I have become a cyborg!!


Did the trial surgery a couple weeks ago, and did the full surgery this morning.

I now have an implant that zaps my muscles in some way I don’t fully understand, to stop my urethra spasming so I can urinate. And it’s working extremely well most of the time and moderatelycwell the rest of the time. I’d forgotten what normal urination felt and sounded like. (And yes I tried other treatments before going to this.)

I now have a remote control with a receiver in my butt of all places.

It’s going to take awhile to recover from the surgery though. The pain isn’t too bad (surgical pain is usually less painful than several of my chronic pain conditions). But bodies don’t differentiate between surgery and being stabbed, and I’m on megadoses of antibiotics, and anesthesia makes me weird for at least a few days. Not to mention that my body is trying to figure out what the implant is doing inside of it. I hadn’t recovered from the surgery to put the test wire in by the time they did this surgery, so figure on me being blech for awhile (and I had to promise the doctor I wouldn’t do all the bending and lifting and crap I did after the last one).

If I don’t moderate comments very fast, this will be why. Then again I’m lying around not doing much so maybe I’ll do it more.

About Mel Baggs

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

31 responses »

  1. Wondering if any of these issues are related to past mistreatment in various places….being bullied into submission in residential settings….

    If it was you can kick some ass in court perhaps…

  2. No it’s part of a bunch of neurological stuff I have with spasticity in several body parts. There are real things they have done to me but this appears unrelated. It started about ten years ago was intermittent at first then progressively worse. Not related to any external event, that’d the first thing we ruld out.

  3. Woot for the second surgery being over with! And gah, good luck getting through the antibiotics thing. I know how high doses of that stuff can really mess with a person’s guts (though is still better than the alternative of a nasty infection…).

  4. Glad it seems to be working well so far! And I hope you recover quickly. Agreed, antibiotics and anesthetic recovery are no fun.

    My last bout with general anesthesia was better than ever before, though, since I found out that all it takes to prevent the days of vomiting and 105+ high fever (and worries about infection, so longer and more stressful hospital stays!) I was getting afterward is the addition of some extra drug. After I mentioned the previous reactions to the anesthesiologist, it didn’t happen again. I only mention this in case somebody else has run into the same problems, and think they just have to live with it!

  5. So, I am going to become one soon too! I am getting some put in my neck to stop my head pain! I can’t wait! I had the trail and it took away most/some of the pain. I am sick of pain and weirdness that comes with my head injury. This will get rid of the pain. The weirdness I am dealing with in other ways…

  6. Firm Hugs for a speedy recovery…and for the replenishing of yourself with good bacteria…and
    getting over the anesthesia….and getting the hang of the new remote control system…Must be very odd in the beginning…but what a thrill to actually be able to perform this bodily function once again after so many years of frustration. The sound must be deafening!

    I thank you for sharing this as someone else may not realize this type of help is out there for them. “cyber hugs”…Mom

  7. Hope you feel better soon! I also hope the new device continues to work well for you. I recently saw a documentary about a man who had a similar-ish device with the switch in his scrotum! Being female I have no idea whether that is a better or worse location – I guess we’ll never know!

    Having had my own surgery a few months ago I can very much relate to what you are saying! Even my Consultant said “well, we did basically stab you multiple times!”.

    I had huge amounts of IV antibiotics administered over only two days and also had really severe nausea with vomiting for a few days after the anaesthetic.

    Urocyon – I’ll certainly bear in mind what you said as if they can prevent it for the possible future surgery I might be happening that would be great!

  8. Mom-

    haha! I suppose if that did happen…..she could say…..hey, you did not turn on the t.v., you turned on the p.p.!

    Or something silly like that….just to give her staff and herself a good laugh…..if that did ever happen….but hopefully it won’t as that would probably be rather annoying…..to have someone accidentally flip the thing on or off unexpectedly.

  9. Andrea…!! :) Humor is a good thing.

    This is also one case where having spare batteries is definitely a must. Puts a whole new meaning on being prepared.

  10. I’m intrigued by the fact that you get a remote control with it. Remoteness is not a concept that I would normally link to a person’s own body functions.

    Best of luck with your recovery!

  11. The remote control actually is like a regular small remote control with a cord attached to a black piece of plastic. The black piece of plastic, you have to hold up to the implant (which is in your butt) in order to use the remote. But you barely ever have to use it. The device is on constantly. You mostly need the remote if something (like some store security systems) has turned the implant off, or if for some reason you need to control the intensity of the electric pulses. But so far neither of those things has happened to me so I have not had to use it since the first time I turned it on. Which surprised me because I was always having to fiddle with the intensity of the trial device, but apparently the real implant works better because I have never had to adjust it and never had a problem peeing.

    I’m glad this device is harder to adjust. The trial device just adjusted by a knob, and one time I suddenly had searing pain down my leg and thought I had dislocated something, and it turned out something had bumped the knob so it was sending unpleasant levels of electricity into my body. Having to press a plastic thing to my butt first makes such accidents much less likely.

  12. So if I’m understanding correctly, there is little chance of someone grabbing the wrong remote and thinking it is for the TV or something? (If not, if someone tried to use the remote and ended up causing an unexpected reaction from you, you could say “Wrong remote–‘urine’ trouble now!” (Sorry…I have a juvenile sense of humor sometimes…)

  13. Mom-

    Yes humor is good for many things….survival being one of them. I don’t know that we’d ( I mean myself, Ivan, and Athena) still be sane without humor….

    Come to think of it how do I know I’m sane right now? I really don’t.

  14. Yeah the remote seems designed to avoid that. It’s closer to the remotes we had when I was a kid, where they were connected to the VCRby a wire, rather than a wireless remote. Although some signals (such as apparently the security scanners in doors of shops) can turn the thing on and off apparently sometimes.

  15. Littlewolf: hahaha!

    Amanda: I read your February post “another medical opinion bites the dust” and while I agree that the doctor’s response to you was deplorable (Bedside manners and patient interaction 101 should definitely be a course taught at any accredited medical school) he was right in thinking that you cannot possibly “forget” to urinate. Urination is not voluntary…..that much is true. The doctor was kind of an idiot for not really thinking about what you said other than just the particular words you used.

    And people think autistics are too literal….we take things too literally…this doc fellow was doing exactly that.

  16. If urination weren’t voluntary we wouldn’t be able to hold it. If I can forget how to move my arm I can forget how to open my urethra on demand and that’s exactly what I assumed it was. The fact that for me it turned out to be a matter of muscle spasms doesn’t mean it’s impossible to forget how to open your urethra and let the urine out. Happens all the time to people with this sort of movement disorders including occasionally me (still — this implant means that I can open my urethra when I issue the command, it doesn’t guarantee I can iremember how to ssue the command). If you have never forgotten how to do a movement then fine but it is absolutely possible. If urination were purely involuntary everyone would be in diapers.

  17. Touche…..never thought of it that way before….

    I suppose its the PRODUCTION of urine that is completely involuntary…..rather than the act of urination itself.

    I suppose also that the reason I assumed it was impossible to forget how to open urethra and let urine out was because whenever I’ve had to pee, I just sat on the loo and didn’t think twice about it…..it just happened.

    Yet ANOTHER misinformed opinion (mine this time) bites the dust.

  18. Amanda, I am glad your stim machine is working out. I am having some luck with mine, though with it being in the cervical area of the neck, to control head pain, I end up fiddling with it often. I am still needing pain pills, but it is getting better. After years and years of doctors not believing me, this is so nice to have some relief from the constant pain I was in.

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