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Chiari Malformation Community
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620923 tn?1452915648

September is almost over......

What have you done for Chiari awareness during September this year?

I tried to wear purple more often and I tried to post something on social media everyday.
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620923 tn?1452915648
COMMUNITY LEADER
No one? Come one someone must have done something for Chiari awareness month....
2 Comments
Well I had this all typed up and it disappeared so sorry if it pops up again! Also sorry I’m late responding. I have a new neurologist who is having me do lots of testing. He thinks I may have seizures on top of everything else. So I’ve been dealing with that. Prob need to make a new post regarding it

Anyway, last year I participated in the chiari walk but Covid nixed that this year. So I’ve just been wearing my chiari shirts basically.

Hope all is well with you
Hey Kerri.... good to hear from you. Don't you just love technology.....ugh...I have had that happen a few times to me too....you get it all the way you want to say , and blam it's all gone..

Goodness, what type of seizures?
I can not wait for covid to be a part of the far distant past....so over it all! Some were still doing walks but virtual? Not sure how they did that, I guess people walked in their own areas instead of grouping together....I donated...there is never a walk in my area  and I do not have the time it takes to do one right....maybe down the road sometime, but for now I support a friend that does the walks in another state.

I post on FB and I also have a shirt I  got last year for my friend's walk...I wore it this year as I donated toward something else she did as a fund raiser, and it wasn't a shirt...lol...but I have purple bracelets and clothing...so much that everyone in my family thinks my favorite color is purple, I said you all missed the point....sigh. All we can do  is try.
Avatar universal
Hi Selma. Well they were thinking epilepsy but the EEG didn’t show that. However, I’ve had this ongoing leak that no one could seem to pinpoint and finally got discovered with the help of my amazing neurologist. It’s at the upper thoracic level and after looking at my eyes he noticed I have high icp which probably caused the leak.

Getting scheduled for a targeted blood patch soon with the hope that it will seal it. Then a nice long round of diamox again.

Ahh chiari. The gift that keeps on giving....
2 Comments
I am so sorry it was a  leak, but so glad they found it....if they had only noticed ICP and used a shunt with out finding the leak it could have gotten worse for you.

Hopefully the leak caused the high ICP and not the other way round.

Please keep me posted.
I’m scheduled for this targeted blood patch on the 23rd. He seems to think the high icp caused the leak and I’m very much praying I won’t need a shunt.

And praying one fixes it all. This will be my 3rd blood patch since November of last year
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