3 Days Post-Op

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3 Days Post-Op

Postby BabyHead » Sat Apr 18, 2009 9:46 pm

I can't believe I am sitting up and typing with all my facalties intact. The first DX was in Aug of 05 - w/i 2 wks I was at Stanford having the first of many memories of "what not to do"...I was 36yo, had a great job, lived in a beautiful place...except for the times when the HA got to the "gotta go Ostrich"....forgive me if the spelling isn't there yet - I call it "ostriching" because for as long as I can remember when my head would hurt, it would go down...as if to bury it in the sand away from the painful light...well, everything has 2 ends and with the head down....my bottom goes in the air - that technique Coupled with a hearty "SNAP, CRACKLE, KAPOW" when under stress or rather "over pressure" it was only a turn of the head away and there was instant relief....until that faithful 1st visit to the NS, whom quickly, in a foreign accent wrote out 5 different RX without batting an eye....could nearly hear the sound of "gun fighter music" - as I turned to grap the door and walk out - my neck "popped" and she gasped, told me she wanted ANOTHER MRI...to "Rule out a disease I am sure you don't have", "yet, I must rule it out, it is very rare and can occur with CM"...at the time I had no idea that I had been DX with CM at the ER on that faithful summer day. The memory of how I felt when I walked out that day will stay with me always. The following couple days were spent in a dark room, vomiting & fighting a whopper of a HA...yet, there were bills to be paid and money to be made and as long as I was "allowed" to work I did. The day I went in and told my boss he was hesitant to grant additional time off and didn't want to make a habit out of it - this is understandable, especially with a small business...he didn't want us going on-line eiter, so if we needed to look something up - we would have to ask him and he would go to his office....that day as he began to get edgy, I asked "Will you please go find out what this Syringomyelia thing is so I know if I should worry or not ? " that was early in the morning and when he reappeared at lunch to relieve me, he slid a few sheets of paper to me and told me to go read them, there were some interetsing facts....we all know the doom and gloom side - yet I was not prepared - then again whom is ?? Now, after 2 neuro, 4 spine procedures & 16 LP's in less than 4 yrs...just wanted a little reliefe from the suffering...just long enough to get up some strength to do it all again. The first few weeks I was just so happy that someone finally told me what was wrong...I wasn't just another neurotic woman The story though very long in itself is probably like many of yours - yet what I wonder is if we are the only ones that ever hear, read or write about us and "our" CM/SM - as we all know, this too is unique to each person with the disease - we all may share a few common components - yet our disease is unique as the way we find to deal with it, evolve and with a lot of hard work - hopefully I am not the only one here - after a 4 yr battle - this is the best I have ever felt in my LIFE !!!! This is the best I can ever remember feeling. There are no regrets here, just praise- I am here to scream from the rooftops - there is such a thing as a Happy, well adjusted, much deserved, best quality of life you can get if you just keep fighting. The last year alone I have lost 77lbs - most look at me and say "good for you" - "you look great", until the food comes and I have to projectile vomit and if that isn't bad enough - it's so violent the dog whines by the door because he's worried - yet, on the 15th of April, I awoke to the life I had never known and now will not settle for anything but the best for my body, mind and spirit....having this disease is rough and most often our loved ones seem to almost try to avoid talkingf about it....at least that's been my experience - sure people will be polite and listen to you - yet, they will never "hear" you because it's too hard for them to process the initial "uh-oh it's brain surgery" canned response - it is scarey and the thought is twice as bad for the one sitting there waiting to go ito the OR - but, this time instead of going in with worry and anxiety -
I went in with Faith and Peace
I had faith things would turn out as they should and was at peace with whatever the outcome was to be....
The results are amazing and I feel so good". Well, thank you in advance for taking some time to read this, I know it sure feels good to be able to hold my head up and type without feeling car sick... :mrgreen:
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Re: 3 Days Post-Op

Postby jupes » Mon Apr 20, 2009 9:24 am

Glad you are feeling at your best! :D It helps to here what others have gone through! Take care!
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: 3 Days Post-Op

Postby youngwife » Mon Apr 20, 2009 10:18 am

How wonderful! I am so happy that you are feeling so much better. Take it easy, and try not to overdo it! :)
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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