This is going to sound mostly like a rant, but I so desperately need to blow the steam off. So if you don't want to read it, I'd turn back now. For those of you that choose to read this .... Thank you. I'm eternally grateful to having my Healing Well CP family to help on days like this, even if it's just to "listen".
So as some of you may or may not know on February 14th I completed my 10 day trial period with a spinal cord stimulator unit. I had posted during my trial about how wonderful it was. And it was! For the first time in 3 years to not have my daily life dominated by my pain, or by my need for my meds; it was so wonderful. It was ... liberating.
And then it was over, and my hope with it. In one swift moment, just as quick as the doc pulling the temp leads out of my body, my hope for an improved future went as well.
I've gone through sorrow, rage, depression, back to rage, back to depression, to sorrow. And round and round, like a vicious cycle my emotions rage.
The part I'm leaving out is this: I had known going in the surgery was risky. I had been informed, before my trial surgery, that three seperate surgeons had ended up with complications during their procedure and their three patients had ended up paralyized.
The words were enough to stick in my throat, like a pill I'd swallowed wrong and couldn't get down. Paralyized. Wasn't living with my pain punishment enough? Did I have to stare that ugly option in the face and decide which way to choose?
On one side of the scale is an SCS unit, meaning pain mostly gone life, the return to qusi-normalcy, a decrease in meds.... yah there's things that come at that cost, but minor. Decrease in sensation in my hands? Minor.
On the other side of the scale is paralyzation. And they say it can occure at the surgical site. Well given how far up my leads go does this mean from my lower back down, or my neck down, and either way you cut it it also means saddling my mother and father till they're gone, and then expecting my son to help take care of me. Also could I live like that? I love to build things with my hands (regardless the pain). Could I give up all that my life has become, the only things that keep me going? Could I give up riding my horse, playing with my son, even just the casual joy of going for a walk, or swimming?!
Can I put who and what I am on the table as the price to pay if things go wrong?! I'm 37 with a 8 year old little boy.... how do I make that choice?!?!?!
It's accademic right now. I guess after the last three complications most surgeons in my area aren't even doing the surgery any more. That's where the mad part comes in. I spent all that money for my mental test, and eventually I'll see a bill for my trial surgery and such.... and now even if I get told the odds are in my favor so I choose to get the surgery, there isn't even anyone to do it. I guess the cervical ones have more risks then the normal implants. It's not like the unit itself is going to be implanted up there, but it's the fact that the leads have to be shoved nearly all the way up to my brain stem, and then given they "attach" the leads now with small sutures, it means going into my neck area to suture the leads into place; I guess that's where all the extra risks come in.
If no one wants to do it now I wish I'd never done the trial. Not just because of the monitary pain it'll bring me, but because I feel like I've been given false hope; I've had something bright and shiny dangled infront of me, been allowed to experience, and then had it taken away, never to see, or feel it again.
I just don't know what to do. I feel lost, and as a result my depression has become soul crushing. No one in my family seems to understand, so it makes it hard. My mother's overly optimistic and convinced even if the worst happened I'm strong, I'd be able to carry on. My boyfriend is overly optimistic and convinced the odds are in my favor and I'll be fine. I mention to them both "what if". My boyfriend won't even consider it, and my Mom, well she's convinced I'd find a way, and that my boyfriend would still want me... sounds like a stupid Disney Movie. I've already had two people walk out of my life because of my disability; the first was there when I got hurt, and he didn't even stick around long enough to find out what was wrong. He just figured I was faking, being lazy, etc. The second... my own husband left me. The pain wasn't the sole reason, but it was a major contributer because my pain got in the way of his happiness; and that's a direct quote. So I can't count on anyone to be there to help, and it doesn't seem fair to potentially burden him with me. And even then that also means I'm having to count on him being there for me. He deserves to be able to have his own future, his own life, to experience it to the fullest without having to take care of his mother. He's already had to do enough of that in the last 3+ years. I still can't even decide if I want to do it or not because I still don't have a surgeon to do the procedure, and I can't really afford to travel. At most I could handle finding a surgeon in California as it's next door to Nevada and I have alot of family still there. Anywhere else is just impractical; I don't have the finances to make that sort of trip. And I really want to talk to one, find out more info, find out the odds. How man are performed in the states in a year, how many are successful, how many have complications, how many this surgeon has done of my specific kind, etc. I can't make an honest choice until I have an educated answer.
See, even my post goes round and round just like my head!! I'm so confused and scared, angery and frustrated. I just don't know what to do. I mean if my PM doc can find me a surgeon do I take the risk knowing what I could gain, but also knowing what the other outcome could be? I just don't know..... And of course my pain is back, in all it's raging glory, so that doesn't help.
I'm sorry this post is so long.... but thank you for letting me get it all off my chest. Even if there isn't anyone here to dry my tears and hold me, it's still nice to know I have my friends here who do understand. Thank you.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled and on Percoset for pain.
Hoping 2011 will see my spinal cord stimulator unit finally implanted.