Sara Syndrome

[Wyssa]

Hi guys! I just got my diagnosis from Dr. Rekate from the Chiari Institute, and boy am I happy! He basically listed all of my symptoms even crazy ones that don't make any sense and gave it a name. It's called Sara Syndrome, its Ehlers Danlos, Fibromyalgia, Cranio-cervical instability, Chiari, and Dysautonomia or POTS all wrapped up in a neat little package. He says he's been studying it for 20 years and is doing a study on it and several of his patients have it especially if they have failed Chiari decompression. So basically what he's going to do for me is pop my head off my spine, move it, and fuse my neck so there's more stability. I'm not going to die, and shouldn't even go permanently paralyzed, and should be a normal person again with some minor though livable symptoms! I am beyond the moon happy! The 7 year search for answers is over! Hurray! Just had to share the good news with everyone especially those who have helped me out so much with finding answers. You guys are the best!

I'm thinking about starting an Awareness campaign for Sara's Syndrome so more doctors know about it so it can be diagnosed correctly. What do you guys think?

[Wyssa]

Thanks Selma! Its all very interesting! I decided to write a blog about my experiences with it so if anyone has any questions they can go to it and read it. I'll document how it helps and such as well if anyone wants to find out.
I'm not sure about my surgery date yet, but when I know I'll make sure to add it! :)

http://karisasarasyndrome.blogspot.com/

[selmaS]

  Hi Congratulations !!  It is soooooooo very important that we are tested for all of these related conditions as so many of us have a couple of them all at once....I never heard of Sara Syndrome.....but I am sure there are enuff of us out there with that compilation of conditions.....the only one I do not have is the POTS>....

Do keep us posted on when you have surgery, post it on the list your surgery date thread so we can post a prayer thread and then update us when you can....I am very interested to hear how this helps.

  Wishing you all the best <3