Thursday, June 30, 2011
I'm sorry if I seem pessimistic. This has all just been so hard. I am beyond frustrated. My mom is trying to remind me that my headache will be gone soon, but it feels like forever away. At least my stomach looks way better than the last surgery, plus it doesn't hurt as much either. If all goes as planned I'll be able to go back to Nevada next week and start my life again, which is both scary and incredibly exciting.
Tuesday, June 21, 2011
Sunday, June 19, 2011
Occipital nerve stimulator systems: Review of complications and surgical techniques
I encourage everyone to take an active role in their own health care and not be afraid to discuss exactly how the surgeon will implant the Occipital Nerve Stimulator. Neurosurgeons do not have the best bedside manner, but never feel bullied into being silent. Good questions to ask are: How often do you see the need for a revision? When do these revisions usually occur? Have you found better success putting the battery pack in the chest or abdomen? How many incisions will be made? What are my restrictions while healing? How many stress loops will you put in? Do you prefer rechargeable or non-rechargeable batteries? (I have a non-rechargeable battery. While rechargeable have a longer life, about 10 years vs the 6 years mine will last, my doctor has found that many people don't take the time to charge it and kill the battery quickly). These are all things I did not know to ask my doctor and I'm learning as I go.
While it is tempting, it might be best to refrain from asking the likelihood of the stimulator taking away your pain. He/She will most likely say 50/50. This is far from comforting and not necessarily true depending on the type of headaches you have. For example, one study has found 75% of Hemicrania Continua patients receive over 60% pain relief. My Medtronics rep has installed 5 stimulators in HC sufferers and 100% of us found 80%+ help. Yet this is not something my doctor would share with me, for whatever reason.
Thursday, June 9, 2011
I talked to Dr. Boggan about why this happened. He was very tactful with how he said it, but basically it's because I have a very "ample" stomach and it was harder to anchor it down. He couldn't put it under all of my fat since then my remote wouldn't be able to communicate with the stimulator. I don't think I could have felt any worse at that news. I know that I'm heavy, that's not a surprise. I have never really been skinny, but I gained a lot of weight when I got sick. As anyone with migraines can attest to, exercising while in pain does not go well. I have been so hard on myself these last few years because this is not where I want to be physically and it just kills me that this surgery wasn't successful due to my belly.
My mom said I shouldn't beat myself up over this. And she's right. I'm sure I'm not the first heavy person my surgeon has done the ONS surgery on. He didn't focus on this being my fault, at all. It's just so difficult to hear, and easy to obsess about. I wanted to be well on my way to full recovery at this point and it makes me so sad I'm not there. I look forward to getting back to Nevada feeling better than I have in years.
The plan: revision surgery in 2-3 weeks (end of June or beginning of July). My surgeon is going to take the battery pack/stimulator out and move it to another area. He's thinking more to the left towards my back, but we're going to discuss that further. Perhaps I'll talk to him about putting it in my upper chest. I know that he doesn't want it there, however under these circumstances maybe he'll relent. Truth be told, I don't want it there, especially since now I already have a scar on my stomach, but I'm at the point where it won't matter as long as it works. I am anticipating this surgery to be more painful than the last because they will have to re-tunnel the wires, make more incisions, and re-anchor everything. Bring it on!
Sunday, June 5, 2011
Wednesday, June 1, 2011
I called my Medtronics rep last night and told her what I'm experiencing. I warned her last week at my neurosurgery follow-up that it didn't feel right and she said it might be from the swelling. But when I talked to her yesterday she was certain that I need a revision. I knew that the likelihood of revision with ONS surgery is close to 100%, but I just didn't expect needing it so quickly. I'm not even 3 weeks post-op! According to my rep, I have to wait at least another week before another surgery, but it will most likely be longer since my surgeon is so busy. I called his office today (twice) to figure out if I should stop using the stimulator, if I definitely need a revision, etc, but he wasn't there and I couldn't seem to get any answers.
I'm feeling really down. My pain is bad again and I was hoping I wouldn't need a pain killer refill, but now I will. It makes me cry when I think about it. I suppose that's because being off pain killers is my ultimate goal- the whole reason I did this surgery. And now I'm not where I thought I would be at this point in my recovery. I keep wondering, "If I'm having so many problems in the first month, does that mean I am destined to have nothing but issues with this thing?" I know it will all work out in the end, and I will be happy when I'm pain free again, yet I just feel so drained trying to deal with it now.