Posted 4/3/2015 9:28 AM (GMT 0)
Hi Kim & welcome to HW. I've had a St Jude stim in some form or other (on my 3rd IPG - currently have the Eon Mini) for almost 9 years, though mine is implanted for CRPS pain mainly in my legs.
In addition to what Susie said (personally I can't comment on the experiences she's related - things seem to be done rather differently here in Australia compared with the U.S.) I also would say make sure that you get a decent trial - because the trial unit pretty well creates a direct pathway between the outside world and your spinal cord there is a limit to how long a trial can be safely conducted for, but I would ask to have as long a trial as possible within those limits.
There will be some restrictions on your movement because of the risk of displacing the leads (no twisting, bending, stretching, etc.) but also make sure you are doing as many of your normal daily activities as you can. It's not much good spending your entire trial period stuck in a hospital bed and getting some pain relief, then going ahead with the permanent implant only to find it does nothing for you when you're at home and trying to move as normal (this isn't my experience - but have heard it happening with other, particularly outside Australia). You also need to be really honest with yourself about how much relief the trial is really providing ... there is very often going to be a degree of placebo effect with something like SCS, and while this may be fantastic short term it isn't sustained over longer periods.
When I had my trial (overnight in hosp, 6 days at home), my doctor said that he would not consider a trial successful unless there was at least 70-80% reduction in pain...I will say that I had very little success with it relieving my "deeper" pain (neuropathic, but feels for example like the long bones in my legs have been broken...and do have experience of a good variety of broken bones to make the comparison) but it was close to 100% successful in relieving my allodynia, particularly mechanical allodynia. I can't wear proper shoes as my feet are badly twisted due to dystonia, but before my stim I couldn't wear long pants or socks, couldn't sleep under blankets or even wash without excruciating pain. The efficacy has reduced a little over time - and now need increased med doses to deal with this - but it has made an unbelievable difference to my quality of life.
Given the experiences of some others, I would definitely want to be sure any follow up is covered cost wise. I needed to meet with my rep probably every 2 months or thereabouts for the first few years (in part because of my changing activities, in part because CRPS can be difficult to accommodate with a stim - though is marvelous when it works well). Over the 9 years I've also needed two battery/ipg replacements, and at least 5 or 6 more minor surgeries to correct things like broken or migrated leads.
I didn't find either my trial surgery (done with permanent percutaneous leads) or initial IPG implant overly painful - just took paracetamol for a couple of days after and was fine - but that also doesn't seem to be the normal experience. My biggest lead replacement surgery WAS very painful as it required the doctor to remove an old lead - he had to break down a lot of scar tissue, had difficulty placing the new lead, and I ended up with some nerve root trauma in the process. It is also a surgery that - depending on your doctor - requires you to be awake throughout (otherwise you are woken mid-surgery) as you need to be able to give feedback on what you are feeling while they get the lead into place and try some different stim programs. I have some issues with local anaesthetic (need lots, a long time for it to work, and still isn't as effective as it ought to be) - and I had a doctor who didn't use enough and didn't give it time to work at all before getting to work. I felt everything - and was only my rep who would listen to me saying things weren't right. He was standing at my head and wiping tears from my face as I cried with pain...I've broken arms, legs, my back, been put up fences and thrown across yards by horses and cattle and never shed a tear! I've not really come across too many other stories of this happening - other than with the same dr, who has a reputation for being a bit gung ho - and definitely isnt the norm - but also something to be aware of.
With your past infection - if you've got any sort of implanted materials, I'd also be asking whether there might be any latent infection (as implants can be great at encouraging bugs to form a biofilm) - and whether this poses any increased risk of you getting an infection at your stim site.
If you've any other questions, please feel free to ask :)
Laura