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.  

An article to read on ONS complications/Questions to ask your doctor

As you can tell from my blog, nerve stimulation isn't an exact science and there can be many complications. Trying to sort through all the studies is overwhelming and frightening. It seems as if nothing is written for the patient and certainly doesn't go into detail about possible complications. Therefore,  I would recommend reading this article if you are considering Occipital Nerve Stimulation. It isn't aimed at the layperson, but it's not too difficult to understand. Another thing to keep in mind is they started the study 5 years ago and medical technology has come a long way. For example, I have 2 stress loops so that my leads have some give and shouldn't migrate (this was not a common practice in the past).

Occipital nerve stimulator systems: Review of complications and surgical techniques
http://jdc.jefferson.edu/neurosurgeryfp/6/

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.

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!

Even More Pictures

Here are some more pictures of my stomach incision and how it's healing at 3 weeks post surgery. (Infection is gone thanks to the steri-strips)

 The swelling has gone down quite a bit, but it still sticks out a little.

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.