Chiari Online Support Group

Meeting everyone

Are there many located in NC / SC that would like to meet? I would love to hear positive success stories that would inspire me to have more hope and to stay positive through all of this. I saw where one is scheduled next weekend but unfortunately will not be able to attend.

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I’m am also definitely interested. I know the group meeting next week tries to meet once a month. But as far as I’m
concerned, the more people we can network with the better!

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Where are you located I am close to Greenville and would love to meet someone and share my story I have beenDX’since92 I have had 9 surgery’s I have Lyme’s disease, Lupus, a pacemaker, EDS. I am 54years young and I really would enjoy having a chiari support friend and help someone though any questions they may have I also have theathered cord which I will be having surgery very soon for

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I am near Newberry. I am scheduled for surgery April 21st.

Im in NC 🙋🏼And would love to meet more chiarians near me! Social media helps and i’ve met some great people from all over via hashtag #chiarimalformation

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What area in NC? Have you had the surgery?

I live near the Greensboro area and Yes,I was decompressed January 6th this year.

How have you been since Surgery?

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Directly after surgery I was wayy better than I thought I would be,very alert,drinking water and was out of icu within a couple of hours.The pain was kept to a minimum and you wouldve never known I just had brain surgery.I was in the hospital for 3 days.Fast forward a couple of weeks at home,I slept alot (staying elevated is key) I actually started feeling so well before a month was up that I started cleaning my house (not recommend,I felt it later) My advice is rest,rest,rest after surgery even if you feel amazing…The dizziness is still occasionally here and numbness in my left arm and leg but thats getting better (I was told a year) Migraines are basically gone and I can bend over without feeling like my brain is falling out (sorry if that was too graphic but you know its the truth) I was able to drive 5 weeks after…take it slow though cabin fever kicks in during the time at home and its kind of odd getting back into the world.Im so glad that I went through with this surgery…it saved my life.I was very worried and put it off for a couple of months as I suffer from ptsd as well until my dr told me there was no other choice and eventually it would take my life…It was so simple compared to the normal pain we’re used to.

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Where are you having your surgery? I would love to talk to you we are so close.

Where was your surgery? How are you doing now?

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Heyy! Sorry for the delay.My surgery was in Greensboro.They were absolutely THE BEST! Im doing well…still some numbness on left side (prior nerve damage),some random popping in my head and the migraines have basically gone…except for really windy days (barometric pressure) My eye sight is 50% better after losing majority of it when symptoms first showed.

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