My experience with a Spinal Cord Stimulator

Hello everyone,

I am a 29 year old chronic pain patient with a recently implanted neurostimulator for chronic back and leg pain. Before I had my surgery, I had many questions and had to look on message boards for answers. If anyone has any questions for me, please feel free to ask.

-Danimal

PS- I also have a diary about my experience with my surgery and post-op that you are welcome to read. It's called Chronic Stimulation. I'm not sure if I'm allowed to post the site here? I read the forum rules and it seems that it is ok to post personal websites in your signature. If this is not allowed, administrator, I understand and apologize..I wasn't sure who to ask (your link for the submissions query does not work, by the way).

http://chronicstimulation.blogspot.com/

Hi Scarred:

Thanks for checking out my blog and I'm very happy that it may be of some help to you. I think I will add an FAQ section as I'm sure other readers may benefit from these types of questions...

As for where to put the stimulator..I went back and forth about it but ultimately decided to do the abdomen. Three reasons for this were: 1)I am also thin, 2) because I've had so many back surgeries and have a lot of scar tissue back there, I was worried about it causing more pain in my back side and 3) I didn't want to worry about not being able to sit for weeks and possibly months without pain from the battery site.

I am very, very happy with my decision. In terms of being thin..I am 5'8'' and about 118-120 lbs. I have very little meat on my back, where they normally put the implant. My abdomen has more meat on it and it was much easier for the surgeon to make a pocket there. My friend has one on her backside/buttock and she said she couldn't wear underwear for months and that it was very very uncomfortable to sit down for a long time. My abdominal site is still very tender to the touch and I had my surgery almost 2 months ago so I can't imagine what it would be like in my butt. It's also easier, imo, to have it in your abdomen because you don't have to reach around with the antenna to turn it on and off..you simply look down and put the antenna up against your tummy.

As for the re-chargeable option..I'm very happy I went that route. Some people aren't keen on the idea of charging every few days or every night (depending on how much you use the stimulator). To me, it's really not a big deal. As you can see from my blog, they give you all the equipment in a case that's easy to carry. everything is easy to use and you can do it wirelessly when the charger itself is all charged up. Most people sit on the couch or are at home relaxing at night so it's pretty easy to find the time to do it. Of course, it is more of a commitment than the non-rechargeable but I wasn't keen on the idea of getting opened up every year to replace the battery. If you use the stim. a lot, it's entirely possible that you could be looking at that. I'm hoping to get pregnant sometime in 2009 so I didn't want to take that chance.

As for the hospital stay..that depends on whether you go with a surgical lead or a percutaneous lead. The surgical leads are stiffer and have a paddle on the end of them. This surgery can only be done by a neuro. and you have to have a laminotomy for lead placement. The average hospital stay for this option (according to my medtronic rep) is 2-7 days but she said it is very dependent on the health of the patient before going into the surgery and also how well controlled your pain is while in the hospital. If you are still in need of the morphine pump, they will not send you home (they won't send you home until you are on oral meds). The percutaneous leads are more flexible and they can be placed by an anesthesiologist. This surgery can and has been done as an outpatient procedure..though some doctors prefer an overnight stay. I am very very happy I had a neurosurgeon do mine and am glad I went with the surgical lead option. This is a subject I will be discussing soon on my blog...FYI!!

They did not give me any sedative for the trial procedure- they like to avoid that, if possible, because they want you to be with it when they ask if and where you are feeling any stimulation. However, if you are very nervous about the procedure..they may give you a short acting anti-anxiety med. I was pretty nervous and mentioned it to the doctor and he said if I was really, really nervous, he could prescribe valium but, in the end, I decided not to do that.

What company does your doc. use? Medtronic? St. Jude/ANS??

If you have any other questions, please don't hesitate to ask. Don't hesitate to post questions on my blog..I'll probably see them there earlier if you want a quicker response!

Gentle Hugs!
Danimal

ok..so if you have an anesthesiologist, you would have the percutaneous leads placed and it would not be as involved a surgery as if you had surgical leads placed. I would ask him about the benefits of him doing it vs. a neurosurgeon though. Just something to consider (like I said, I will be blogging about this issue soon). If he is a good doctor, he will gladly discuss the risks and benefits with you and will not at all be insulted. In fact, I think a good doc would even suggest you talk with a neuro, just so you have all your bases covered.

I had my trial done in the doctor's office...it wasn't in a big operating room. It was at the pain mgmt. center..they have smaller operating rooms there with fluoroscopes, etc. So that's prob. what you will have??

To be honest, that cable is pretty sore still but it's more of an uncomfortable pain/bruised/tender pain..so don't fret too much about it (I know, easier said than done!!). It looks worse than it feels. It's not an acute pain. You will be sore but it will not be anything you won't be able to handle, given the fact that you've obviously been in great pain to even get to this point!


Your stimulator buddy,
Danimal

I'm just going to throw this out there for you, Scarred, to save you some time...

You're at the beginning of the SCS process, so you're going to find out really soon that you can't get a straight answer from other SCSers about most of the questions you have asked. It's not that people are trying to be obtuse - it's that it seems like every single doctor has their own very specific way of doing things, and they all seem to be married to their way as the only way.

When I began, the doctor I was seeing told me that it was impossible to do the trial without very heavy sedation and that most of his patients have no memory of the procedure. In fact, his standard protocol involved bringing in a second anesthesiologist just to take care of the sedation aspect, so that he could focus his attention on getting the leads in place properly. He did the trial procedure in a full OR at the hospital and required an overnight stay, with 24 hours of IV antibiotics and a 14-day course of oral antibiotics beginning at discharge. I also think he had a somewhat unnatural attachment to a particular brand of stimulator and he wouldn't even entertain my questions about the things I was researching if it involved a brand-to-brand comparison.

As it happened, I had a somewhat unrelated problem with that doctor before my trial procedure and I ended up switching to a new pain management specialist.

At my first appointment, I recited all the information I already "knew" about the trial and the permanent implant - and he spent most of the time rolling his eyes and chuckling at me. Then he told me everything my previous doctor told me was hovering right between wrong and ludicrous.

about a month later, my trial was done in the procedure suite of my new doctor's clinic. My doctor doesn't use antibiotics before, during, or after the trial procedure. I had absolutely no sedation and only a local anesthetic where my leads went in. It took about 20 minutes for my doctor to wash me down, numb me up, get the leads placed, confirm the coverage, and tape me up. It took about 10 more minutes for my Medtronic rep to set me up with 4 programs to switch between during my 5-day trial and make sure I understood the remote control. When I walked into the lobby after the procedure, my family member/driver thought the procedure had been canceled, because it was so quick and I looked so normal!

For my permanent implant, percutaneous leads weren't an option, so that procedure was done by a neurosurgeon. I have the Medtronic RestoreUltra with a Specify 5-6-5 paddle lead (with that lead, you only get one lead with 16 electrodes on the paddle) and it was implanted at T7/T8 through an open laminectomy. My permanent implant was done outpatient; I was in and out of the hospital in less than 12 hours.

The reason I bring it up is not to hijack the thread, but to point out that all of these doctors have their own version of what's reality and what's hovering between wrong and ludicrous. Make sure you ask your doctor every question that comes into your head, so you can find out what protocol he's married to and which stimulator company he has an unnatural attachment to.

Post Edited (BionicWoman) : 3/11/2009 1:12:39 AM (GMT-6)

Hi Bionic Woman & Scarred:

Bionic..no worries about hijacking the thread. I'm sure Scarred is happy for any feedback. And you are so right..it is extremely difficult for a patient who is considering this surgery to get straight answers from other patients, as people's experiences do vary quite significantly from doctor to doctor (and also country to country. I have a friend over seas who had a very different experience..he got to have his perm. implant days after his trial implant..whereas I had to wait weeks for things to heal, according to my doctor).

So, yes, Scarred, it will be important for you to ask your doctor these questions!

As for the percutaneous leads vs. the surgical leads...

The percutaneous leads are thinner/smaller and are placed percutaneously (as they do in the trial). Surgical leads, on the other hand, are thicker and they have a different shape to them which apparently makes the stimulation more efficient and specific. These leads have paddles on the end of them and require a laminotomy for placement (Bionic..how come you had to have a laminectomy instead of a laminotomy?). In other words, you will have a bigger incision if you go with the surgical leads and the neuro. will have to cut away part of your lamina, which is part of your vertebrae). A neurosurgeon has to do this, as anesthesiologists are not trained nor certified to place surgical leads. Studies show that surgical leads are less prone to lead mirgation, though you have to consider that the surgery is more involved.

I had both of my trials done by an anesthesiologist and was set on the path of the percutaneous lead placement. However, after talking with a number of other patients and discussing it with my Medtronic Rep., I decided that I wanted to meet with a neurosurgeon to discuss the option of surgical lead placement instead. I felt much more comfortable with the neurosurgeon and, because I want to get pregnant, it was suggested that the surgical leads would be more appropriate (as they are less prone to migration). He also explained to me that, with the surgical paddle, the paddle is positioned right over the nerve whereas the perc. leads are positioned kind of next to the nerve. So the stimulation with the surgical leads is more direct.

I was very happy with my decision to go with a neuro. and to do the surgical leads. Like Bionic, I have a Medtronic RestoreUltra, also with the Specify 39565 lead (it is 16 electrodes which means there are about half a million permutations in terms of stimulation programs for you and your rep to try). Mine were placed at T9-T10 (I think you prob. saw on my blog where that translates in terms of an incision).

Which way to go depends on you as a patient. You have to weigh everything..including the fact that surgical lead placement is a bigger surgery and most often requires a hospital stay (though, again, I guess that would depend on the doctor's preference. I left the hospital on the 4th day).

Is your trial scheduled yet??

Danimal
http://chronicstimulation.blogspot.com/

Hi Scarred:

I'd be surprised if you don't make it past the psych. part. The reason they do that is because some patients have a really hard time with the implant in their body. Some patients have even cut the battery out themselves...eek! So the insurance companies want to make sure you aren't going to change your mind after the surgery and want it out, which would cost them more $$.

You know, I was actually surprised that they put the leads in at T9-T10! My pain is from l1-s1 and my previous surgeries were on l3-4 and l4-5! They did the trial at l2-3 (I was very very nervous about them putting the epidural in at l3-4 or l4-5 so they did it up one level). Anyway, I remember after the surgery, I went to look at my incision and was surprised to see it up so high! But I think he decided to do it there because I had so much scar tissue down below.

I'll be thinking about you as you make it through the rest of the week and call early next week. I know the waiting is hard!

Hugs 2 you too,
Danimal
Chronic Stimulation
http://chronicstimulation.blogspot.com/