  • I have eds 3 feel for u and have had the migraines for 2 years constantly

  • Thank you so much for sharing your experience. I'm hyper mobile also and am waiting for an appointment to come through from an orthopedic specialist, shall do some research! Xx