Time, Healing & Patience

The day after I had two holes drilled through my brain I felt ecstatic. As if I had travelled back in time to before my diagnosis. My hands and feet were steady, my stride had lengthened, the fluctuating On/Off cycle induced by the medication had almost entirely disappeared. You can see as much in the interview below. The first 44 minutes were done a week prior to the surgery, the last 16 minutes were the day after.

The next day I had the second phase of the surgery done. While anaesthetized I had wires tunneled through my head, around my ear, down my neck and then connected to a battery implanted in the tissue above my right pectoral. The next 24 hours I was in constant pain. Every time I moved my right arm even an inch it felt like I was tearing open the hole stapled shut on my chest. Couldn’t even get up to go to the bathroom.

The next day I was sent home where I spent the weekend thinking that something must have gone wrong during the surgery as my neck was stiff and my head was swelling. Be patient I was told, this is normal.

The weekend passed and things got better. I removed the bandages to expose the wounds to the open air. My surgeon told me not to touch them, don’t shower and don’t put any cream or ointments on them, just let them heal. Humbling that our biology, when given time, is better at healing than anything we have come up with.

The day I got my staples removed was tough. Not only was the removal itself more painful than I was lead to believe, but I spent the rest of the day lying on the couch feeling as if my brain was oozing out from the now freshly opened cuts on my head. I’d check the mirror again and again just to make sure that nothing was seeping through. The mind can play some horrible tricks on itself.

However, I am now 15 days post op and feeling pretty good. Not ready to run a marathon, but feeling like the worst of it is behind me. Though I know that might not be true as in a couple weeks the programming will begin. I’ve been speaking to a number of people who have gone through this before and learned that I will likely be told many more times to be patient.

A couple of those people are now having to contemplate doing the surgery again as their programmers can’t find the right settings for them and suspect that they might have the leads in the wrong place. One has lost the ability to speak properly, another might need back surgery to fix a complication that they think was caused by the DBS.

I already feel a little bad for my neurologist who knows I am anxious to get this process going. A process that could take up to six months to get right. Patience is a virtue they say. I wonder if “they” ever had DBS?

Despite all that, I am feeling optimistic, excited and above all just curious to see and feel what the programming is like. Ready for whatever the future has in store.

For more on my post op thoughts and impressions listen to this Stimulating Brains podcast in which I was interviewed by DBS imaging expert Dr. Andreas Horn.

5 comments

  1. When we get to X then we’ll do Y…Just do Y. Infinitely do Y. X depends on Y! F*** X. Y in Infinity solves for XYZ!

  2. Hi, thank you for sharing your experience! I had dbs about a month ago, just one side, which I thought was a mistake doing just one side, however I’ve talked to a few people that did one side at a time and had great results. Patience has been extremely challenging, Whoever “they” are have definitely never had dbs, lol!
    I’m really trying to stay positive, it’s been very hard though. So far I’m not happy with the results. The one bright spot is the dyskinesia on my right side is gone! And the left side is manageable. Negatives are my speech is worse, it was wasn’t great before. My balance is worse, a lot of clunky lurching steps, and I’ve had to catch my balance more times in the last month, then the last eight years.
    To back up, I’m 48 and was dx at 40, I’m stiffness, rigid, and bradykinesia dominant. I decided to have dbs because dyskinesia was getting to strong to enjoy my on time, and I want to round out my on/off to not be so drastic. I’ve been tied to my medications similar to you. And I was secretly hoping that I would have other improvements, and just feel better!
    Another negative is I was not told, or had any idea that there would be a large lump on the side of my head. It’s part of the device! It was my understanding just the wire might be noticeable. For an elective surgery I think one of the goals is to blend in, not have something that draws attention to it!
    I’ve had one programming so far. In the office I noticed an improvement, but real world I can’t see the difference, and don’t think I’ve had any improvement. It’s probably just to slight to notice. So that’s my experience so far, still hoping for the best, but my expectations are significantly lowered.
    I hope you get the results you’re looking for, and I’ll look forward to following your progress!
    Alex

    1. Thank you Alex for sharing that. I start my programming in a week and a half and from what I hear it can take a long time to get the settings right. Wishing you all the best going forward.

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