At my appointment today with my neurologist, I got a bomb dropped on me.
My pump was put in wrong.
You read that correctly. My pump was put in wrong.
It was put in wrong and that’s why it never worked. The tube that was supposed to go to the space inside my spine where there nerves run, but the surgeon didn’t get it in there. And even a year after, reviewing a dye study of his work, he missed it.
My surgeon is working on what happened and what the next step should be. But he did tell me that he would figure out if I should:
a) Correct it and try again
b) Get a new pump because this one is all kinked up and ruined (his preference)
c) Go the Spinal Cord Stimulator route
And he said he’d be my surgeon.
This explains so much. The pump trial was so successful – it was almost miraculous. But then the pump never worked. It explains why I’d get migraines every time the dosage was increased. It explains a year and a half of things.
But right now I am grieving. I’m grieving what I lost since August 2007, and what I’ve suffered. And right now I am not sure if I’m strong enough to keep trying. This fight has taken so much from me and everything out of me. Almost everything.
PS The picture is a shot I took of one of my CT films. If you look closely, on the right side of the picture you can see a bit of white sticking out. It is scar tissue where the tubing of the pump is kinked.
My pump was put in wrong.
You read that correctly. My pump was put in wrong.
It was put in wrong and that’s why it never worked. The tube that was supposed to go to the space inside my spine where there nerves run, but the surgeon didn’t get it in there. And even a year after, reviewing a dye study of his work, he missed it.
My surgeon is working on what happened and what the next step should be. But he did tell me that he would figure out if I should:
a) Correct it and try again
b) Get a new pump because this one is all kinked up and ruined (his preference)
c) Go the Spinal Cord Stimulator route
And he said he’d be my surgeon.
This explains so much. The pump trial was so successful – it was almost miraculous. But then the pump never worked. It explains why I’d get migraines every time the dosage was increased. It explains a year and a half of things.
But right now I am grieving. I’m grieving what I lost since August 2007, and what I’ve suffered. And right now I am not sure if I’m strong enough to keep trying. This fight has taken so much from me and everything out of me. Almost everything.
PS The picture is a shot I took of one of my CT films. If you look closely, on the right side of the picture you can see a bit of white sticking out. It is scar tissue where the tubing of the pump is kinked.
Okay so I'm just stunned. I tried to call you, and I'm not sure what I was going to say, but I am seriously just stunned.
ReplyDeleteYou are strong enough to keep trying, because if this surgeon can fix it...
I will come and cook and clean if you need me too!
OK. It does explain a lot and my first reaction is to either (a) go postal in that surgeon's office, or (b) get a good attorney. It's true, if we think about the suffering &/or wasted time, it will make us crazy. You've a right to grieve; it's a terrible thing. I DO see some hope now, however, in that we know why something you tried didn't help. Now we're somewhat closer to real help? How depressing it must be to think of it all; how difficult it must be to dare to have hope that this new guy can do something; how hopeless it seems when you realize how inept a large portion of the medical profession seems to be! But you are a VERY strong woman. You have survived the most miserable of times, and I KNOW that you can move forward from this point. If it takes some time to get to the "moving on" stage, it's OK. I've learned grieving is an important part of life, so go ahead, grieve. Scream into a pillow! Cry until the sobs take your breath if need be. Then, when it's time, your strength and determination will be there, right where they've always been.
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