Going Borg Part 4: Enter the Hivemind

I think I officially have enough drugs out of my system to be able to write a coherent post, so here we go! I guess a good place to start would be the day of surgery.

Tuesday Jan 13th 2015, I officially connected to the hivemind and became a cyborg. I’d known that odds were I was going to be in for surgery this month, and that it would be on short notice, but I’ll admit I was shocked when I got a whole whopping 4 days notice that I was going under the knife. It took some last minute scrambling to get everything covered (much thanks to my awesome partners for picking up for me while I was out). This being my third surgery in under a year, getting checked in and set up felt like routine. This time around however, I feel like I knew less about what was going to happen. In pre-op for my past surgeries I’d met the anesthesiologist who would actually be working on me, but this time around it was someone else just taking notes. No one could really answer my questions like “Will I be awake?” or “How long is the operation?” or even “What’s the recovery time?”. Going in with less knowledge that before was a little less comfortable, but I have a lot of faith in my surgeon, so nerves weren’t an issues (Get it? See what I did there? Because I have nerve damage! *womp womp*).

Sitting the in the hallway outside the OR with only minutes left before going in, you meet your entire OR team. I had a lot of residents this time around, so I got a lot of repeat questions as they practice what to ask. It’s pretty funny to see actually, and I like being able to be a prop in their education process. Even with 2 reps from each of the 3 different divisions coming out to talk to me, I still didn’t know what the plan was until I was on the table. 4 hours of surgery, no I would not be awake, they’re going to put a big tube down my throat, and because I was going to be completely out I was going to have to stay in a bit longer than I had in the past but would still go home that night.

The next thing I knew I was waking up in recovery 4 hours later. It’s a funny thing when you wake up after being completely out. It starts off with a “Wait, where am I?”, followed by a “Right, I had surgery!” quickly turning to “Weee the world is spinning”. Drugs are an wonderful thing. I felt nothing and never would have even guessed I had surgery. I didn’t realize the amazing pony tail they’d put my hair in until shortly before I left. I have an awesome surgeon, but a hairdresser he is not. I was combing it out with my fingers while a nurse was checking out my info when suddenly huge, long chunks of hair starting coming out in my hands. My first reaction (still a little hazy) was “What the hell!?”. The nurse turned to me looking sympathetic asking if hair loss was a part of my treatment. I looked back up to her and said “God I hope not, I’m just in here for a headache!”. She looked really shocked for a second until I laughed and told her it’s likely left over from the extra hair my surgeon probably had to shave off. Sorry nurse lady, that was just too funny to pass up.

So with my new device programmed, and another few hours in recovery I was shipped off and home by 7 where I was met by friends, delicious gluten filled pizza, and movies I could handle with approximately 40% of my usual attention span.

I was too drugged up to fight this

Mom really does love her selfies

Enter the morning after. Now THAT’S where you feel it. The doctors gave me a warning that might happen and had given me drugs for the post op pain and swelling. The side effects there are not very fun, so I ended up asleep for almost 3 days straight.

So after 3 days of fitful sleep and trying to remember to not roll over onto the right side of my head, I was conscious enough to rejoin society in my new technologically evolved form. It’s been tough, slow going for a while, and it wasn’t until today (about 6 days after surgery) that I was really clear headed again. The bandages came off yesterday and I can finally see what was actually done. For the squeamish, you might want to stop here.

I call this one the "Tijuana Boob Job"

I call this one the “Tijuana Boob Job”

Sutures in the front, staples in the back.

Sutures in the front, staples in the back.

This one I think is very Bride of Frankenstein

This one I think is very Bride of Frankenstein

I’ll give a rundown of what you’re seeing here. The slice on my chest is the battery pack they installed. This is a little less deep than I was expecting, so I will have a visible bump there from now on. From there are the wires going up my neck, one to the back of my head, the other to the front. I can actually feel it in my neck when I move my head around, but  I imagine that will be less so with time. The slices along the side and toward the back of my head are from running the wires.

Not seen in these photos is that on my forehead you can actually see the lead. I’ve been told it looks like a big pimple, which I can kind of see. I’m hoping that some of it is still swelling, but I believe it will still be visible even when all the swelling is done. It’s over further than my previous surgeries, which I find is a detriment because the placement doesn’t cover as much of the pain as it did before. This is something I’ll bring up with my doctor when I have my follow up with him.

So how’s it working? Pretty well actually! I’m at about a 75% pain reduction at the moment with the interval setting on my device. What that means is that the current is on for 25 seconds, off for 15. Because many people report that they eventually build a tolerance to this treatment, this might help extend the amount of time I get relief, as well as save battery life. I have the ability to change it to constantly on for days when the pain is bad (rock concerts, eating sugary stuff, etc). I will still have some of my dietary restrictions, but I no longer have to live with a constant worry of accidentally eating something that will knock me out for 3 days. Now something might give me a minor headache, much like a normal person prone to headaches would have. I’ve been off drugs for a few days now, save for the post-op meds to help when I sleep, and the feeling is amazing. I love not having to take the high end narcotics anymore, and it’s giving me tons of energy, which, when you’re told you’re not allowed to do physical things during recovery can be frustrating. Given how good I’ve been feeling, I have to keep remind myself “No, you probably shouldn’t go learn how to snowboard this weekend”. I still haven’t regained feeling in a lot of places on the right side of my head, but I imagine that will come back as swelling continues to come down. But aside from that, and a bit of pain when I move my head around, I feel almost back to normal. Well, at least on a physical level.

The sutures all come out in a few days, but the response to my now visible scars has been mixed. I get everything from “That’s awesome! You look like a Mad Max character!” to “Just looking at it makes my stomach turn”. I’ve taken to wearing a hat in the mean time to avoid making small children cry. I’m missing about 60% of my hair with the additional bits he’s taken off in this most recent surgery, and once I’m a little better healed I’ll talk to a hairdresser about my options. I’d be lying if I was said I wasn’t tempted to just shave the rest of it off. I’m thankful we did this in the winter, since no one really thinks twice about seeing someone in a toque in Canada, even in the office.

Toques: Office approved attire in Canada (Bonus points if you spot the lead!)

Toques: Office approved attire in Canada
(Bonus points if you spot the lead!)

So long story short, I still have at least a few more weeks of recovering to do, some cosmetic items that should clear up over time, and a bright outlook on how life looks going forward. Now that the conversion is complete, I guess I have to retire the “Going Borg” mantle. Expect to see updates on things as they pop up, like my surely inevitable detainment by the TSA, in “Tales from the Hivemind” going forward 🙂

Thanks to everyone who’s been supporting me through all of this! If anyone has any questions, or stubbled onto this post when looking up headache treatments, feel free to reach out to me. I’m happy to answer any questions people might have 🙂

6 thoughts on “Going Borg Part 4: Enter the Hivemind

  1. I am an NDPH bad ass myself- This is awesome that you have had success with this! I know everything is a road and getting back to a healthy place mentally after so much suffering is just as much of a journey. Best wishes to you!

  2. Hi Donna,
    Coming up to 3 years after your procedure, how are you going?
    I have just had the occipital nerve stimulator trial, it didn’t work for me. I am now doing research on the supraorbital stimulator. Would you recommend trying it? How bad were your migraines?
    Would appreciate your feed back.
    Sharon

    • Hi Sharon!

      I’m doing quite well! In the last couple of months I’m a little more prone to bad days, but it’s expected and I need a tune up on my programming. But 3 years with no adjustment isn’t bad at all in my books!

      I’m sorry to hear your trial didn’t work. When I had mine I was seriously stressed. First because I wasn’t sure if it was actually helping. I couldn’t tell if it was surgery pain, swelling, or if it just wasn’t working. Even by the end of my 7 days I wasn’t 100% confident. I knew it was different, and there was some easing of pain where the pain normally was, so I went for it.

      The second reason I was stressed was because only about 20% of my pain came from the occipital nerve. The worst of my pain came from the front (supraorbital), and we knew that for sure because we could narrow down which nerves were the trouble makers by the nerve block injections.

      I am 100% glad my doctor went and studied the supraorbital install. For me it was life changing. I didn’t have “migraines” so much as a single continuous headache that would fluctuate in intensity. I wore sunglasses and earplugs at all times to deal with it. Thunderstorm? I’m out for a day. Eat one of my trigger foods? That’s 2 days I’m completely useless.

      I still have my headache, but it’s background noise now. I can eat normally now, and I’ll still get a headache from my trigger foods but it can be e taken care of with over the counter pain meds.

      If you think a supraorbital install might be key, I’d certainly say ask your doc for a nerve block to confirm and see if you can find a doc to help you out. For me it was a game changer, and I really hope it helps you

Leave a reply to Sharon Cancel reply