He has helped me in numerous ways. Thankfully, because of Him, I ended up in the hands of a surgeon who was able to help me. I underwent a massive revision & it helped significantly. I'm fused, my spine is straight & my spine is so much better than what I ever thought possible. I never thought I'd get out of a vicious cycle of spine surgery.

Thanks so much!

We need a miracle not a prayer

Thank you so much! Fortunately it's much better now. I underwent a massive surgery to revise my spine because the rods were literally bending forward. Now, my spine is straight & neurological symptoms improved. Thank you for your prayers, encouragement & support!

Thanks for the encouragement!

You stay strong too 💪

Thank you for the prayers

I understood you aren't meant to be that way. God Bless and best wishes.

I'm so sorry you're struggling with severe pain. I sympathize with you. I've had been through a lot of spinal surgery & there were times I thought I'd never improve. I hope something becomes available that will help decrease your pain.

Thanks for the information! I've heard a lot of good about Dr. Hauser. Unfortunately, he wouldn't have been able with this particular problem. In this video I had already had my spine fused. There was a complication and the rods in my spine literally bent forward. In October 2018 I had a major spinal revision which has helped drastically :)

Thanks, I've been I touch with her. I know which surgeon she uses. I'm hoping 5th time is the charm to revise her shunt 🤞

@@MeganKing19 Good deal! I'll be going to Dr. R for my chiari decompression and fusion. I always have been fond of North Carolina.

I hope your surgery goes well! When are you having it done?

Texas, unfortunately, doesn't have any Ehlers-danlos knowledgeable surgeons. We have to go out of state.

Thank you for the suggestion. I hope you're doing better since your surgery.

You’re welcome Megan! Yes doing well with my fused areas.. unfortunately I was in an car accident coming home from my one year post op appointment and started having neck pain and now my neck is going forward too so have a September appointment with Dr Geck to see if I need neck surgery..

Oh gosh, I'm so sorry to hear that. Best of luck at your appointment. Hard to believe it's going to be September very soon.

Thanks Megan❤️

Hey! No, not in my situation. There were factors unrelated to EDS that led to the rods starting to bend.

Thanks for the suggestion. Unfortunately I've been to Mayo in MN & they weren't able to help.

How about university of MN.. ** Dr. PINTO. I'm praying for you 🙏🏼❤️

I can relate to almost ever single spinal issue you listed there, with the exception of the certain arthritis?...plus more. I too have EDS like Megan, and Craniocervical instability and atlantoaxial instability. I'm ready and waiting (on my family) to have my fusion surgery. Now this is just my experience...I can't speak for anybody else, but! Currently I don't worry/think that much about when I get old...don't get me wrong, I think about it! I plan for it. I am prepared for when I'm fused...as prepared as I can be without actually having the experience yet. However I'm more concerned right now about the fact that I'm walking around NOT fused. My thoughts are more focused on my current status. I feel like I don't have time to *worry* about when I'm old, I'm trying to just stay alive right now! (And for the last 10 years almost.) Does that make sense?? I don't know, I'm sorry. Anyway. I feel like that can tend to sort of be the mindset of an EDSer...focused on the current problems, we'll get to the other stuff when we get there!