Wednesday, May 6, 2009

He's always wanted a wife with a remote control!

Going and visiting everyone's kitchens and reading stories made me realize it might be frustrating that I haven't yet explained my pain situation that I frequently refer to. I found this photo online and thought it was a good start.

This is what I have implanted in my back, as of January 5th of this year, 2009. I love how this photo has everything labeled. That pulse generator? That is implanted in my upper right hip, although mine is a bit smaller, I think. Those extension wires are actually tunneled down under my skin and travel down to the implanted pulse generator (IPG). And the leads in the mid back? I also have 2 (some people just have 1). Each lead I have has 8 nodes. So I have a total of 16 nodes. More on that later.

So what the heck does this thing do? It blocks pain signals getting to the brain, simply put. When I turn it on, I buzz/tingle and the nerve pain screaming from my legs does not make it to my brain in full. This is really hard to describe, so I'll do my best. It is not a cure-all, by any means. It is considered an end-game option, for people with no other options other than implanted pain pumps.

Many people each year suffer from what is known as Intractable Pain. This is pain that is never-ending, if you can even imagine that. 24/7 pain with no relief. This is what I have. As you can imagine, it is very hard to live life with a positive attitude when you get no relief from massive pain, pain that alters your pulse rate, blood pressure, and adrenal hormone
production. Life becomes very small as your every minute of every day is spent trying to survive the pain.

I have permanent nerve damage, S1 nerve to be exact. This is the motor nerve that is at the base of your spine, and is very affected by walking, sitting, and really any movement. Prior to getting this SCS, I spent the majority of my day reclined, FULLY reclined, and still in a 6 to 7 level pain on a scale of 1 to 10. I will never again have a pain-free life, unless there is a miraculous healing from God. In the meantime, God sent the knowledge for this technology and put the right doctors in my path to make it available to me.

How did I get nerve damage? That is hard to say. 4 years ago, I was a hyper, fun-loving real estate agent literally loving life and living in the fast lane. I got my staging certification and started staging homes that I listed and homes for other agents/friends. We suspect that I hurt my back moving furniture, but we will never know. Whatever I did, did not hurt at the time or the next morning.

Here I was in January, 2005, just months before this all started. This was a casual photo I used in real estate marketing:

I had 3 back surgeries in 12 months and while my back is now stable thanks to a 360 lumbar fusion at L5-S1 with rods, screws, cages and more, I was left with the nerve damage. I struggled to find any way to cope, to deal with it. I always knew in my heart, that SCS treatment was going to be the answer and I just had to get doctor's to agree. lol

As I'm sitting here writing this, I am charging my unit. Here is what the belt looks like. That paddle gets situated over my hip and the IPG unit.

I charge around 2 times a week, all depending on how high I keep my settings. I can use my remote control to turn my unit up or down, change programs. Some programs have a constant buzzzzzzzzzzzzzzzz. Other programs go buzz buzz buzz buzz. And still others are more like a jackhammer on concrete, which isn't my favorite.

Here is what the belt looks like before I put it on. I can walk around and do whatever I want while I'm charging. It is completely portable. I love it!

I have the ANS/St. Jude Eon Mini, which is the latest and greatest in SCS technology. My IPG is just slightly larger than a silver dollar, and I barely feel it in my hip. I am what I call butt-challenged with not much of a bootay at all, so I was worried that when that was implanted, where would they put it? lol

Here is a photo of my remote control:

I carry this with me at all times. I never know when I might need to turn it off, or turn it up or down. Sometimes I have to turn the SCS off because I can set off the alarms at certain stores (HAS happened) OR get a jolt as I walk through the doors with certain alarm systems (has NOT happened). Andy likes to say he's always wanted a wife with a remote control!

So I'm a 42 year old with the body of a 95 year old UNTIL the SCS. Literally, I went from 23 hours a day reclined fully to being able to do much of what I want. I still stay reclined when I am not busy, but I am able to cook, clean, do chores, go to the mall, walk for more than 20 minutes at a time. 20-40 minutes was my limit. If I got up to do anything for longer than that, I would get horrid nerve flares that could not be controlled with anything - no medication, no acupuncture, no massage therapy, no physical therapy, NOTHING would stop those flares. The nerves are just permanently damaged. Plain and simple.

I have been over the moon excited since January 5th, as I'm sure you can imagine. I'm working on getting strength back, as I have some muscle atrophy with the nerve damage and prior forced inactivity.

I always thought I was a good actress......I didn't want people to know, really KNOW, how bad it hurt. And I thought I pulled it off in the little time I saw anyone else. When we would try to go to church and hope it didn't set me back for 5 days. But when I got the SCS, people could see in my eyes the old sparkle I used to have. They admitted that pain was written all over my face, even though I had that pretend vaseline on those teeth, smiling as big as I could smile, holding the tears back as best I could. I wanted so desperately to get my life back. And thank the precious Lord, I have. It's not perfect, I'm not a "normal" 42 year old, but I'm close enough. Andy is thrilled, the kids can't believe the difference. I still have some family who hasn't seen me yet and I hope they will just be as happy as we are when they see me. I know it was hard for my parents to see me in such pain, knowing there was nothing they could do. And I would rarely talk about it because I couldn't without massively crying.

Do you know anyone with Intractable Pain? I never had any idea the life one lives when suffering with this. I found an excellent online resource titled The Intractable Pain Survival Guide. PLEASE forward this to anyone you know suffering with never-ending pain. And if you could, spend a few minutes reading it so you can be a better family member, caregiver, friend. We lose so many of our friends when we lose our abilities, our "life". We don't go anywhere because we can't, and people just don't understand. It's not about depression, it's about sheer blistering pain.

To my utter sadness, not everyone is a candidate for SCS - Spinal Cord Stimulator Treatment. My greatest wish would be that everyone could experience this POWER over their pain. To have in their hands and in their body a system whereby they can dilute the pain somewhat. To feel this buzzing inside me 24 hours a day is so comforting. It is like being my very own massage chair. Have you ever sat in a massage chair at a salon? Well, I AM the massage chair, although no one else can feel this. Teeny tiny electrical impulses are released by those nodes in my mid-back (thoracic region). My brain perceives this instead of the pain impulses. It is simply AMAZING.

Power Over Your Pain Website

This is the first picture I took that I called "Pain-free eyes". It was the first picture in 3 years where I looked like ME. (Before I went blonde, lol.)

It's been a long 4 year journey, starting in August of 2005. Who knew? God did. And there's a reason and a lesson I was to learn through all this. More on that in another post. But I do thank God for allowing me to grow into the person I am now because of this, not in spite of it.

If you've made it through this post, thank you. I'm trying hard to focus this blog on our life, the positive, happy parts. I deeply desire to share my humor, my crazy personality, my hyper ADHD thoughts (unmedicated, btw! lol). I didn't want to "bring everyone down" by dwelling too much on what was wrong with me. I believe "What we focus on, expands", so I do my best to focus on the positives in life. What I DO have, not what I do not.

I'm known for my smile and bubbly personality - I plan to do more of it!

Have a great day!

Cheri Share/Bookmark

1 comment:

  1. I wish you all the best in getting back into your old life, pre-pain!

    Your boys are precious! Can I still call a 20 year old precious?

    Learner's Permit?! God help us, when that day comes...


Thanks so much for your lovely comments!