RetiredMom - questions, thoughts about your stim

Hi,

I'm so sorry I missed this thread. I swear I wasn't trying to be rude. I've thought a lot about you since I has the stim put in because you have really been ther for me.

To honestly answer your questions.....you know I started off with a rocky start because of the intense swelling. They feel the swelling needs as much as six weeks or more to go down completely and that my coverage will get even better then.

Right now I can honestly say that the coverage is much better than I ever expected it to be. I have full coverage from the lower back to the feet. It feels like a massage from the inside. I am having only one problem with mine right now, but they think it is due to swelling....I'm less convinced because I had the same thing with the trial.... I am having stimulation in the left side under my rib that can be quite painful at times. I don't have very many programs to use right now because they want you to get used to the unit before they add more than four. Don't get me wrong, all four work well and all have different sensations. I tend to like 1 the best.

As far as charging (yes I have the St Jude's), I am supposed to charge every week (or more) as I need it. They said the particular battery type I have does better and lasts much longer if you charge very often...so I charge ever three or four days. It only takes about 10-15 minutes ever, so it's really no big deal forme. They asked me where I wanted my battery and I told them on my left side so that I could reach the area easily to change settings. I don't know if you change your settings through the same battery area or not, but mine does everything through there. Anyway, I just use a pillow and prop the charging disc on the correct spot while I sit in the recliner and use the computer or watch tv. It's no inconvenience at all. I do find that I can't sit in an all metal chair or it will shock the fire out of me...lol. I did that at a little mom and pop shop here in town where they have the old coke table and chairs. Wow!!!!

I also keep mine on 24/7. It helps so much that I can't stand to turn It off. I'm even starting to notice that I feel different on my meds,so I hope to be able to drop them down slowly. I had talked to the PM about doing just that and checking in with the data at my three month apt, but, as you know...I will be going in tomorrow for the med check, so who knows now what is going to happen. My personal goal is to fine tune the stim to the point that I can minimize or eliminate all schedule II meds and stick with the ones that help for fibro. We'll see....I'll need more control over the stim to do that and they are going to give control in stages. It makes good sense to me.

Could you please give me some info on yours and how it has changed in effectiveness since you had it placed? I hope you are still getting serious relief.

Hi RM,

Okay, I have more time now. I'm really happy to hear how well things are going, and that the coverage is great & all that. I know what you mean about having an unwanted area be stimulated that can be painful or uncomfortable. Some of my programs also stimulate different areas of my face/head, and prevent me from turning up the stim as much as I'd like because those unwanted areas cause problems. But it is what it is, and all in all I'll take what I've got.

I have 7 or 8 different programs to choose from, but I too find that I tend to stick with a few favorites. I'll actually go weeks to months on one program before I change it, just because I feel like that program is giving me the best coverage at that time. When I feel like the stim isn't helping as much, or the pain changes, I'll switch to a different program. I'd probably play around with my programs more, but my eye is very sensitive in that higher intensities cause my eye to twitch like crazy & some programs are worse than others -- especially in that some programs I don't get any relief unless the intensity is turned up and my eye is twitching. I try my very best to not let that happen in public as it creeps people out & it is also very annoying to me.

I'm surprised how fast your unit charges, although I suppose it also has something to do with how depleted your battery is when you charge & how good the connection is between the battery & the charger. My reps also said that frequent charging helps prolong the overall battery life. I guess if you go too long without charging & using the stimulator (weeks to months) you run the risk of having to have it "jump started" & they can only do that once in the life of the battery. This has never been a problem for me either, as I also generally use my unit 24/7. I think the longest I've gone with it off was 24 hrs. I like to charge when the battery is 1/2 - 3/4 depleted. It usually takes me 3-6 hrs, and up to 8 if the battery is totally depleted -- that's why I like to charge late at night/while I sleep.

My unit, a Medtronic Restore Ultra, is also controlled completely through the battery, such that both charging & adjusting the settings takes place by placing a paddle over the battery, and the paddle is connected to a remote. I think it generally works the same way no matter what brand your stimulator is. As I mentioned, my battery is in my chest, about an inch under my collar bone, but that is because my leads are in my face. That way they could just run the wires behind my ear & down my neck to connect to the battery. I think it is commonplace to have the battery in your chest if you have leads going to your head.

As for my experience with the stimulator over the last 2 1/2 yrs: Let me first say that it still does help, and if I had to do it over again, I'd still choose to have it implanted in an instant. However, for me, the effectiveness has decreased over time. From what I've heard this is not entirely uncommon. It's almost like the body gets "used to" the stimulation, such that it can almost block it out (similar to how if you wear a watch for the first time you constantly feel it on your wrist, but after several days, you no longer notice that it is there). Turning the unit off for a few hrs here and there can help, or playing with the settings, but overall the relief I get now isn't as great as it was when the unit was first implanted. Don't let this scare you, though. This kind of adaptation doesn't happen to everyone, and I don't think the relief that I got was ever as good as what you are getting, even in the beginning. Yes, it made/makes the biggest difference of anything I'd tried, but my relief varied from the start. My relief also varies depending on my activities/usage of the eye/stress/sleep, etc.

As for meds, for a while I was on less meds, but recently we've had to increase them, such that I am now taking them more frequently & at a higher dose than I was prior to my implant -- I now take pain meds every night, whereas before I surgery it was more like every other night to every night, and after the implant, at times I could go as long as 5 days or so without needing any BT meds. However, I'm still not on as much medication overall as I was at one point prior to the implant, as I had made a personal decision to drop down from round-the-clock meds to meds only at night several months prior to my surgery, as I felt that the side effects & complications just weren't worth the relief that I was getting. I hope that you are able to reduce your meds, but I know many people who do not, or who, like me, end up on more medication in the long term, but are still quite happy with their stim. Don't let your docs tell you that just because you have a stim now, you should not be on any medication. Each case is so different and so personal that it is really hard to compare your stim results to others. Just because one person can get off meds completely, doesn't mean that everyone can or should.

Anyways, I've got to run now to make an appointment. I hope what i've said helps. If I've left anything out let me know! As I think you know, I'm more than happy to share my experiences & help in any way that I can! And I know I've said it a million times, but I am so happy that you are doing well and getting relief!

Skeye

That's silly. I wonder who knows best, the PM nurse, or the surgeon/stim rep...

As for my charging times, I think that my times might be longer than most. Maybe it is because my battery is in my chest, but either way, it doesn't bother me, because I can charge overnight while I sleep. I suppose I could charge more frequently & potentially lower the time needed, but I charge every 3 - 4 days or so as it is.

From my understanding, when it comes time to replace my battery, it is fairly "simple." They only need to remove the old battery, and put in a new one. All the wires stay in place unless there is a problem & they need to be replaced themselves, or adjusted. Even if Medtronic comes out with a new system, I'm not planning on replacing my battery until it dies. With any luck, that will be another 8 - 10 yrs + from now! I do need to speak to my rep about potential reprograming for better coverage, though. I'm hoping that maybe we can find some new settings/programs that will provide more relief, but that will be tough since we don't have much leeway. Unfortunately, though, I have neither the time or the money right now, so I'll have to get by with what I have until the summer. It's not ideal, but I keep reminding myself that it could be much worse!

Skeye

I get charged about $3000 per re-programing/check-up with the rep, which is insane. Even if I have met my deductible (which I obviously haven't yet for 2013), insurance still doesn't pay much. Most of it becomes an out-of-pocket expense, so we can't afford anything more than once a year. It is ridiculous. I really don't understand it myself, but it is what it is. My reps are great, though. It's not their fault that their company charges big bucks, and that my insurance doesn't pay much. I'm not entirely sure when I started getting charged for seeing the reps -- whether it was right after surgery, or months later, as my parents are the ones who handle the bills. My neurosurgeon is beyond wonderful, though. He fought very hard for me for a very long time just to get my stim trial & implant approved by insurance. Then after we finally got it approved, he wrote off all of his surgical fees, and continues to write off all of my office visits several years later.

Skeye

Interesting. I'll definitely have to look into it. The charges never really made a whole lot of sense to us, but a lot of medical charges don't. The insane pricing is just the way that they have to work to try to fool the insurance companies into paying (unfortunately the self-pay patients get caught in the middle of this little insurance/provider war). I'm not sure we ever really looked into it (my mom is the one who handles the bills right now, as I'm still on my parents' insurance plan). I've seen 2 reps & been billed by both -- my main one, and then his partner (the other Medtronics rep who regularly works with patients of my neurosurgeon) when he has been away or unavailable. My father is a physician, but he is just a GP, so he doesn't know a whole lot of specifics about the neurostimulator devices themselves.

I'm not so worried about the charging time myself. It has been that way since day 1, and neither of the reps that I work with have seemed concerned in any way. I believe I've been told that it is a little longer than most of their SCS patients, but it doesn't bother me. I've never had any problems with the unit, so I'm not planning on doing anything about it right now. The last thing I want is another surgery, if it were to come down to having to have it replaced. Unless the unit stops functioning, or has some major problem, I think I'll just let it be.

I know that I can be referred to a rep somewhere up near school if need be. I don't know if there is anyone right around that area, but I have no doubt that Medtronics would hook me up with someone. It would actually be the same state, though. My neurosurgeon is not in my home state, but rather across the border of a neighboring state. That state also happens to be the state that I go to school in, although my school is at the opposite end of the state, a good 5 hrs away from the neurosurgeon.

Thanks for the feedback, I do appreciate it. I will definitely look into this whole matter, but with the big move coming in 2 days, and school starting up a couple days later, it's going to be low priority for a while. But I really do appreciate your help!

Skeye