Revision Complete

I know it's been a week since my surgery but I haven't felt like rehashing the experience. It was not pleasant. However, my stimulator was fixed and in the end that's all that matters. The battery pack had tipped forward which made it stop working. My surgeon made a new pouch, put the battery pack upright and stitched me back up. My Medtronics rep was out of town, so I did not know the rep who was there that day. Unfortunately he did not reprogram my stimulator after surgery, so I'm not getting any pain relief. Luckily tomorrow I have an appointment to get my stitches out and my rep is going to meet me there to fix the programming.

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.

Rough Pre-Op, Surgery Tomorrow

Yesterday was my pre-op appointment. I thought my last pre-op was bad, but this one was so much worse. I got there at 2 pm, had my blood drawn and then sat around for 3 hours until I saw a nurse practitioner. At one point I started crying because I was in so much pain and they were making me wait too long. One of the nurses took pity on me and let me move from the waiting room to a private room, gave me some ice and apologized profusely. The nurse practitioner finally came in, hours after my appointment, and was completely useless. I had several questions that she couldn't answer. She kept saying, "Ask Dr. Boggan when you see him the day of the surgery." Not what I needed to hear. Especially since I wanted to know where they plan on placing my battery pack, are the wires going to be lengthened so that it's not so tight in my neck, etc. She also told me that I won't get IV pain medications, even though I will be in a lot of pain. That upset me. I didn't ask for this surgery. If it was done right the first time, I won't have to go back in. I'm not an addict trying to get a fix. I'm a woman who has been in pain for over 1,300 days and I would much rather not have to hurt any more. I really don't think that's too much to ask. It makes me wonder, when did this "professional", who has worked in neurosurgery for years, lose her compassion? I've sure that my doctor, who I truly respect, will make sure I am as comfortable as possible while I'm in the hospital. I just needed some reassurance yesterday.

Tomorrow is my surgery. I like to think of it as a "do-over." I am so tired. Emotionally I am completely drained. Physically, well, I feel like a mess. I am thankful that I get to have a revision quickly and may be able to salvage a little bit of the summer. It's strange to think that tomorrow I'll be able to use my stimulator again. I'm glad the battery is going to be moved, since it's sticking out right now (which I don't think it's supposed to do), yet I'm not sure where they are going to put it next. That makes me nervous. My hope is we get it right this time. And I'm able to recover quickly.  

Revision Confirmed

Today I went in and saw my neurosurgeon to discuss my inevitable revision. It was confirmed that an electrode pulled out of the stimulator which was causing it to cut in and out. Unfortunately the electrode that pulled out is the main one that was giving me the most pain relief. To top it all off, my battery pack also moved and flipped forward, which is why it looks so swollen. Sigh. The wire on the left side of my neck has started to feel tight too. My surgeon put in several "stress loops" so I had slack to move, so he's thinking that it's tight due to the battery pack shifting.

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!

Whispers of Revision

My stimulator is having some serious issues. It's cutting out constantly, and only really works when I'm laying flat on my back. I was having a really bad headache this morning, so I turned it on and it made me twitchy because it was switching on and off while I was walking. It almost felt like it was shocking me because the muscles in my face move when the stimulator first comes on. I suppose I can look at it in a positive light and say my face got a nice workout today.

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.