Hugs request
#354604 - 01/15/10 09:27 AM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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Hey everyone.
Good news, my tum settled down size the holiday stress has ended. Bad news, my head pain has been off the charts.
If you read my posts, you'll know I have Chiari Malformation - a congenital defect where my brain is too large for my skull. My brain is compressed at the back near the spinal cord. The result of the compression is headaches that blow migraines away like dust in the wind. And facial numbness, numb hands and arms, trouble speaking, seeing, thinking, dizziness and drop attacks (like fainting without losing consciousness). And there's more.
There is only one solution for Chiari - surgery. I was diagnosed in June, I've seen 2 neurosurgeons, and I've sent my MRI to a 3rd in the US (but I don't have $100K to go there for surgery). I was given the option of whether or not to choose surgery based on my symptoms and quality of life.
I've decided to have the surgery. It will be in Toronto 1800km away. I can't keep up like this. Since Dec 31st I've had a headache nearly every day, and the last 3 days have been 8 or 9/10. And I spent 5 hours in emerg yesterday, had a CT scan to check for hydrocephalus (water on the brain), and I'll be called for an MRI within the next 6 days. It's been bad, very bad. I'm off for the 2nd day in a row at work. I hate missing work. And there are no pain pills I've found which I can tolerate that actually work. So all I can do is rest, wrap my head in ice packs and stay in the dark.
Looking for some hugs as I wait now for the surgeon to give me a date and the strength to get through the pain until that time.
Thanks in advance,
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up! 
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Hey Toady,
Here praying for a quick surgery date!!
I'm sending positive thoughts your way.
Is the doc in TO as good as the ones down south?I'm sure they are but keep us inform.Good luck to you!!!
On a lighter note..if your brain is too big for your head..does that mean you're smarter than the rest of us?
Chris
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IBS-D since 1999...mostly stable..i do cheat too.Bad me.
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Cassandra love - I am sending you lots of hugs and my prayers to help you through this difficult time. I hope the docs get you in quickly so that you don't have to suffer with these painful headaches anymore.
XOXO
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Janey
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Hi Toady! Dragonfly beat me to the joke about your brain being bigger/smarter. Darn! I wish you a safe surgery and a quick recovery and I sincerely hope that ALL of your pain is relieved.
Please let us know how you are dong. I will say many prayers for you.
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Many, many, MANY HUGS to you, Cassandra. I read your blog not long ago, I just can't imagine what you're going through. I think you're making the right decision, and I wish you the best of luck getting through it all!! How long is the recovery? Please keep us posted!
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Lisa, IBS-C (Vegan)
Stable since July 2007!
Mommy to Rhiannon Marie (Dec. 13, 2008)
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Cassandra -
Along with all the others, I have to send hundreds of hugs and let you know you will be in my prayers and on my prayer group lists...
I do pray for a miracle of God so the pain will end and you won't have to go through the surgery. But, if you do have to walk through it, He will certainly be right there - going ahead of you to prepare the way.
I am somewhat familiar with this condition. I had a student seveal years ago who had it and had to be home schooled and eventually quit school. Then, my friend's daughter was diagnosed with it. She first saw a neurologist and he told her she was constipated and the headache was from straining - plus, to eat more lettuce!!  Can you imagine????? Like you, her headaches were so severe she even had to be taken by ambulance to the ER one night. She finally saw a local internist who has the reputation of being "the doctors' doctor" and he did another MRI. This MRI showed the malformation and when compared with the original one, it was there from the beginning - when the neurologist told her she was constipated! 
She went to Cleveland Clinic here in the States and they recommended surgery, but she has yet to have it. Her headaches have subsided and she has chosen to live with it as is for now. I think God must have had a hand in all this because she was where you are now as far as the pain.
So, if He did it for her - I'm praying He will do it for you too, Sweetie.
Please keep us updated on every step - we're your cheerleaders! :-)
{{{{{{{HUGS}}}}}}}}} - Dorothy
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"I Will Survive! :-)... I shall live and not die and declare the works of The Lord..."
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Cassandra, Hugs to you, and Prayers for your well-being!
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THE FRIEND WHO JUST STANDS BY
B. Y. Williams
When trouble comes your soul to try
You love the friend who just "stands by".
Perhaps there's nothing that he can do -
The thing is strictly up to you;
For there are troubles all your own,
And paths the soul must tread alone;
Times when love cannot smooth the road
Nor friendship lift the heavy load,
But just to know you have a friend
Who will "stand by" until the end,
Whose sympathy through all endures,
Whose warm handclasp is always yours -
It helps, someway, to pull you through,
Although there's nothing that he can do.
And so with fervent heart you cry'
"God bless the friend who just 'stands by'!"
Cassandra, Looks like you have many friends standing by.
You can add one more.
Bless you always. doublej
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 Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow”. Mary Anne Radmacher
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Re: Hugs request
#354632 - 01/15/10 07:46 PM
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Sand
Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)
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Cassandra, I'm so sorry to hear this. Please consider yourself hugged - very gently - and I'm keeping my fingers crossed you get a surgery date soonest.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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Oh, Toady! I've been reading...I'm so sorry to hear. I have migraines so I can only imagine. I will certainly keep you in my thoughts and prayers. You are a great woman. Big hugs to you!!!!
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Flipada - IBS-C "It's a gas, gas, gas"
**Lauren**
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