Happy Anniversary…Chiari…

Some of you already know…that I have a condition called…Chiari I Malformation…for those who don’t…it’s a congenital condition…where simply stated…my brain didn’t fit into my skull…and…my cerebellar tonsils…were pushed down into my neck…

And…no…it didn’t mean that I had an unusually…large…brain…although I attempted that argument…the neurosurgeon…assured me…it just wasn’t so…

There are a lot of symptoms with Chiari…pretty much caused by the crowding and resultant nerve damage…and…most of them…could be from a lot of things…headaches…dizziness…numbness…balance problems…ringing in the ears…to name only a few…so…while it is relatively easy to identify…can usually be seen on an MRI…it isn’t easily diagnosed…and…most doctors aren’t looking for it…

Personally…I had mild symptoms for a period of about twenty years…before it was diagnosed…

So…why am I telling you all of this today…well…it’s the third anniversary of my surgery…and…anniversaries always make me a little nostalgic…the other reason…is because…there isn’t a lot of information out there…for people who are diagnosed with Chiari…I know…I Googled…a lot…both before and after the surgery…I wanted to know…needed to know…what to expect…

But…the thing is…there’s no…normal…recovery or progression…everyone is different…depending on how much nerve damage has been done…and…if there are other conditions present…

According to my neurosurgeon…I have made an excellent recovery…he’s the same guy who said my brain wasn’t large…but…in this case…I believe him…

My recovery wasn’t quick…and…it isn’t complete…it took me at least eighteen months to feel…almost like a normal human being…of course there are those who say…I’ve never been normal…my main symptoms post op were what I call brain fog…numbness…headaches…and…neck issues…

Honestly…now that I look at the list…I still have them…they just get better as time passes…and…I learn to deal with them…

Okay…Bertha…says I’m getting long winded…so…I’ll conclude with…

If you are having any symptoms of Chiari…please…see your doctor…go out on a limb…mention it if he doesn’t…

If you are diagnosed with Chiari…find a neurosurgeon with Chiari experience…

If you have had surgery for Chiari…treat yourself kindly…everyone recovers at a different rate…in a different way…how sick you were before surgery will affect your recovery…

If you need someone to talk to…drop me a line…

Jane

Click here… http://www.mayoclinic.org/diseases-conditions/chiari-malformation/basics/definition/con-20031115  for information on Chiari…

Two Years and Counting…

I’m celebrating today…it’s my friend’s birthday…but…that’s not why I’m celebrating…and…at our age…I’m not sure she is either…but regardless of birthday wishes…I’m celebrating my two year anniversary…

That’s right…two years ago today…I had posterior fossa decompression…due to Chiari I Malformation

I remember getting ready for the surgery…it was such a surreal feeling…I think the main thing was…not knowing what the outcome would be…not really even knowing what to expect…there isn’t a lot of medical information out there about what to expect following the surgery…

I think that’s because…they simply don’t know and can’t really predict…how anyone is going to do…it’s pretty individualized…and depends on the extent of nerve damage prior to surgery…and other co-existing conditions…so…they just don’t say…

So…that’s why I write about my Chiari experience from time to time…just in case there’s someone out there…who needs to read about it…

Honestly…from my instant gratification standpoint…it seems to have been a slow recovery for me…although I went back to work at three months…I honestly didn’t feel like it…and I struggled the two months I worked until summer vacation…

The next school year was better…but…I still didn’t feel that great…and by early summer…just before eighteen months out from surgery…I thought this was just gonna be the rest of my life…foggy brain…numb arm and face…frustrations and aggravations…

Then…suddenly…at eighteen months…things seemed to rapidly start getting better…the numbness improved…I had a great MRI…showing continued improvement…and…the fogginess was gone…

On the fogginess…it was the same time that I started eliminating processed carbs…yes…and sugar…from my diet…so…I can’t be sure…what helped…if it was just time…or…no carbs…but…the good thing is…feeling better is definitely a motivator to keep me following my new dietary lifestyle

Fast forward another six months…and it’s today…and…I continue to improve…my stamina is better…until a couple of months ago…exercise made me feel worse instead of better…I’m actually building up my sick days again…haven’t had to take one so far this year…

I did read somewhere that full recovery from the surgery could take up to five years…at the time I thought that was crazy…how could it possibly take that long…but…now…I realize…it is a slow process…but…like the tortoise…I’m winning the race

Jane