Sunday, February 12, 2012

Revision Déjà Vu

This post is hard for me to write. I have to have another revision. It seems my battery has moved again and a wire pulled out, same as last time. I noticed something was off about two weeks ago when it started hitting a nerve and sending tingling through my scalp, then I needed to turn my stimulator way up to get pain relief, and Tuesday it began shorting out depending on my position. I called my neurosurgeon's office Wednesday crying, asking for an appointment. They didn't have anything open until March 8th, so I then begged and they created an opening for me the 16th. I had to get in as soon as possible. I'm in so much pain right now and I can't imagine waiting a month for an appointment and then another month until surgery.

As soon as I got an appointment I started packing my stuff to make the trek to Sacramento. I had to drop out of my law class, postpone my agility training with Dakota, and stop my volunteer work with the public defender's office. All three of these things are equally important to me and it makes me angry I have to put my life on hold again. I am lucky my law class is offered again next semester, my amazing agility trainer is willing to work with Dakota and me when I get back to Reno so we can catch up, and the empathetic staff at the public defender's office recognized that I am dedicated to being there and asked me to come back once I am well again. Sometimes it's humiliating to share my illness with people I barely know because I don't want to look weak. However, I have gotten some great support without judgement which is appreciated.

I have not yet gotten confirmation that I need a revision from Dr. Boggan, but there is no doubt in my mind. My Medtronics rep knows too. I asked her if having this many revisions is normal and she says absolutely not. Having the battery in my stomach just isn't the right place for me and we're going to have to move it. I assume he'll move it to my chest area, which freaked me out back in May but now I just want it to work! I'm going to push for a rechargeable battery since they are smaller than the non-rechargeable and since it will be in my chest I don't want it totally obvious.

My greatest hope is that this is my last revision for a while and I can have it done before my birthday in March. I realize my healing time will be a bit longer than normal since I'll have two incisions that have to heal and because the wire needs to be re-tunneled, I'm going to be very sore. However, the stimulator gives me such great pain relief when it's working properly. Which is why I am willing to go under anesthesia for the fourth time in a year.

Please forgive me if I'm babbling and/or not making a ton of sense. I'm in a lot of pain and I'm so tired.


  1. I'm really sorry you have to go through another revision but I hope you get the battery placement the way you need it this time.

  2. I can't imagine needing to have another revision, but you're a trooper. I'm glad you get the relief that you do, and I hope that this revision will be the last.

    1. Thanks for the words of encouragement girls! My friends haven't been at all supportive because they just don't understand.

      Jamie, you haven't had to have any revisions, right? What's your secret? Have you gotten to a point where you don't need your stimulator any more? And one last question, how do you like having a rechargeable battery? Do you ever forget to charge it?

    2. LOL. I don't have a secret. I really like have the rechargeable battery (in my hip). I've never forgotten to recharge it. It's easy to charge, and I really don't have to charge it that often.

      I haven't gotten as much relief from the stimulator as I did during the trial. My doctor and I are sure why (we've had some added difficulty because I weigh so little, but there's gotta be something else). I'm still having about the same number of migraines, but my "good" days are better than they used to be (which I see as an improvement). I'm not ready to give up on it and get it removed... the surgery and recovery was extremely rough on me (again, doctor isn't sure why).

      I've been switching between using and not using my stimulator. Sometimes, keeping it on for a couple weeks, and then turning it off for a week or so, helps. I just haven't found a good way to manage yet.

      My doctor has offered to do a revision surgery - to either move the leads or remove the stimulator all together. There's some looped wire above my right ear, and wearing my glasses (which I always do) can be painful... so, the revision would be to move that a little, and then move the forehead wires ("while they're in there") to try to get more relief. One of the main reasons I haven't done anything yet is because I'm the matron of honor in my sister's June wedding. I've finally grown back most of my hair (my surgery was Dec 2010), so I told him it'd definitely have to be after that... may sound silly, but oh well.