Spinal Cord Stimulator Trial

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abdpain49yrs
New Member


Date Joined Apr 2012
Total Posts : 10
   Posted 6/26/2012 1:13 PM (GMT -6)   
I've posted on here before...it's been awhile ago. I am 28 years old and have had chronic lower right abdomen and lower back problems for the last 8, almost 9, years. I just got done with my spinal cord stimulator trial. I had it for a week and the whole week I was on the fence as to whether it was helping or not because I still had pain and it was enough pain that I was stilll taking some pain medication, although it was significantly less than normal. But now I'm going on the second day after having it taken out and it definately helped more than I even realized. Even if I still have to take some pain medication I for sure felt better than I do now! Which is huge for me because nothing has ever worked, even slightly before!

My pain management doctor led me to believe that this stimulator to be considered effective I should not have to take ANY pain medicine and so I think I had unreal expectations going into it. So I was wondering if anyone on here had a spinal cord stimulator or at least went through the trials and what were the outcomes. Are there people that have a stimulator that still have to have some kind of pain medication or am I just trying to talk myself into something that may have only slightly helped? ANY input is GREATLY appreciated! :)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16301
   Posted 6/26/2012 4:20 PM (GMT -6)   
Hello and welcome to the chronic pain forum. Everyone that has had these units always require medication for break through pain. I have yet to see one person ever be medication free. If your PM dr is telling you that you will not need meds then I would make sure if I went through with the implant that he will continue to give medication. If he says no meds then I would run as fast as I could from that office. Even the rep from the company will tell you this. It can be real easy for us to fall into a trap when it comes to medication because we all would love to be medication free. If you will use the search feature here at the forum at the top, type in SCS units you will find lots of info there to read from members.

I have to agree with you that you had unrealistic expectations with the trial. I have a pain pump and I still have to take meds for BT pain. Its just a way of life. I urge you to really look into these units before making a decision to have one implanted.

Keep us posted o how you are doing. Take care...Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 6/26/2012 8:36 PM (GMT -6)   
Hi and welcome.

I would agree with Susie, that you may have had some unrealistic expectations going into your trial. Did you have a psych evaluation prior to the trial? I didn't, I'm not entirely sure why actually, as it seems to be a pretty standard thing - in part to make sure that expectations ARE realistic.

I'd definitely have a good talk to your doctor as not having to take ANY medication is usually not the guideline for a successful trial. Usually it's given as around 50-70% reduction in pain relief - maybe your doctor considers this sufficient to be medication free?

One thing to consider - is that because your trial leads have been removed there is a chance that if you decide to go ahead with a permanent implant, you will not experience the same stimulation or pain relief as during the trial. When I had my trial, the doctor who did mine suggested doing the trial with permanent percutaneous leads - i.e., surgically implanting the leads even for the trial. Although this is more invasive, it gives a more realistic picture of what the permanent stim will feel like - and if you go ahead with the permanent one as I did, there is no changing over of leads and no potential for that loss of pain relief. Even a change in lead position of 1-2mm can create a completely different pattern and can make the difference between good relief and no relief. My personal opinion is that this is one reason why some people have good relief with trials and then have no relief once they have the permanent implant done. Your body will also adapt to the sensations in time - and I suspect that for almost everyone there is some degree of placebo effect too - so it may well be that the pain relief you get will be less after a few months.

You also need to be very, very honest with yourself about just how much pain relief you were getting. You said you were able to decrease your meds, which is great. Within the restrictions imposed by the trial - were you able to increase your activity levels? Also - what do you do with yourself? Although the most critical period is the first three months or so after surgery when your unit and leads are healing in place, the SCS does not like repetitive bending or twisting movements as this can damage the leads and cause them to migrate - making more surgery necessary.

Okay - now my experiences.

I had my first SCS implanted in 2006 for Complex Regional Pain Syndrome (CRPS - a very painful neuro disease) in my right leg). The 'success' of the trial was hard to judge in the typical way for me... obviously pain's a pretty subjective thing anyway, but CRPS pain has lots of different elements to it. On one hand - my trial should have been a fail, because it did almost nothing at all for the deep, crushing/burning bone pain that I get. Where it was a winner for me was that CRPS causes something called allodynia - extreme hypersensitivity to touch. I couldn't wear a sock or shoe, had my pants rolled to my upper thigh. The SCS trial gave me near-total relief from that and within a few weeks of my permanent implant I was wearing jeans, boots and walking with crutches.

In 2008 the disease spread to my left leg. I had the SCS battery replaced because my original unit could only accommodate one lead, and had a second lead implanted. That's where all my fun started - I was vomiting badly (I've got GI issues as well) and I shifted the new lead within a week or so of surgery. It ended up kinked and my doctor couldn't work it back into place, so he had to remove it entirely and replace it a few months later. Sometime down the track - can't remember now how long - I started getting severe back pain whenever I turned the SCS on. My tech worked out that the lead had moved again, had worked its way out of the epidural space and was stimulating all the surrounding tissues instead. So May last year I had that lead removed and replaced with a small paddle lead - placed in the same way as the percutaneous leads (no bone removal). I had big problems with the surgery - it wasn't done by my PM, but another doctor, and it was a nightmare. I felt everything because he didn't use enough local, and the lead was almost too big for my spinal canal so I had trouble with pain, numbness and weakness in my left leg for months after surgery. Because my back had been opened so many times, it also took months to heal.

Occasionally people will be pain free with a stimulator, but this is far from the norm. What the stim is intended to do is alter sensations - it does cause some masking of pain signals as well, but it's almost never going to provide total pain relief. I'm still using a LOT of meds - more now than ever in fact. Though this is partly because I can't use my stim properly (only for 5-10 minutes at the time) after breaking my back last year - and the damaged area is causing pain that is exacerbated by the SCS. I'm on my upper range of meds at the moment because of a minor car accident a couple of weeks ago, but my normal meds are from 60-90mg Oxycontin, 7.5-15 Meloxicam, 225mg Topiramate (for neuropathic pain), 20-40mg Oxycodone IR (+ paracetamol if I use it), 4mg Lorazepam when I need it (nausea, muscle relaxant) and I also have a pump with Baclofen & Bupivacaine.

I hope that helps - please ask any questions you'd like - and don't be scared off by my experiences. Despite those, I still wouldn't be without it. I've also got severe radiating leg pain from lower back issues, and the SCS is the ONLY thing that helps with that pain. It's only a recent thing - the last year or so - so not relevant to my pain - but when I can have the stim on I get maybe 90% relief from the back-related leg pain.

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

abdpain49yrs
New Member


Date Joined Apr 2012
Total Posts : 10
   Posted 6/27/2012 9:11 AM (GMT -6)   
My experience with the trial was it created a distraction so that if I sat down I was able to relax and sometimes get through the pain without taking a pain med. I will say the stimulator helped with my lower back pain tremendously. One of the reasons I was never really sure if it was working was simply because they tell you not to lift anything over 10lbs, not to bend, and not to twist.....well I have a 2 year old and my daily life requires all of those things tons of times throughout the day. So I found myself sitting more....not because I was hurting all the time but because I didn't know what else I could be doing. I made myself go for walks and do the chores that I could. The whole week that I had the trial I think I only turned it off two or three times. I even had it on at night! I definately felt like doing more. Now that the stimulator is gone I've had a day where I couldn't even move off the couch again and I couldn't stand up straight.

A pain management doc is who placed the trail. After talking with the rep she said that she thought it was successful judging by what I said and she told me herself that she doubted I would be completely off pain meds. But that is completely opposite to what my PM and his nurses have told me. I did go ahead and make another appointment with the PM and I'm gonna talk more about it with him. I might even go for a second opinion and just see what another PM might think.

Where I live there is only one PM in this town and that's who I see so if I end up deciding he's not the one for me, then I have to drive anywhere from 100-200 more miles to the next guy. But I don't want to fall into a trap either and have someone implant the stimulator and then cut off my meds because I would be fit to be tied!

Are the percutaneous leads less stable than the paddles?

Yesterday I was looking the SCS up on here and almost every post has something bad to say about it! Which is really scarey. But I always think it's nice to know both sides and educate yourself so you can prepare for the worst case senario.

Thanks for your comments. I wanted to know the good, bad, and in between experiences. Laura, I was also wondering how well you like your pain pump. My PM and I talked about trying a trial for one of those as well. But I would rather go the SCS route if I could because I'm only 28 and I would like to have another baby someday if I can get off some of these meds. Thanks again you guys for your imput! I really do appreciate knowing that there are other people in the world that feel like me and are NOT just trying to get high on pain meds!!!!!!!!!!!!

Have a wonderful day!

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 6/27/2012 10:33 AM (GMT -6)   
Okay,

Well what I'd say is that this forum creates something of a negative impression that perhaps is not entirely correct. I'm on a few CRPS chat groups - on Facebook and the like - where there are quite a few of us with stimulators, and although some people still have problems with theirs, the overall view of them is a lot more positive.

I think there are a few reasons for this.

The way the trial is done - as I said, there can be small differences between trial stimulation and the permanent implant. If the permanent implant requires bone removal for insertion of a paddle lead, there is the potential for damage and tissue irritation. I mean - I broke my back last year and it's completely altered the dynamics of my SCS.

I think also that some people may be so desperate for pain relief that they may not be entirely honest with themselves - or with their doctors - about how much relief they are really getting from the trial.

The percutaneous leads are less stable than the paddles - but they are also FAR less invasive to implant. Paddles usually require removal of bone, whereas percutaneous - although they still need a big incision (mine is probably just over 4" long) but it is inserted with a big needle type thing instead.
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump
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