In Living Chiari…

September is Chiari Awareness Month…yesterday…I asked my friend to remind me to write about it today…he didn’t…it did…by waking me up with…a headache…

Two-and-a-half years after surgery…I am doing remarkably well…I am able to work every day…exercise…and…live what I consider to be a normal life…my MRIs are good…my neurosurgeon says I’m doing great…

Does this mean I’m symptom free…

No…

And…I never will be…that’s just the way it is…funny thing is…sometimes…I can’t tell what is…Chiari…and…what is just…life

Take this headache for example…most people with Chiari have headaches…that was probably my major symptom…along with numbness…but…a lot of other people have headaches…that do not have Chiari…so…how do I know…

Bertha…says…I don’t…I can’t…because…I can never be a person…who doesn’t have…Chiari…it’s as simple as that…

She says…it’s the perpetual…chicken or the egg question…the one that never gets answered…

And…she says…it really doesn’t matter…at this point…if my headache is Chiari related or not…it’s just a headache…and…the only question is…what do I do about it

Of course…she goes on…to relate that to my life in general…reminding me…it doesn’t matter how things got to be…the way they are…in any situation…the only question is…what do I do about it

Hmmm…

Jane

PS…please take the time to click on the Chiari link…for more information regarding this underdiagnosed condition…

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