Over at The Nester's blog, she asked today about risk taking. If anyone feels like they have taken a risk, to post about it and join her party. It stopped me in my tracks as I realized I DID take a risk.
A big one.
Having been through 3 lumbar back surgeries in 12 months and still suffering immense pain, in hindsight it WAS a huge risk to move forward with the Spinal Cord Stimulator (SCS) trial and surgery. Putting wires and leads in my spinal fluid? Having a battery in my buttock? Having wires threaded down my back, mid-back to hips? Being told that a 50% reduction in pain would be considered a success. 50%?
But you know what, 50% is a LOT of pain relief, when you suffer the pain I endure. I have permanent, severe nerve damage. After the 3rd surgery that DID stabilize my back, my nerves were left permanently damaged. From what or when, no one will ever know. But the S1 nerves in both legs burn ALL DAY and ALL NIGHT long. Searing is a good word. 24/7. And on really bad days, I get what I call "lightning strike" pain - a pain that will shoot through my hips and out my toes, down my entire leg. Sometimes it is just a flash. Other times, it stays a while. Either way, it takes my breath away and if I were driving, I don't know if I could control the car. (Reason #1 I rarely drive). I've never been struck by lightning, but I imagine it would feel something like that.
After many months of suffering, my beloved neurosurgeon recommended I either try the SCS (Spinal Cord Stimulator) or get an implanted pain pump. NO other options.
I was so scared.
What if it didn't work?
What if something went wrong and I ended up in a wheelchair the rest of my life? (Any time working on the spinal cord is a huge risk.)
But I was nearing zero quality wife and mother at that point......I lived fully reclined 24/7.....shouldn't I do it for them?
What happened during the SCS trial was almost inhumane. A nightmare of epic proportions.
But at the end of the day, I STILL (even after that trial horror), went forward and trusted my neurosurgeon and trusted God that this WOULD be an answer. That this WOULD give me some of my life back.
The SCS is like a pacemaker for nerves. Have you ever sat in a massage chair to get a pedicure, or at a store? Well, I massage INSIDE my body, 24/7. JUST LIKE THE MASSAGE CHAIR. It is the freakiest thing!
But while my body is massaging, my brain is saying,"What is going on???? Why are we buzzing"? While my brain is busy trying to figure that out, my burning/searing leg nerve pain isn't getting through at full intensity. Hence, the relief I experience. When my brain figures this trick out, we will be up a creek and looking at new options, I suppose. But so far, so good.
And it did. I'm not the old Cheri, never will be. But I can walk longer than 30 minutes. I can go out to dinner, I can go to the mall, I can go to a movie with my sweety. I no longer live 24/7 fully reclined and that is a blessing. My husband got most of his wife back. He rarely comes home to find me crying. That is huge. There is only so much his heart can take. Nothing more helpless than being a man who can't help his wife. Little does he know that just letting me lay on his shoulder and cry means the world.
So today, my husband proudly tells people he has a wife with a remote control. Who wouldn't want that? lol I can turn myself up, I can turn myself down. I have to "charge" myself every few weeks. I even have fun little tricks I can do that most SCS users don't enjoy. God gave me a few little extra gifts, and for that I am forever grateful.
At the end of the day, I had to choose to trust a 4th surgeon to help me, had to trust that he wouldn't further harm me.
He helped me. An answered prayer.
I thank God for Spinal Cord Stimulation.
I thank God for technically excellent neurosurgeons.
I thank God for the most supportive, nurturing husband in the world.
I thank God for supportive family and friends.
I thank God for people who propped me up when I was ready to give up.
And I thank God for what I do still have.
I am a lucky girl.
I try hard to make sure no one knows I suffer if they see me from a distance. Only by watching closely will you notice the sparkle missing from my eyes, or you might see me stumble as I try to pretend I can still feel my feet and my balance is normal. Ever the actress.
I pray you never experience pain like this. If you do or if you know someone who does, please tell them about Spinal Cord Stimulation. I'm surprised at how many people haven't heard of it. It is designed for nerve damage pain in particular.
I share my story on this blog because there are so many pain sufferers home-bound. Finding others who understand, who truly understand.....is priceless. I love the new friends and emails I receive from new friends I meet through my story.
Other links on the right hand: Chronic Pain, Intractable Pain, Nerve Damage and Spinal Cord Stimulation.
Faith is powerful.
Hey Cheri,so nice of you to leave such kind words on my blog. I've become a follower of yours and I promise I'll be back to familiarize myself with yours and especially to see what your risky business is here. I am very interested....but off to bed for now as was working late. I'll be back.
ReplyDeleteCheri, I cannot believe how incredibly strong you are...in every way. It is people like you who inspire so many. All of the insightful stories you have shared are helpful to many people for so many different reasons. Also, all of the "risks" you have taken are documented and studied and help to improve methods for others suffering from what you do today. Your family is very blessed to have you. And, you crochet! How perfectly marvelous.
ReplyDeleteI would definitely say that was quite a risk! A huge one! Modern medical science is amazing. You are amazing! I'm so glad for you that this risk has paid off in a big way! I'm can only imagine (and probably not very acurately) what you have been through.
ReplyDeleteI have spent the last few hours reading your old posts..back to 2009..and it amazes me, no..correction..YOU amaze me more and more with each page I read. The sun is fully up now and for the first time in a while it doesn't make me cry knowing I've not slept a wink..I'm just glad to be awake. Until someone has a surgery go bad/wrong whatever, I don't think they realize what courage it takes to have another..and another..and 4 later..here you are..one of the bravest people I've ever read about or known.
ReplyDeleteThank you for the time you put into your blog and into sharing..and to doing it with such style! I'm sure it touches many people as much as it does me.:)
Oh, Cheri! I read your story with interest because I, too, live with daily pain. Your words were such a comfort and gave me such hope that if (God forbid) I do get worse, there is still something out there that could help me!
ReplyDeleteYou are an inspiration and I truly believe the Lord led me to your blog because it's such comfort to know that there are others who understand pain. It's a horrible way to be kindred spirits, isn't it? I haven't read complete story yet but will be doing that next. I just had to let you know I was here and how much you comforted me!!
I crochet, too, and fond you link on The Crochet Way. :) I'm so glad you linked up!!
God bless you - Julie
Thanks for the post. I have very similar pain issues and told my pain dr, I can't do it anymore. No more taking 200 mg a day Oxy along with everything else and still in horribe pain. I am getting to stimulator in a couple weeks and stories like yours help put me at ease. I am worried that if it doesn't work, I may one day OD just so I can stop hurting every minute of every day. I hope you are still doing well Scott
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