Chiari Online Support Group

Need some insight


#1

Hello Everyone,
I’ve been gone forever from here. Had some crazy things going on in real life. But now I’m back and recently I’ve been symptoms I would contribute with Chiari. But I had decompression surgery back in 2014, my question is to anyone that’s gone through it as well. Have you ever had a relapse and begun having symptoms again? I just didn’t know if this was common or not. Any insight would be appreciated, thank you.


#2

Good day

It is no good when health declines. Hopefully, you can find some information here in previous posts. It is hard to make a comment on your situation as you do not mention what your current symptoms are. I often think of Chiari symptoms as being in two camps. One is symptoms more directly related to compression on the CONTENTS of the foramen magnum and the other camp is symptoms related to “brain stress” - sorry, I am not a doctor. Of course there are symptoms in the pain category too which can have different factors associated.


#3

I was dx in 2014. Never saw much improvement. I’m in horrible pain. Without knowing symptoms not sure what to say. Sorry, hope u feel better.


#4

Hi I had my 1st surgery in 2014, it was the extra rural, things were great until mid 2016 when I started w headaches again so my neurologist upped my topomax I was also having dizziness and vision changes and horrible head rushes any time I coughed or bared down, I thought maybe it was my inner ear or my eyes so I went tru all the tests and found nothing, so finally mentioned it to my neurologist and he sent me right back to my neurosurgeon who did a CIN MRI before I saw him and when he came in the room the first words out of his mouth were “why did you wait so long to come see me”! I honestly didn’t think it was my Chiari again, he said basically I had no flow so I had surgery within 2 wks, let me tell you this one was tough this time I had the intra Dural and now havea graft, when the doc saw me post op he said when he cut into my dura he was amazed how tight it was! My recover was very rough, 3 days in ICU, 4 days on the floor walking and speech issues, but yesterday made exactly 1 year since the surgery and I’m doing fantastic! Very minimal breakthrough headaches so I’m absolutely thrilled I did this again! I had my surgery @ Dartmouth Hitchcock in Lebanon NH! Great facility and staff was awesome!!!