CRPS and considering an SCS

Hi Pixie,

I also have CRPS and have a neurostimulator, however, I don't know how much I'll be able to help you, seeing as my leads are peripherally located rather than being in my back (my CRPS is in a different location). I don't remember the trial and implant as being a huge deal. However, it is still surgery, which puts you at risk for CRPS spread, and so precautions should be taken as they would for any other surgery done on someone with CRPS. Before I decided on the implant, I mostly wanted to know what my long term limitations would be and how durable the battery unit was.

I will say, don't take the no MRI thing lightly. I've had my stimulator for nearly 8 yrs now, and in the last year alone, I have had to have 4 CT scans with localized contrast injections (including 3 CT/myelograms, which are NOT fun and are not preferable for someone with CRPS again because of the risk of spread). Besides being more invasive and the radiation exposure, a CT scan is also not as good as an MRI for most soft tissue stuff. Also, the no MRI thing might also impact your ability to perform your job, given that you work in anesthesia and likely have to occasionally provide anesthesia services to patients in MRI. If you go ahead with the implant, unless your unit is MRI safe, you will NOT be able to care for patients in MRI, even if your stimulator is turned off. It also does not matter if the machine is actively scanning or not. If the MRI is powered on (which it basically is all the time), you cannot be with 10T of the machine (at least for my Medtronics unit). This means that not only can you not be in the same room as the MR unit, but you also cannot even be in the control room. We have mapped it out where I work, and a 10T field requires quite a large berth... Your job may accommodate you, as mine does, by not giving you MR patients, but it is still a royal pain in the butt (especially if you are on call and get an emergency case that requires anesthesia in MRI but you don't know that until you get to the hospital, and then you have to call someone else in instead, because you can't take the case -- it's happened to me before).

That being said, don't let job restrictions, etc, stop you if the stimulator really helps with your pain. You're not going to know until you try it, but they do help a lot of people (though I would say that you'll find more people here on HW that had issues with their SCS than they did success, but the population here is biased towards people who have failed treatments, seeing as none of us would be here if we were doing great/weren't still in pain). I've had mixed results with mine. It was very helpful for a few years, but is less helpful now. Some of that is because I have better treatment options available to me now than what I did at the time, and I don't need the stimulator as much. And some of it is because the stimulator has become less effective over time, which is probably some combination of my body becoming used to the stimulation, and the stimulation itself weakening as the pulse generator got older (I'm actually currently in need of a new generator as my battery recently died, and I'm hoping the new one will be more powerful).

Other than my stimulator battery dying a year or so before it should, I've had no problems with the technology, itself. I can't give you any advice on the paresthesia free generators vs the more traditional ones where you do not feel the stimulation, as they were not around when I had my trial/implant done. It's also probably a matter of personal preference -- some people like the way the stimulation feels, and some people do not.

The one other thing I would say is to talk to your doctor and rep about any "hidden fees" before hand. I was quite surprised to find after surgery that any time I needed to have my stimulator checked or adjusted (which they recommend doing at least once a year, and more frequently in the beginning or if you are having problems), I was charged literally several thousand dollars by Medtronics, which insurance is often reluctant to pay. And when they do pay, I am still usually responsible for a significant portion of the bill. That being said, I don't know anyone else who has had this problem. I have heard from other patients on the board with Medtronics stimulators that they are not charged for maintanance visits. So I don't know why I am (and yes, it is coming from the stimulator company not my doctor -- my doc does also charge for the visit, but he always writes off whatever insurance does not cover & it is no more expensive than a regular office visit)... I asked my rep about it one time & was just told that it was "standard procedure" to bill the patient. So I can't explain it. But it is something you should be aware of...

Anyways, best of luck if you go ahead with the trial. Don't expect it to be a miracle fix, but hopefully it will help reduce your pain some.

Skeye

Pixie,

They do make "MRI safe" pulse generators and leads now (they weren't around when I got my stim), though you might have to ask specifically for that technology. I don't know a whole lot about the MRI safe stimulators, other than that "MRI safe" doesn't mean 100% safe. There are still restrictions, BUT they might be safe enough to allow you to at least work in the vacinity of the MR with no restrictions, other than having your stimulator set on the appropriate settings for MRI. It is definitely something to talk to your rep about. And if your rep is not knowledgeable enough about that, then ask for the phone number for the technical support folks for whatever brand stimulator you are getting. My rep was no help when it came to my specific MR restrictions, other than knowing that I couldn't have MRI's myself. But as a veterinary student, I work around MRI machines all the time, so I wanted to know EXACTLY what I could and could not do/be exposed to with my stimulator. Once I called and explained my situation, the tech folks at Medtronics were extremely helpful -- they are the ones who told me about not being allowed to be within 10T of the MR, even with my device off, and that the MR was not safe to be around even when "off"/not scanning, etc.

And happy to help! It is a big decision for sure!

Skeye

Oh, and you also might want to talk to your doctor about the difference between a SCS and a dorsal root ganglion (DRG) stimulator and whether or not one is more preferable than the other for your specific case. It is my understanding that they are essentially the same device and mostly just differ in where the leads are located/the nerves that are targeted. The DRG technique is fairly new, however, I have read that it often works better for pain in the lower leg (particularly the foot/ankle) than the traditional SCS, especially when the pain is only located distally (as it sounds like yours is), as you can better target and limit the stimulation to that part of the limb, rather than having to involve the entire leg.

Post Edited (skeye) : 12/14/2017 3:47:13 AM (GMT-7)