About Me

My photo
I am a 24 year old woman who has been battling chronic back and neck pain for the past six years. I am writing this blog to help others and to educate others about Peripheral Nerve Field Stimulation (PNFS) which is a new application for Neuromodulation technology that treats pain. My trial PNFS implant is scheduled for Monday, July 6th, 2009 and the final surgery is scheduled for Tuesday, July 21st, 2009. I will be documenting my journey through the process. _____________________________________

Tuesday, July 7, 2009

Peripheral Nerve Stimulation Trial

So I received my trial implant today. Not sure if I'm ready to make a full out post yet, but I will edit and add details when feeling better. I am going to start by giving you a brief summary of the events of the day.

After checking in I went back to my surgery suite and got changed into my gown, etc. I first met with the nurse who took all my vital signs and got me started on IV antibiotics. Next Dr. Hanks came in. His function during the surgery was too keep me calm and focused since I would be awake. I then met with the ANS rep, Jessica, who was very nice and showed me the unit I would be wearing during the trial. After a few minutes with Jessica I met with the Anesthesiologist, Dr. Ku and finally Dr. R. Before wheeling me into the OR Dr. Ku gave me a bit of medication to relax.

After laying on the operating table everyone began to get started. I was still pretty aware of what was going on. Dr. R starting asking me many questions about where it hurt. After marking where I felt my pain he injected some local anesthetic and began the 6 inch journey with a needle up my back on the left side. It hurt like hell. I'm not sure if I did not have enough relax medicine or what but it was not fun. After inserting the lead they turned the stimulator on to ask if I was feeling it in the correct area. I told the Doctor that I did not think it was in the right area and he then proceeded to yell at me for telling him the wrong place in the beginning. Which was super nice considering I was already bawling from all the pain of shoving a giant needle in between my skin and muscles to get it in the wrong place. After that I think they must have given me more relax medicine because the placement of the second lead on the right was totally fine.

After the surgery I was in pain and crying and the nice nurse gave me some morphine in my IV to help out, along with an anti-inflammatory injection in my leg. This really helped and I was able to calm down since the pain was less intense. I then met with my ANS reps who turned the stimulator on and showed me the three different programs I have to choose from.

Ultimately right now I am a bit disappointed. The right shoulder feels fine and I think it is working. The left shoulder on the other hand still hurts like hell. I think they put the lead too shallow and an inch too far to the left... which doesn't mean this will not work. Even if there was bad placement in the trial, they can change things for the permanent as long as you think its working. I'm just worried because I can barely feel the stimulation. I think my mind is more focused on how my left shoulder hurts from being jabbed.

I am hoping for a better day tomorrow.


  1. Hi there! I'm so sorry the trial was so painful! ;( It really stinks, doesn't it? How was the ride home? That was one of the worst parts for me. I'm glad the nurse gave you some morphine in your IV and that it helped. It's difficult to really tell anything about the stimulator the first day or two because of the post-op pain (and I definitely had to take more morphine for break-thru for the first half of the trial). How long will your trial last?

    Well, I just wanted to let you know that I'm thinking about you. Also..if you have any questions, don't hesitate to ask (my stim. is lower down for my lower back and leg pain rather than shoulder upper back and shoulder pain, like yours, but I at least wanted to offer). Or...if you just want to talk or need support...let me know!

    *Gentle hugs*

  2. PS-don't mind my typos..am getting sleepy!

  3. Danimal,

    You are so sweet. Thank you so much for your support. I guess I am just scared right now because i don't have a clear picture as to whether it is working. Can I call my rep and see if they can turn it up? Or can they only do the same things I can with my settings? I am just so worried. I NEED this to work. God please let it work.

  4. I completely understand your fears over this. I know how much you want this to work and how much hope you have riding on this. Just try to take a deep breath and relax as much as you can (I know, easier said than done!) and keep in mind that your body just went through a lot of trauma so your pain is worse right now.

    So are you finding that even at the highest setting within the parameters that your rep. gave you, it isn't enough? I have a medtronic unit..so the measure might be a little different but how high do you have it at right now?

    I would absolutely call your Rep..don't hesitate to do so for a moment. They are there to answer your questions and provide support. She may have given you the same parameters that she can work with but if those aren't adequate..then that is good information for them if you decide to go forward with the perm. implant. Or..who knows..maybe she can tweak it for you during the trial. It's def. worth a call.

    In terms of deciding whether it is working for you...also try to keep in mind that the stims. aren't made to get rid of 100% of our pain (though I wish that they were!). You just have to figure out what % of pain relief is worth it to you to go ahead with the main surgery (I've been meaning to write a post about this on my blog for awhile..so maybe this week I'll address this topic because I know how difficult making the decision is).

    Finally, I found it to be helpful to turn the stimulator off every once in awhile to compare how I was feeling with it on and off. I actually found that it wasn't until I turned it off that I noticed how much I liked having it on.

    Are you able to sleep with the stim. on??

  5. I had a stimulator put in my head (for headaches) last month. Although my trial wasn't particularly painful, as everything is very shallow on me, I had the same panic that maybe the stimulator wasn't working. And my trial was only FOUR DAYS so I was really scared that in that time I wouldn't be able to tell the difference between the surgical pain and the headache pain. But give it a couple days. Usually by the third day you can tell the difference, even if it's just a little.

    Also, when they put in the permanent stimulator, they can always adjust the location of that lead on the left. But I do know some people have more than one trial, if they think they need it. Don't jump into permanent stimulation on the hope that it might work.

    And sadly, as Danimal said, you won't get 100% relief...you'll just (hopefully) get to a more tolerable level.

    Best of luck to you...and check out Danimal's blog, if you haven't already. I think it will help you feel better about the whole process!

  6. Danimal,

    Sorry for the delayed response. I will have my trial for 10 days so that is good. It is good to know that I shouldn't expect immediate relief because of the post-op pain. I have mine set to the highest level possible. For some reason on the left side I can barely feel it at all. I can feel it on the right side just fine and it is more intense on some of the other programs, but the sensation of the other programs is not as soothing. I just think the left lead is out of whack and I'm not going to be able to rely on it. The right shoulder feels awesome though. When you have yours on how intense is the feeling? Do you make it so it is a clear tingling or so you can barely feel it? Just wondering. I spoke to the ANS rep today and she said she can do some major tweaking. She can change the intensity location and much more. So I think I will meet with her tomorrow. I think I will post about that experience tomorrow after I see her. I know what you mean that they are not meant to deal with all the pain. Thanks again for your input.


  7. Banner,

    Thanks for the input as well. I have followed Danimal's blog and it was very helpful. I will give it a few days before I am truely frustrated. A question for you.. So you got your permanant in? The stimulation intensity changes so much like when I am leaning on the couch or laying down or anything. How does that change with the permanant? I know they will sew the wires for the lead into the muscle, but it is not a paddle lead. Do they put it in deeper or something? Thanks.


  8. I wish I could answer that but I think mine is quite different from the back stimulators because everything in mine is very shallow. Nothing goes through muscle at all. My wires are right below my scalp, between the scalp and the skull. Being in my head, it is also an area that doesn't move much so my stimulation level doesn't change much unless I actually put my hand up and press on where the wires are, although when that happens you are right...there is a huge change in intensity. I'm not sure how they control that, or if they do at all. I know mine has little anchors to keep the wire in place, but with the nature of muscles and how they move, I'm not sure they could ever really get rid of that problem. That's a good question for Danimal...

  9. I spoke to my SJM rep today and she told me nothing would really secure the lead any differently, it would just have to scar into place.