About Me

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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 14, 2009

Nearing The End ... Am I Ready??

So I have a few more days left for my trial. I think the worst part of the trial was definitely the first three days of recovery and being restricted by having the external wires. Otherwise it has been bearable. I am still getting great relief in my right shoulder but my left shoulder still not so much. I feel the stimulation in my left shoulder when I shrug my shoulder up towards my ear. I am not sure what this means, i.e. is the lead too deep, shallow, low, etc. I have made the decision at this point to go through with the surgery and will hope for better outcomes regarding lead placement. I am also going to inquire about adding an additional lead on the left side in between the left shoulder blade and the spine. I am still having some significant pain there as well. I think the possibility of placing an additional lead will be determined by the amount of power I have been using during the trial. The battery can only supply so much power so I am unsure if it will be able to support three leads.

My Biggest Fears ...
So as I am nearing the end of the trial and the permanent is less than a week away my fears about the surgery are becoming more real. The first thing I am really really really worried about is the lead placement. The doctors give you a sedative before you are brought into the OR. Once in the OR Dr. R will be palpitating my back and marking where the leads will go. I am afraid I won't be able to tell him the proper place which really worries me. My second major worry is going through the pain of lead placement again since I now know what it feels like. It is much easier to go into something like that when you don't know how bad it will be. Lastly, I am really concerned about the recovery. I have never been cut open or had staples so that will be a new experience. Also, Dr. must create a tunnel under my skin from my shoulder all the way down to my butt to run the cables. Then he will create a pocket in my upper buttock to implant the battery. Thankfully I will be asleep for the tunneling and the implantation of the battery. The recovery from the tunneling process is a daunting thought. But hey.. you got to do what you got to do right. All I know is that it is going to be much worse than the trial. I have made it this far... I am going all the way.


  1. Yay! I'm glad you have found relief, even if it's not perfect. With better lead placement and the more numerous programs available with the permanent stimulator, I think you will be able to get more relief.

    During my trial, they only put 2 leads in. But we decided I could use a few more and they ended up putting 4 leads in for my permanent stimulator. I suppose it depends on which brand you use but I was told that my stimulator/battery could handle up to 4 leads. So I would imagine that yours could definitely support at least 3.

    I had the same worries as you about lead placement. Apparently my leads were place while I was under conscious sedation. They turned them on, asked me if they felt like they were in the right place, and then put me all the way under to do the tunnelling and battery placement. I don't remember being "conscious" AT ALL. I have no idea what I told them. I have no idea if it was accurate. And unfortunately that is out of your control. You will just have to trust your doctor. But at least you CAN have them adjusted if they aren't right. That's not a very good option as you'd have to undergo another surgery but still, it IS an option instead of just living with misplaced leads.

    I was scared of the pain too but they gave me much stronger pain killers for my permanent than they did for my trial. And if your painkillers aren't good enough, ask for better ones! I did. The ones they initially gave me weren't strong enough. I"m sure your surgery will hurt more than mine, since yours is deeper, but honestly I didn't think the tunnelling hurt very much at all. The worst part was where the leads were in the same place that had just been cut open and whatnot a few weeks earlier during the trial.

    I don't have much advice for recovery, as mine was simple since my incisions were so shallow. But all I can tell you is to think long-term...it will all be worth it in the end!

    Good luck! I'm really enjoying your blog :)

  2. I am in so much pain right now. I am taking 2 hydrocodone 7.5 mg every 3 hours and still cannot lay down or sit against the couch. I am miserable and angry becuase the doctor will not give me any stronger pain medication. It should be illegal to not listen to your patients and help them when they are hurting. It is not right. I cannot even use the bathroom. I do not know what to do.