This picture has nothing to do with the topic of my post but it's from my mum's kick-ass hydrangea garden and I wanted to show it off. This was taken over 4th of July when the petals were just coming into their color. By the end of July, they will have darkened into glorious orbs of periwinkle blue. They are, in a word, impressive.
Anyway, I want to talk about the agonizing process that is The Stimulator Trial (I'm hearing this in a really deep and ominous sounding voice and I think you should too). There are a number of things I want to rant about in regard to stimulator trials but I'm going to do it in a few posts because 1) I'm not going to flatter myself by assuming that any of you want to read another one of my long rants and b) my carpals are tunneling.
So I use the word "agonizing" because, for many patients, evaluating whether the temporary stimulator is truly helping (in a 3-5 day period) is almost an impossible task. The trial procedure itself can cause significant post-op pain to the point that patients may have to significantly limit their movements and activities for a good portion of the trial. For this reason, I'm in favor of a trial period of at least 5 days but really think one that lasts for 7 is best (if you can swing it).
As I've previously mentioned on this blog, I underwent two trials (because I like to do things the hard way). The first trial only lasted 3 days. That was a mistake. I had my cousin's wedding to go to and was hell-bent on not going with dirty hair and wires sticking out of my dress. I did get to the wedding with clean hair but was forced to hobble around with the aid of a cane while a good portion of the guests stared at me in a way that made me feel as though I had a "Hello My Name is: Odd Cousin" sticker pasted to my forehead. No fun.
The 3-day trial simply did not allow for enough time to heal from the procedure. I spent most of the trial shuffling around my apartment in dumpy sweatpants and doing the log-roll in and out of bed. I never got to the point where I could go for a gentle walk around my neighborhood or even sit in a chair for an appreciable amount of time. Hell, I couldn't even stand up straight (and when I tried to, I caused the damn thing to start bleeding again).
The 7-day trial also offered up post-op nastiness but at least by day 3.5 it had started to dissipate. I was able to try a few activities with the stimulator (pony rides, roller-skating, and wild monkey sex..nothing crazy). But the big thing was that I was able to sit at my computer for 20 minute intervals which was pretty important given that my leg pain is always worse when sitting. By the end of the 7-day trial, I had a much better feel for the stimulator and how things worked.
Ok, I'm going to stop now because this post is becoming dangerously close to being long. In fact, I think it's already there.
Next time I'll talk about why patients shouldn't drive themselves crazy trying to figure out what % of their pain is alleviated by the temporary stimulator...
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My trial was supposed to be 3 days but I talked the doctor into giving me 4 1/2. If I had only done 3 I never would have been able to tell you if the stimulator was working or not. As it was, it was still a bit difficult after 4 1/2 but I think it worked out. I'm pretty sure that if you are unsure if it's working by the fourth day, then it's probably not working.
The flip side is that I understand why the trials have to be short. Where the wires stick out of your body is still considered an open wound. Even though it's covered and stitched up, there is still a pretty high risk of getting bacteria in there. God knows I'd rather not have a major surgical infection, especially when the incisions were in my head!
The funny thing is that I know a girl that had a 10 day trial...that's why I was really surprised when my doctor wanted to only give me 3. And she was just fine...no infection or ill effects. So what is the truth about how long you can go? I have no bloody idea!
My doc says he uses a 2 week trial so that people can really experience how its going to effect them (or not). But, I'm thinking the stank of me might scare my hubby away by then!
On a side note, I love the flower pic! If only my plants could bloom year round...maybe I should build a greenhouse this weekend...small project : )
It's so funny now, my stimulator trial was supposed to be 7 days. At day 4 I started a fever. I went to the hospital and ended up getting sick as hell.
I had a headache so bad that I had shots of fentanyl every 1 hour. I ended up on really strong antibiotics and put ice packs on my head for the pain. There were other trials and tribulations. I was in the hospital for 4 days, threw a doctor out of my room, and christened a bathroom (I will spare you the details, it wasn't pretty).
Still, I went ahead with the permanent SCS. It helped my pain a lot, and even though the trial was a living hell, I could tell it helped. I guess I was just lucky. It's not 100%, I give it a 90% if I am not active and a 75% if I am very active, but at least I can get really good pain control and actually be pain free a good deal of the time.
Now if I could only go hiking again.
I had my trial stimulator implanted on a Monday and was supposed to have it removed the following Monday. My doctor and I both had some questions and doubts so the rep did some major tweaking and I kept it an additional day with outstanding results. Had it not been for the extra day I don't think I would have gone ahead with the permanent one. It took me 3 or 4 days to really feel up to getting out and doing things after the procedure. I don't know how anyone could be expected to make a decision based on such a short trial. As far as bathing during the trial. I put a couple inches of water in the tub, disconnected the battery from the cables, taped the cables further up my back and washed only the front side with some assistance from my husband, especially getting in and out of the bathtub. I'll never forget the wonderful shower after having all that tape and glue gunk ripped off my back!
It seems we all agree that a trial of 3 days is way too short. I absolutely understand that the doctors want to minimize the risk of infection so there must be balance but, like we've all said, the patient needs to get past the pain of the procedure before he or she can actually test out the stimulator.
cm-do you have a trial already scheduled? Keep us updated! And thanks for the compliment on the flower pic. I try not to touch my mom's flowers, as I have a brown thumb and tend to kill anything green.
Oh..about bathing with the temp. stimulator...I was able to shower a bit because we have a detachable shower sprayer thingy (also very helpful for after the perm. surgery ). So DH helped me with that and he also washed my hair in the sink. So, cm, if you do have a long trial..there are ways to minimize your stink! seernisse is right though..it felt so good to get that itchy paper tape off my back and to wash off that sickly-smelling iodine solution!
rs-you had quite a rough go at it! Did you have a headache because of a spinal fluid leak?? Also, if you are ever inclined to share the details of how you christened the bathroom..I am all ears. Nothing is too shameful for this blog.
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I wish I read your blog before I did my trial because mine was a 3 day trial. I've read & heard it was only gonna feel like I had a bruise on my back, so told DH to go on his business trip & I'd be fine; YEAH RIGHT!!! What a horrible experience. 1st the procedure was so painful, they keep giving me more meds but it still was VERY painful. After when the rep was trying to program, we figured out my epidural space was big which cased the leads to move away from the spine which changed the strength of the stimulator. I couldnt sit back due to the pain so it was hard for her to program. I moved & it threw off the chair, the shock I got. The leads moved closer to the spine which gave me a the full strength. OMG, I thought I was gonna die, the tears streamed down my face & I'm not a cryer. Needless to say, the trial was difficult since everytime I moved, the strength changed dramatically & at times, didnt feel it at all. Plus the pain, I couldnt move or function for the 3 days.. Not a pleasant experience & I can say, DH WILL be home during the permanent procedure. Thank you for this blog, great to know what to REALLY expect.
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