I spoke too soon!!!

[dani43946]

Hi everyone. I wrote a few weeks back about how great I was doing, but I am afraid that I may have spoke too soon.
My original decompression surgery was May 19 and then a second surgery on July 8 for a repair of a csf leak. I went back to work (8:30-3:30) three days a week on August 30. It isnt a strenuous job, but I am sooooo tired when I come home.
My NS says that I am "cured", but I know that there is no cure for chiari. But how long does it take to start feeling well again? Or will I? I am worried because the only symptom that has gone away is the horrible pressure headache in the back of my head. I am so thankful for that, but I guess I just expected to feel alot more different after this surgery :(
Can anyone give me somewhat of a timeline as to how I may possibly feel in the future? Your experiences?
Thank you all so much,
Dani

[selmaS]

Hi Dani...so sorry u  r again having issues...chiari can be rough....and it just may be too early in ur recovery for working like u r.....

U had a second surgery...and to me that would mean a little more time to rest up.
It can take up to a yr to completely heal..some of us may take less time some more...Wolf is right in that it is diff for us to really give u a timeline.
But, I will say that I had a period of time I felt I was back sliding...and once I got to a yr post op I could see more improvement.....

Be patient...rest...listen to ur body...

Do u have a NL to keep an eye on u post op?...when do u see ur NS again?

"selma"

[ChiariWolf]

Hello Dani, Sorry to hear you are struggling so. Frankly I'm not sure anyone other than God himself is qualified to answer your question. We are all different and when our CNS is messed with we are kind of like a computer network with crossed wires. Anything can happen and seemingly anything can either make us feel better or worse without notice.

For me personally it has been just over a year. I feel so much better than before it is almost indescribable however my body is not the same. At times it feels as though I"ve lost 30 years to this thing... really. But you know what Dani?

A bad day with Chiari, A horrible day with Chiari and all that comes with it is still better than your best day laying in a casket! Not trying to be morbid here but it's the truth. So for me I choose to look at the positives every day. Every single day no matter how bad or good has some positives in it.

Seemingly just a few short days ago an elderly man called me wanting help. Personally.... my body my mind didn't feel like going anywhere that day. I didn't even want to look at a computer screen let alone go anywhere. But I listened to his plea and went. Well yesterday the same man called me wanting help again. This time we sat and talked. He broke down into tears as he told me how he worries about me. He said that without the time we spent together that day he wouldn't be here today. He had his pills all lined up and had decided that if someone didn't come that day he was going to end it all. Because I came and listened to him he decided to keep trying. Now he says watching me make it despite these health problems  keeps him going. So you see.... somedays we may get down and not know how to make things work another moment. But there is always someone worse off than we are.... except for when we are in that casket.

So Dani, we all know it can be difficult. But hang in there... and consider what your body is telling you. If it is saying 'today I can take no more' well then grab some chocolate and take it easy. If it says 'come on lets go' well then go, but go slowly otherwise the next day will be a chocolate day again. Not that chocolate is bad mind you!

But please, don't try to put yourself into a mold. We will all heal at different rates accourding to our individual circumstances.

Wolf