This August will be 14 years since I was diagnosed with Chiari…and for the first time in those 14 years I am broken.

My spirit is broken and I don't know how to put it back together.

I am thankful that for most of my life I would describe my health as good. And all things considered, it is still good. Good in the fact that I am not dying and I am not visibly sick. Only those close to me know how I feel most days and I am able to hide it from my children, for the most part (they are too young to fully understand just yet). And it's actually great, in the fact that many others with Chiari are worse than I am (not great for them, but I hope you understand what I mean by this choice of wording).

And while I can grasp that there is no cure and the 2 operations that I have had to date have been made to stop any progression. And that any nerve damage, etc. that occurred prior to surgery is permanent. But what I can't grasp is how some days are worse than before.

I honestly no longer know what to expect. And am beginning to doubt that it will ever be any better.

I am so very sorry. I don't have any advice other than to say I feel similar. I am 5 months post-op and it truly hurts knowing I'll never be the same. On those "worse" days it is hard to be all that I want to be and that others want me to be as well. It certainly does not change the day-to-day difficulty of this disease, but you are not alone.

I feel your pain frustration. Although its only been 1 week and 1 day since my surgery; I been having severe migraine and my entire head hurts it feels like it sore. The only relief is ice packs or rubbing my head with my hands. Before surgery I did not have migraines just slight headaches everyday. I’m just holding on and praying for healing. Try to hang in there and don’t give.

Thanks to all that responded. And I shoudl add one clarification, while it has been nearly 14 years since the initial diagnosis, I am only currently 6 months post op. I had a decompression surgery in 1999, but had cauterization of cerebellar tonsils surgery done last October.

Thanks again!

The recovery of the second surgery was easier in some respect and harder in others. But I would say that that the 1st surgery was probably a little easier simply because I was much younger when I had that surgery. Even so, the recovery wasn't bad this time around. Thanks!

Emmaline said:

Ohhhhh. How did you do with your second surgery? Was it like the first one recovery wise? Or was it easier?

I hope you're still healing and changing like I still am, it take some more time than others.