If your considering a SCS implant and or your doctor has recommended one for you a trial is planned first. I thought it would be appropriate to tell you a little about what it is like. I wrote about it on May 14th as part of my history. I'd like to give you a little more information.
To start, my experience was by now means pleasant. Mr. R. still can't believe that I say that the trial was worse than the actually surgery implant. Now when I say that, what I mean is the first 36 hours of post surgery was tough and uncomfortable. After that is was possible to get comfortable. Sleeping was not one of them but not everyone will have their battery place in the buttock like mine. I only took an extra over my "normal" dose of pain medicine for the first 2 days then I was ok. During the trial I had awful muscle spasms. No warning of this. In the blog I've mentioned "Chronic Stimulation" she mentions she has the same experience. So much so she decides to do it all over again some months later. Brave one she was. Like me, she was hurting so much she didn't feel she had a true feeling of if would provide relief or not. The second time she has it in for longer . 5 days I believe.
So you go in the dreaded ice cold room, again on the table to expose your back side. You can feel them cleaning off your back and then the stick for the local to numb you up. A small stick is made in two areas and the leads are place in through a tiny tube and then when they are in place they take the needle/tube out and you have these two wires hanging from your back. The two wires connect into a plastic piece and then into the trial stimulator. They discuss with you before getting you off of the table where you are feeling stimulation and then tape everything in place on your back. By no means are you perfectly stable. You really have to be careful not to jerk the things right out. If you do, guess what? Its over. You have one in place to play with. Not comfortable to sleep with. Made me really nervous.
Within hours of getting home the spasms started. Not anything pain medicine would help. I just kept thinking, how in the heck will I sleep. The first night I was so scared to death of ripping them right out of my back I didn't even use it. By the time morning came I really just wanted the darn thing out it hurt so bad. I didn't even feel my "normal" back pain. Only this new misery they added on. By mid day Saturday, no better but I was running the stimulator and trying to do what they asked of you. Things that typically make your back hurt to see if this helped relieve the pain. I couldn't feel my back. Crazy I know. I'd never experienced pain in my upper back.
I had communicated with Mr. R over the week end about how uncomfortable I was and he was confidant it would ease up within the next 12 hours. By Sunday, (it was placed on Friday) I was really depressed about the entire process. Mr. R was really bothered by the fact that I was so up set and he got in touch with my doctor to get approval to leave another day and have me meet with his co-worker, he was not available. This was done on Monday. I was just starting to get some relief but it was still pretty uncomfortable. I remember the drive there. We worked for an hour and I just couldn't take it any longer and went home. Another miserable drive. Still no coverage where I needed it! Total bummer. I just thought this was just not an option for me. I was crying waiting on Tuesday in waiting for my doctor to come in and remove the leads.
This process my dear readers is the easiest of anything I've ever had done. Was I nervous about it? Absolutely! And every other persons testimony I read said the same thing. They were nervous about it but it was the easiest thing they'd ever had done. Matter of fact taking the tape off is the hard part. That hurt! He told me to take a deep breath and on my exhale out the came. Like spaghetti noodles. He showed them to me. Those are the darn things that have been making me miserable? It was so fast, and I never felt a thing.
We talked about my experience and he wanted me to think positive because it wasn't a total wash. He wanted me to see the partner in his clinic who actually does the surgery because they was a new lead, a paddle lead they were using with better coverage. Not something you'd place for a trial. He said it was so new they just starting using in November. The paddle had been around for sometime but this one was larger and had more electrodes on it. I was open to discussing it. What choice did I have. I did ask doc why couldn't he allow the trial to last longer so you'd have a better chance to tell how it was working. And he said it doesn't like to go past 3 days due to the risk of infection of being in that long without closure. I told him another doctor I saw for second opinion left for 7 days but didn't take out if it was helping you they just went ahead and closed the sites and implanted your battery. He's heard of that but not the way he likes to do it. Doctor preference. He said why use the larger leads for permanent placement if it was not for you. Larger scars and chance for scar tissue if they remove. I have scars from my trial anyway. No biggie though. Made sense to me. He also noted that a small percent of patients have muscle spasms like I did. I'm always in that small precent.
When I saw the doctor for discussing the permanent implant we talked about if I decided to do it he'd give me some muscle relaxers in case I have trouble with any muscle spasms, some patients do he said. Oh, I did. I was miserable I told him. What do you know, after surgery, not once did I experience any spasms in my upper back like at the trial. The biggest challenge I had was getting comfortable with all the bandages around the battery area making it even larger and more uncomfortable than it was. After removing at one week it was a little better but it took until now at four weeks to really be a big difference.
In the end if your doctor only does a 3 day trial and you don't think that is long enough ask him about another day or two to see what he says. I definitely could have used another 2 days at least. Some doctors go 5 and some as long as 7. Bottom line you have to be comfortable with your choice in how long you deal with this thing attached to you at all times. No bathing! Sponge bath only. Nothing can get wet. See another doctor if you don't like the answers you get.
Good luck if your deciding. Going to the sites of the different stimulators are very helpful too. I found a video on line where the entire thing was on video but wouldn't recommend it. Remember it is a different experience for every one.
GNA and wishing all pain free days
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