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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So sorry you are suffering with headaches. I wish you well on your surgery and hope it provides you with some relief!
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Re: Double J
#354649 - 01/17/10 05:31 PM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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Thank you.
That poem is very beautiful and heartfelt. And it fits my life so perfectly. I am going to keep a copy of it and send it to my best friend as well.
God bless,
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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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Thank you everyone
#354650 - 01/17/10 05:55 PM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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Even with all the nattering lately about unfriendly posts and posters, I knew I could count on my friends here for support.
Dragonfly, there's no comparing the Cdn dr. to the US dr. The one in the US does this surgery weekly. In TO, one a month. But, I didn't win 6-49 on Saturday so I can't even begin to fathom how I would come up with $100K. Gee, only $97,775 to go! Uh, no. And because I wouldn't be covered by OHIP (provincial health insurance) if I traveled, if there were complications, it could get more costly than that.
Gaga, thank you. You are such a kind and wonderful person. I can tell by your posts you are very caring and very sincere. Thank you for your prayers. I am not a religious person per-say, as I'm not baptized, but I do "talk to God" and to my dear father-in-law in Heaven when I need strength or support. I sometimes long to belong to a church but I enjoy different aspects of the different churches I have visited and never stuck to one.
Geri, I was teased the same endearing way at work. Gee, start working for a law firm and you're showing off how big your brain really is. Funny, I play "who has the biggest brain" on Facebook and I'm still only 2nd of all my friends 
And thank you Lauren, Dana, Sandra, Lisa Marie and Janey for your hugs, prayers and encouragement.
I've decided not to wait and I'm going to fax my letter to the TO dr. tomorrow instead of waiting to see my family dr. on Tues. I'm hoping for sometime in April. I already know the dr. in TO books about 2 months ahead for "elective" surgery. Who knows, with the upcoming MRI it may show it's not so elective anymore, but urgent. Have to wait and see. I hope the MRI booking clerk calls me tomorrow with the appt. date.
And I do feel better today. I'll give myself a 75%. Not too bad. I even did a few things around the house and baked banana muffins. My dear dear husband has taken over the majority of the housework and had already taken care of that for me this week. Thank heavens! Without family and friends for support I don't know how I'd make it through.
May God bless all of you and keep you close to His heart; I know I keep you close to mine.
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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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Senior female, IBS-D, presently stable thanks to Heather & Staff
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I am truly blessed
#354677 - 01/18/10 06:26 PM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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I work for a law firm and principally for 2 corporate lawyers. Both are fantastic and you couldn't find better people to work for or have mentor you.
My male boss works away most of the winter in Arizona. He comes back and forth for hearings and major file closings. So he came back today as we have Discoveries tomorrow and a closing on Wednesday. And he brought me a gift. This is the man, who is 32 years of practicing law has never given any of his clerks anything. Not a Christmas card, not a secretary's day gift, nothing. Not only did he send me flowers when my father in law passed away in July, but he brought me this today, made by his wife, to keep me warm on my bad days and for when I'm recuperating after surgery. (Now, I hope I do this right, I've never posted photos before.)
http://i723.photobucket.com/albums/ww240/elvishc/Picture329.jpg
http://i723.photobucket.com/albums/ww240/elvishc/Picture330.jpg
http://i723.photobucket.com/albums/ww240/elvishc/Picture334.jpg
It's got frogs on it!!! He asked my sister in law (who also works at the firm) what I liked, and his wife made me the most beautiful quilt.
He brought me close to tears. I had to bite my tongue.
Just wanted to share.
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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!
Edited by Toady (01/18/10 06:33 PM)
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Wow. That is really sweet. He must have told his wife some really great things about you because that is a lot of work! Oh, enjoy! More hugs to you!!
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Flipada - IBS-C "It's a gas, gas, gas"
**Lauren**
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Aww how sweet!! It's so cute!!And alot of work!!
bet It's cozy too,since its so darn chilly this year!!!
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IBS-D since 1999...mostly stable..i do cheat too.Bad me.
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Shows how much you are loved and appreciated. I love it when those unexpected, spontaneous gestures occur!
You are blessed and loved... And, probably the best darn clerk he's ever had!
{{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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Carol
nós somos o que nós somos e o descanso é merda
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{{{{{BIG HUGS}}}}} from Nelly. I hope you can find a cool, dark room and get some rest. I'm sending cool, dark restful room thoughts to your head. 
{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{more HUGS}}}}}}}}}}}}}}}}}}}}
~nelly~
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I hope this surgery works for you! Your in my thoughts and take care. I hope your pain free soon! Hugs hugs. That was really thoughtful of your boss sometimes its just the little things in life that can make all the differance!
emmasmom
ibs-c gas
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Cassandra,
There have been several responses that I have received around the prayer request for you and your present needs. I would love to forward them to you as words of encouragement. I don't know how to do this unless you authorize Heather's team to provide me with your personal email address so that I may forward those responses directly to you.
You are not alone. God is with you at this time and He will see that your medical and financial needs are met.
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Senior female, IBS-D, presently stable thanks to Heather & Staff
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Re: Hugs request
#355527 - 02/10/10 06:57 PM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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Windchimes
BTW - what is your first name?? You may have posted it, but I may have missed it. I've not been around much lately.
If you want to forward anything it's best to use my yahoo account - it's my chiari specific email.
cassandraelvish (at) yahoo.com
Thank your group for their prayers.
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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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Cassandra,
I just sent all of the prayer responses that I have received for you from our worldwide (international) prayer team. The last one was in yellow type and you may need to change that to another color (like black) to easily read it. So many people are seriously praying for you at this time. I personally do believe that God our Father is going to work everything out if you believe and remain faithful.
My best to you and much love. Keep in touch!
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Senior female, IBS-D, presently stable thanks to Heather & Staff
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