I have a new follower! She has Chiari as well and she has had surgery but it wasn't decompression! Which gives me hope for days like today when I feel awful but had to pull myself out of bed, throw back some meds and go to work!
Here is her blog! ENJOY!!
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This is blog focuses strictly on living with an uncommon and silent disease. I am going to use this to catalog symptoms and my everyday emotions of dealing with Arnold Chiari Malformation Type 1. http://www.medicalzebras.com/chiari1malformation.htm
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About Me
- Adrianne
- I am a mom of two beautiful boys, Logan Lee 12/11/02 and Cole Michael 05/05/05. I married Travis on August 11, 2001. We're one big, most of the time, happy family!
7 comments:
Hi! I'm Lori and the poster of the blog you reference. Actually, I did have decompression. However it was not the zipperhead standard decompression, it was endoscopic. Same principle, except you cannot see any scars (2" scar under hair line), never had staples, my muscles were not cut, my dura is scored not split open or replaced, and I was out of the hospital in 24 hours. I had 2"x3" of skull removed and a lamenectomy on my first vertebrae. It is a decompression, just advanced and modern, not caveman style :) Thank you for the mention. I have really enjoyed your blog!
Much love from one Chiarian to another,
Lori
Hi,
I just found your blog. Thank you for sharing your Chiari struggle. I have a few questions for you. First of all are you still on the Topamax? Secondly, how many excedrine do you take a day. I am at 4-6 right now. It's only 8:52 in the morning and I just popped #3 and 4 I have many more, but the sun is finally up and the house is finally warm enough for me to get some work done. So I will save those for later.
Thanks,
Kate
You've got another ACM follower - I'm going for my PFD sometime in April. Just waiting for a specific date. I tried Tramacet for my headaches, didn't work - just made me feel very unwell. Now I've got a script for Torodol, but I haven't had to use it since it was filled 3 weeks ago - hurray!!!
Hi, im Kate, I just turned 15 years old. and was diagnosed with arnold chiari type 1 about 5 years ago. I have not underwent any sergerys but i do go for MRI's and visits for pain management every 6 months.
I just found this blog, and thought it was interesting that you can share your chiari struggles.
and if anyone knows any other blogs or websites for anrold chiari type 1's that would be a great help to me. thankyou :)
hi im sam im 27 and just been diagnosed with acm1.the doctors are not sure how long ive had it or if my brain is to big or if the 'spinal hole' as my gp called it is to small ive just got to try and ajust my meds to suit.i cant tolorate the dose of topamax im suposed be taking and now they have upped my amitriptyline to help me sleep and help the badheads and virtigo.im in constanat pain with my head and neck.its slowly wearing me down now as i darent go out alone for fear of blacking out.any tips on how to handle this would be revived very greatfuly thankyou
from sammi xxx
p.s. im new to this blogspotting aswell xx
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