Monday, September 20, 2004

An Anniversary of Sorts

I spent most of yesterday in bed because I was so sore and my brain was telling me, "No more, Val!  No more!"  I had run myself ragged again which is very easy for me to do.  I have to live within a daily envelop of energy and if I am unwell or if the weather is poor or if there is something exciting going on (say a flood!) that takes up all of my energy and zaps some for the next day.   I was looking at the date today and realized that I had  passed up my two-month anniversary of my surgery without even realizing it.  It was on the seventh of July!  The surgery seems like it was so long ago.  It wasn't because I have only two inches of hair to prove it!  Quite a few of you have written me or asked me what my surgeries were about so I decided to tell everyone in this entry and celebrate today for two months of being so much healthier than I was the last five years!!  Sounds crazy because I just had the surgery, but when you have alot of cerebral spinal fluid on your brain taken off and the swelling gone down, it is just amazing what kind of energy you get back and, wow, the brain works again!  It actually thinks sometimes!  The picture above, which some of you may recall seeing in my beloved sister, Krissy's, journal  was taken the day after my surgery.  There is sweet Chelsea with me.  She came and stayed for six days with me.  She had nothing to do.  We were in Baltimore and if any of you have ever been to Baltimore recently, it is a very dangerous place for an 18-year-old lovely girl.  So she had to stay in the hotel the whole time.  She never complained once.  This was the week she decided to come live with me. 

What were the surgeries?  I guess I will start at the beginning.  My first surgery was 1 1/2 years ago (Feb. 2002).  I had a suboccipital decompression, craniotomy, and laminectomy of c-1.  This was for Arnold Chiari Malformation Type 1.  What, eh?  What did she say?  Boy, I have had to learn some interesting concepts and some things about the brain that Iwould never, ever have thought.  Basically, though, they took out a little bit of the skull and made room for the brain that was pushing through and they took adhesions off the brain, and made the hole (foramen magnum) that the spinal column goes through bigger... yadda...not a surgeon.  The second surgery was for pseudotumor cerebri.  I received a ventriculo-atrial shunt.   Chiari (Kee-are-ee) to put it in simple terms is usually congenital and is when your brain does not have enough room within the skull and is pushed through (the foramen magnum) into the spinal canal.  It is measured in millimeters.  Most people start getting symptoms within a couple to 5 or ten millimeters.  I was at 22 millimeters when I had the surgery!  It was astounding and pretty rare to see that extent of herniation.  At that extent you can usually find paralysis and sometimes death.  I was very lucky that I did not have a stroke!  So, having this for years and years and not knowing what it was, has caused me alot of physical and emotional pain.  Since all of your bodily functions pass through the spinal canal and are run by nerves and chiari pinches those nerves, alot of my bodily functions were affected and still are today.  I spent many, many years thinking that I would find whatever it was that was making me "see double and triple" visually and hurt and feel like I was walking around in "pea soup".  It took the doctors so long to figure out what was wrong because when I was first sick, as a child, the MRI was not invented yet.  As I got older, I was already known as the anxious child and perhaps this was "anxiety and psychosomatic".  Grrrrr....that was so awful for me to be labeled psychosomatic.  Then as an adult, they said everything was my fibromyalgia, but I knew differently.  It was found on an eye exam when my vision started failing as these disorders cause swollen optic nerves and blindness.  Now, the second surgery, for the shunt, was much easier than the first surgery.  It had much less healing.  They placed a shunt from my brain to my jugular vein.  It takes the excess CSF fluid from my brain and dumps it into my jugular.  Most people have it dumped into their abdominal cavity, but I have had too many surgeries there already.  I had to have a shunt put in because the first surgery alone was not enough to take care of my most meanacing symptoms and I still had migraine headaches and swollen optic nerves and back pain and hip pain and a stupid swollen brain!  Now, my fatigue isn't quite as bad, my brain allows me to think a bit better, my headaches are about 50% what they were, my eyes are alot better, and well, the best thing of all is that the doc saved my life and my eyesight!!  What could be better than that!! 

19 comments:

  1. You have really been thru a lot...I'm glad you were able to find out what was wrong and get this taken care of

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  2. {{{{{{{{{{{}}}}}}}}}
    http://journals.aol.co.uk/sdrogerson/SpecimenDays

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  3. Thanks for sharing this with us. You are one brave lady ((((((((((((((((((((((((hugs))))))))))))))))))))))))

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  4. Happy Anniversary Val!  I am glad the decompression made you feel somewhat better and the shunt made you feel even better.  So glad you are alive! -Krissy
    http://journals.aol.com/fisherkristina/SometimesIThink

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  5. Val Val Val!!  Happy anniversary hon.  Am sending you lots of energy thoughts, you know about my super powers, right?  Swish swoosh and all that!!  I'm glad you have Chelsea, she seems like a real nice young lady, and she's very beautiful.  Take care sweetie.
    Sara   x

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  6. im glad that you take the time to get on aol and write to us.  it had a profound impact on me. im glad you are doing better, and i hope that you stay strong.  i'll be praying for you! -amanda-

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  7. Too brainy...well that explains a lot! ;-) So glad you are feeling better.

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  8. WoW, you have been through so much.  I'm glad though that the problem was found and resolved.  I pray that you have continued health and strength.

    Monica

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  9. My goodness, you have been through the ringer! It is difficult when you "overthink"everything. Take care of yourself, and congratulations onbeing chosen by AOL. Margo

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  10. When a newborn's skull is already prematurely fused, isnt that a typ of chiari, also?  Anyway, I'm glad you're feeling better now, and hope it continues to improve and stays that way!  Thanks for sharing your story.  Take Care,

    Cat

    PS--I know Balti very well!  My mom is from Towson. I adore Annapolis and Ocean City :)

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  11. Val, you are an incredibly brave lady.
    Becci. xxx

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  12. Your amazing.......am sure you know that, but I'll say it again......your just amazing. ((((())))) xxR.

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  13. Oh you are so brave...you are an inspiration...thank you so much.

    Amy

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  14. gosh, you have been through so much Val and yet you are still there to support others when they need it. You are one special person and I feel privileged to be a friend of yours :).................Jules xxx
    http://journals.aol.co.uk/jules19642001/Itsmylife/

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  15. Oh Val, you are a miracle rising. (((((((((( Val ))))))))))

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  16. Wow, Val!  That is incredible.  Next time you come to Baltimore though, let me know.  Im only a few miles down the road.
    BTW - You look sooooooo much like your mamma!!!  :-)   Love you bunches, Jen

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  17. That is quite a journey you've travelled. You are a very strong person...you will enjoy life so much more because of what you've gone through. :)

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  18. i just got done adding an entry to my journal rambles and i came to yours in editors pick and as i read i relized my problems are not that big of a deal. you are a very strong woman. an amazing person from what i get from here. you will be in my thoughts and prayers val. i wish all the luck with the healing physically and mentally. your daughters seem to be your little angels watching over their mommy. amazing how someone is willing to take their time and stop their plans to be with you. not to many people in the world like that. i hope you have a succesful recovery. may god be with you.

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  19. I came across your journal by accident and am so happy that I did.  I will be reading it from the beginning. I am so happy you are feeling healthier now.  Can I ask you how they finally found out that this was what was the problem?  LuAnne

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