Nine months later it was determined I have a Chiari Malformation type 1 with a Syringomyelia . I had surgery to to relieve pressure on my brain stem. posterior fossa, decompression with laminectomy of C1  dura graft was harvested from my left leg.

Some of my symptoms I had most of my life but didn't realize there was a condition related to it. These became worse after the accident my legs have always hurt. They have always ached especially at night. I can remember moaning with pain in the night because they hurt so much. But didn't know why they hurt.  I didn't have headaches until after the car accident. Then it became almost unbearable.  Pain in the left shoulder that radiates to my hand and to my pinky finger. My left hand and fingers are always swollen they always hurt, but some times more then others. I find that if you hand me something, I will take it but usually drop it right away. Seems as if I can't feel things and I don't put enough pressure to hold it in my hand.. I am so afraid to hold my grand nephew and twin nieces for fear I will drop them. Fatigue is always a problem with me and always has been. I always wondered why I am so tired all the time. I love to work out in my flowers but I  go out and work then come in and lay down for a while and go back out. Now that I am older my laying down time is longer.

My job is not to bad because I sit down and answer incoming calls. The stress level is really high though so when I go home I have to lay down for a while. And I feel my legs are so tight, If I get up to take a necessary break my legs hurt a lot until I have walked some, then they work better.  My biggest fear is to be going around Wal-Mart in my electric chair because I can't walk any more.

I feel like this condition has big time control over me and my life. In the past if I felt myself gaining weight I would hop on my bike and ride. Or pop in a Jane Fonda exercise tape. And exercise with her.  I would ride my bike in the evening.  Now I can't do that any more. My balance is gone. After a crash on my bike my husband got rid of my bike. So he could be sure I wouldn't ride it any more and fall off. So now I need to find something to do for exercise in my home that way if I fall down at least I will be on the floor in my home and not two blocks away on my butt in someone's yard.  I need something that I can ease into. I need to get my strength up. Sheez what if I need another surgery down the road I am so out of shape would I make it through the surgery again?  YIKES what a horrible thought.

After surgery my surgeon told me I am going to live out my life span but will never have a normal nervous system again. I asked him what does that mean?  He gave me a blank stare like I don't know you will figure it out in time . So now is the depression and the panic disorder part of that? And what about the other things?? UMMM ???  

Also in last 2 years each day around 10:30 a.m. Then again later in the afternoon and sometimes in the evening. I start with a red mark on my left hand below the joint on my thumb it is about the size of a twenty five cent piece.  Then my right arm, fore arm and elbow turn red. And my foot on right side turn red and HOT . It moves up to my knee. Also my chest and face do the same.  It will last a few hours and at that time my heart is beating so hard because all the blood is at the surface of my skin and not flowing through my heart.  My legs and feet swell too. That really tires me out. I have been checked to see if I am diabetic and no that is not the problem. Lupus is not either,  I have had so many tests to find out what is causing that but so far have come back with nothing.

At the time of this writing it has been 10 years plus I feel my legs getting weaker it seems like stretching them is not doing the trick any more. Stretching my legs and exercising them does help, but still no matter how much stretching I do to them they never feel like their stretched enough. I have been going to the a Chiropractor for years and continued to go after my surgery. I know most say Don't go to one. But he does help me to move better, he don't twist my neck or extend it. He has  done some research on it. One of his seminars was on the subject of Srynix. My main adjustments is for my lumbar and thoracic area.  He did tell me on one of my last visits that there will probably come a time where he can't help me any more. He still encourages me to continue to stretch and to stay active as much as possible, get the weight down.  Yeah right!!!  If I had control over that now I wouldn't of put it on in the first place. Use to keep it off before with no problem.

Now I am not so upset that life has dealt me this hand to live with but I do find it very frustrating to deal with it. I get angry with myself when I don't feel good. I lose patients with myself.. Most of the time I do daily chores and fun things while not feeling well and in pain.  OMG.. What have I gotten  myself into now?  Exercise is the key to getting rid of excess weight.  And of course diet change. But that has been done. Exercise is the Key. But it is also a enemy to me as it gives me pain and headaches, muscle spasms  I do them at a slow pace. It takes me forever to do things now days. It costs a arm and leg to keep  going to doctors for second third and forth opinions that come back as "I don't know.." " I don't know" " I don't know.." "Your a mystery."  I can't afford to keep going to them, either financially  or emotionally, waiting for blood work to come with results and tests to come back, saying they don't know. Or nothing is abnormal, that takes its toll on me.

Thank goodness my dear husband understands and he tries hard to help me. And my mother understands too.    I try to take a positive attitude and not tell people I feel horrible when they ask, "how are you doing?"  perhaps that is why they don't understand me because I say say "FINE" In other words I am lying to them. But the truth is no one wants to know if the answer to "How are you?" is not good. As told to me by a use to be really good friend one time "You have changed and I don't like it" . "You are so negative" So needless to say I stay away for fear I might impose my pathetic negative self to any one.

However I do have an obligations that I have to keep. My dedication is a must that I have to fulfill, Now that is not a negative statement either. Or a wishing I didn't have it, I do that with happiness and give my all. There is nothing more important to me then my love for my heavenly father. And my dedication to do his will in all facets.  I do it with a glad heart. Until he says its done.  I will be there .

A lot of emotions goes with this condition. I have shed gallons of tears over it due to my frustrations and pain. And yes there have been some times that it involves the POOR JUDY syndrome.  And that Green monster ( Depression) 
I do find that I have more patients with people who are sick and trying to present themselves with a smile and I know deep down their fighting inside too.

Here is a site if you have the stomach to look at pictures of the surgery. These are pictures of Chips surgery. I have had the same surgery and I have the  same zipper on my neck and a zipper on my leg.

While you are there looking at the pictures there is a lot of information on Arnold Chiari Malformation with the Syrnix. And if you care to make a donation to the research and cure.  Donation

You can contact me at djhackney1@bresnan.net

To be reduced to this insignificant version of myself  is overpowering, but
I have learned to take over the power and make the version of myself
significant

It takes strength to fit in.
It takes courage to stand out.
It takes strength to feel a friend's pain.
It takes courage to feel your own pain.

It takes strength to hide your own pains.
It takes courage to show them.
It takes strength to endure abuse.
It takes courage to stop it.

It takes strength to stand alone.
It takes courage to lean on another.
It takes strength to love.
It takes courage to be loved.

It takes strength to survive.
It takes courage to live.