I hate to be lazy, but I can't possibly type this all out again. This contains some information that I've already posted here, but this is what I found out today:

I am beyond ticked off. Ugh.

I know I've written about this, but am going to give a short recap.

In the last year, I found out about a few health problems that I have developed. There are two that affect me the most. One is POTS (postural orthostatic tachycardia syndrome). The other is peripheral neuropathy. I have a pretty severe case, and deal with a LOT of pain--it is constant.

In October I had a trial surgery to test out a spinal cord stimulator. I had 100% relief for the three days I had it in. It was AWESOME. I got the okay to move forward with the process, and the permanent implant was placed on November 10th.

On November 17th, the SCS was turned on. As we were programming it, I was having such a hard time. I couldn't feel it in my feet, so I didn't know what to say when he would ask me if it was good or not. I could feel it in my legs and halfway up my stomach... but not where I needed it most.

I didn't think TOO much about it, because I have nerve damage in my feet. I struggle to feel any sensation except pain due to all the numbness. We finally settled on some programs, and I went on my way.

Day after day, the pain just kept getting worse and I became more frustrated. Wasn't this thing supposed to be helping me? It's supposed to help 50-70% with pain relief, so I wasn't stupid enough to think my pain would be totally gone... but I wasn't getting ANY relief!

My pain management doctor thought that it was probably because my family doctor took me off three medications at once, so he put me back on the fentanyl patch for pain. That isn't helping at all.

Everyone around me wanted me to see the rep from Boston Scientific and get reprogrammed, but I just KNEW that that wasn't the solution. I could tell that the problem was NOT that the program settings needed adjusted. It's that I can't feel it at all, no matter how high it is turned up. That means that it is probably in the wrong spot!

Finally someone listened.

So today I went to the clinic and had an X-ray done. Ugh.

When I did the trial, they placed the SCS at the T8-T9 area of my spinal cord. I had 100% relief (with medications).

My doctor pulled up the X-ray from the day the permanent implant was placed. It was partially in T8, but only halfway. It went to T11 or T12, which explains why I feel it so high in my body (up into my stomach and back).

So it was placed incorrectly! It is just BARELY off--1/2 of T8 isn't covered. I don't know anatomy and I don't know if that T8 area is where the nerves are that reach my feet or not.. but that's the only difference is that all of T8 isn't covered and I am not getting relief.

THEN... the x-ray from today. Now it's from T9-T11/12. So after it was placed (in the wrong spot), it MOVED.

That isn't supposed to happen.

There are two options for a SCS--leads or paddles. Leads are wire thin and require a less invasive surgery. The paddles are thicker, and bone must be removed to fit the paddles into place. I had the paddles placed. They aren't supposed to move. They are supposed to be secure. They tie the paddle to the bone to make sure it doesn't move until the scar tissue forms.

So now I'm stuck.

I had the surgery.. it was painful and expensive.

It wasn't placed correctly. And then it moved.

After surgery, the nurse told me I had NO restrictions as far as physical activty went. I knew better. I have talked with a lot of people who have SCS implants. They say that they can't lift, bend, twist, etc after surgery. Even though the nurse said that I was free to go on as normal, I was EXTREMELY careful in what I did each day.

So either I did something I wasn't supposed to and it moved (which I can't imagine---I can't tell you how careful I was!) or it wasn't secured properly.

GRRRRRRRRRRRRRRR!

So now what do I do? I have no idea.

I have surgery next Wednesday and am hosting a baby shower on Feb. 19th.. so this is going to have to be put off until March. That SUCKS. I am in SO much pain and am miserable and discouraged. I'm supposed to be BETTER by now, not worse.

I haven't met with the surgeon yet, but it looks like I have 3 options:

1. Leave the SCS in and don't use it. It would be the least painful and least expensive right now, but leaving it in will prevent me from ever getting an MRI. I was okay with that when it was going to work.. but if it is going to be turned off and still limit me, I don't like that.

2. Have it removed. Probably very painful and probably expensive. And then I'm back at square one for pain relief. My only other option was a pain pump and we don't want to go there because I only have one functioning kidney.

3. Have it fixed. This is the most logical, but not an easy fix. It will require another painful surgery. It will require recovery time. My mom will be back at work, so I won't have anyone to help me. It's expensive. And how is this time going to be different? I'd hope he would get it in the right spot.. but how do I keep it there after surgery when I was SO careful? I laid around and didn't hardly lift a finger. It STILL moved. So what do I do?

I don't know. I am extremely frustrated and just want to cry.

I am sick of this pain. I'm sick of one thing going right and four going wrong. I'm sick of being stuck inside and JUST as I was getting a taste of freedom, it's going to be taken away from me. I'm upset that I won't be able to join the new Bible studies at my church and will have to stop going on Sundays. I'm frustrated and hurting and upset. Grr.

I don't know what is going to happen. I don't want to look back in a year and have this be the second surgery I wish I had never had. I didn't go into this blindly.. I researched it and thought about it and prayed about it and I was confident. Surprise surprise, it had to go all wrong...

BLAH!