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…

Hello Chiari…It’s Me…Jane…

Yesterday…wasn’t my best day…I woke up still feeling kind of…fuzzy headedwhich had nothing to do with my coiffure…although…now that I think about it…that would have applied as well…

It had all to do with the fact…that a passing weather front had decided to…stop and stay for a few hours…which…sometimes…activates…my Chiari symptoms…

Thankfully…those pesky fronts…rarely cause the headaches that they did before my decompression surgery two and a half years ago…it’s more of a feeling…that…anything…and…everything…is just too much trouble…

The bed went unmade…the blog unwritten…the dishes unwashed…and…I rested until early afternoon…when…the rain came and the temperature dropped…and…suddenly I felt great again…

But…the bed went unmade…the blog unwritten…the dishes unwashed…well…I had made it that far into the day without doing them…I didn’t see the point in starting then…and I had other…fish to fry…as Mama would say…

I’m writing this today…because…there isn’t a lot of information about recovery from…Chiari I Malformation…and…that’s partly because…until a few years ago…many people…doctors included…had never even heard of it…although with MRIs…it is becoming a more common diagnosis…so…there hasn’t been time for a lot of studies and research into the long term effects…

The other reason…is that there is no one predictable course…everyone is different…as would be expected considering the nerve damage the Chiari causes…also…any co-existing conditions the patient might have…

I get numerous hits on my blog…from people who are seeking information…what to expect from surgery…what to expect in recovery…what to expect from life…

I will say for those of you who are seeking such information…my herniation was significant…35mm…all the way to T-1…and I had a thin syrinx from C-1 to C-7…I was 56 years old…my primary symptoms were…headaches…numbness of my face, arms, and hands…and increasing episodes of choking…and overall just not feeling quite right…the syrinx was detected by a Chiropractor who was looking for a ruptured cervical disc…I then went to a Neurosurgeon for treatment and decompression surgery…

I would love to be able to tell you what to expect…however…I can only share my own experience…which has been remarkable by many standards…but…slow and cantankerous…by mine…

I think…I know…I wanted it to be like my tonsillectomy…once it was done…my throat was sore for a few days…and then…I was back to my old self…

But…it didn’t happen that way…I guess…it’s just not the same with…brain tonsils…I was off work for three months…and…honestly didn’t feel like going back then…but…I did…knowing that I only had to survive two months before having…two months off for the summer…I ended up working four days a week…for the remainder of the school year…

For the first six months or so following surgery…I had a low grade fever…every day…which was controlled by taking ibuprofen…we never found a cause for it…no infection…or anything like that…probably just my brain parts readjusting to having a bit more room…

For the first year…I also had almost constant…low grade nausea…and craved…carbs…and…ice cream…which wasn’t the diet I’d planned for weight loss

The next year was better…but…I continued to be exhausted…not even having the energy to exercise…as I had hoped to do…

Last summer…I went gluten and sugar free…and started to feel better…this past year was a much better year…I had more energy…my thought process cleared…well…as clear as it will probably get…LOL…and…I felt like a person again…I was able to begin an exercise program…and although I didn’t push myself…I did exercise…

I continue to have some numbness mostly of my right arm…but…it’s not severe…I can deal with it…my neck gets tired when I sit at the computer for too long…which is almost every day…between writing and working as a school nurse…but…I’m learning to take breaks and change positions often…which helps…

Overall…this summer has been wonderful…with the exception of a few…weather days…I feel good…I’m enjoying life again…I just released my second book…Becoming Bertha…and am considering what to write next…sometimes…I think I should write about…Chiari…but…then again…I just did…

Jane

PS…please feel free to leave comments or contact me via the contact page…if you have questions…