Halfway there….

2012-11-18 18.06.37I wasn’t going to post an update until everything had been completed but it seems people want to know how it all went judging by the messages I have received.  I am pleased to say it went well, and for 5-6weeks post surgery I had really remarkable results.  I am chomping at the bit to get powered up now and get back to that first post op high.

Stage One DBS Surgery has been successfully completed and I eagerly await part 2 due to be scheduled as I write (hopefully soon).  The rationale for the NZ method behind splitting the op’s -first the implant of probes in brain) and second the connection of wires to pacemaker device and implant into chest – is because patients can experience positive effects from the first surgery alone and it can be difficult to separate out those from what the actual device is doing.  Thus tweaking the settings on the device post surgery is more prone to error and subsequent readjustment, something which I imagine is a hassle for patients and medical teams, although I am yet to experience this first hand.

I suppose the best I can do is describe what it was like, based on my mostly intact recollections.

Tuesday 13 November (a lifetime ago it seems).  I arrive at hospital about 1pm and get shown around the ward, including HDU (High Dependency Unit) in NZ medical jargon, a step below ICU, where I will spend the following night.  After a round of blood tests, and general poking and prodding by the nurses, I am kind of left to chill as best I can.  My wife and I are getting pretty nervous by now but trying not to let each other know too much in case we stress each other out.  A good friend who is an anesthetist at Auckland Hospital comes by and reassures us that we are in the best of hands and wishes us luck.  Later, the neurosurgeon’s junior comes by and has a chat to see how things are.  We have the “talk” – while the risks of serious complications are small, they are there and he needs to be sure I know and I am still willing to go ahead. Death, a stroke…but I never once query whether this is the right course of action; I and my family, deserve this chance. Fair to say sleep was not easy to come  by that night but I managed to drift off for a few hours.

Wednesday 14 November: Un-medicated to start the day, and I feel like I have offended an Italian mob boss and earned a concrete body cast.  Not fun, but short term pain right….Somehow I shower and wash my soon to be shaved hair.  They come for me soon after 7am…First to pre-op where my very nervous wife and my mum are waiting. Lynn reminds me that I’m nowhere near as funny as I think I am so don’t make too much of a dick of myself. We say our “see you soons” and its down to theatre where the party is just getting started. A nurse, Kate, shaves my head. Reuben, another nurse takes a photo on his iphone so I can see what I look like bald.  I comment that Kate could have a second career as a hairdresser, to which Reuben responds or a first career! A few laughs break any tension and I relax as the dope from the anesthetist starts to work its magic.

They have to fit my head to a frame, the top of which is also the map – the fused MRI and CT images, which the surgeon will use to implant the electrodes in the correct spot, and which is then bolted to the bed so I don’t move- I have been warned that this is the worst bit of the whole surgery. It lived up to expectations.  Luckily the anesthetist isn’t stingy with the good stuff, as they try to screw it into my skull.  Clearly something is amiss as I can hear the surgeon say that it wasn’t fitting properly and to get another. I am quite uncomfortable and let them know…more needles to the scalp ensure I can feel what is going on just no pain.  Which I imagine is excruciating as I feel the screws turning in my skull.  Chalk it up to life experience huh.

Soon they get a better frame for my fat head and it screws on easily. All residual discomfort is gone and the team are satisfied.  Then its off to get a CT scan.  Pretty doped up by now I enjoy the pretty lights as I go zooming by in my comfy bed.  Coool……Soon its back to theater and then I hear the drill come out.  A bit of pressure on the skull then they tell me they are starting.  We had been told that each center in your brain has a unique electrical signal and the sub-thalamic nucleus  makes a “chk chk chk” sound when activity is registered.  As the probe goes in I hear the sound get louder and louder.  Pretty trippy.  The team are pleased with the placement of the first probe and switch to the next one. This cannot be easy – the little pink olive shaped structure in this picture marked STN is what they are aiming for.  Not exactly the easiest thing to do, but it is brain surgery after all and I am in safe hands with Dr Bock.  Wide awake and high as a kite I just relax and let the team do their jobs.

(c) The American Physiological Society

The placement of the second probe goes well and soon they have me rigged up to the power.  This is where the fun (for me) really began.  Lorraine MacDonald, our amazing Movement Disorders Nurse Specialist, is with me and has me complete particular tests they benchmark Parkinson’s against, as Dr McAuley fires up the power.  He asks how it feels and I say AWESOME. Chuckling he says no really and I say REALLY AWESOME.  Apparently that is not the usual response, not to mention clinically unhelpful! After a few adjustments the team soon find the outer parameters of the power which my brain responds to, when I feel the left side of my face scrunch up and I go blind. Sticking his head around the frame and into my field of view, Dr McAuley agrees- too much power!!  All settles back to normal as the power is dropped back a notch.

I guess the best way to describe it was I felt more alive than I have in years. As the power shot through my brain, I felt like I was in a performance car or speedboat as the driver drops the pedal and the engine revs up. It was an amazing sensation.  image (c) The American Physiological Society 2013

Soon, around 1.30pm I was wheeled back to recovery, after some ill advised singing and poor taste jokes (well I haven’t changed THAT much since I got PD). Give that anesthetist a gold star, his work was in top form that day.

One night in HDU then one night on the ward. Less than 48hours after major brain surgery I walked out of Auckland Hospital much much better than going in (sans walking stick). I cannot really explain how good that felt.  But trust me, it was a great feeling indeed. A few tears of relief, gratitude and joy were shed. Mostly by me.

The positive effects of the surgery gave me 6 really good weeks before Xmas but sadly I am back to pre-op condition now.  But I have only got the probes inserted, not the pulse generator which will provide the power.  So it was a huge success, 10/10 according to the surgeon and now that the swelling in my brain has gone down (hence return to stiff and shaky), they will have I hope less trouble getting me at a workable level quickly once I have surgery part deux and then I’ll be LMFAO as the kids say.

Thanks for all the messages of support, it was humbling. I’ll post more soon and more frequently now that I kind of have movement in my fingers (some of the time at least)…In the meantime Happy 2013 and I hope that you and your loved ones have had a safe, happy healthy Xmas and New Year break. Ciao for now…AJ

4 Responses to “Halfway there….”
  1. Harley Hodgins says:

    Thanks for this!!!!
    Surgery for me in 3 days . Seem like forever but now it seems like where did the time go.!!!! For me they are only doing my one side so it will all be done in one surgery. Phew!!!!
    I hope all goes awesome for you !!!!
    Once again thank you for your blog !!!!!!
    Harley 🙂

    • AJ says:

      No problem, glad you found the blog and it gave you some help in any way. My next date is a week away, the 11th, so I am really looking forward to getting my power on! Best of luck for your surgery and do let me know how it went, I will be thinking of you. Just remember its easier than you think so keep calm and smile and think of the positive changes you will be making.


      PS are you going to the Montreal conference in October? My wife and I are flying up from NZ, can’t wait.

    • AJ says:

      How are you doing post surgery? I do hope it was successful!

      • Harley Hodgins says:

        Hi AJ
        Surgery went well !! All installed and waiting to be turned on , that happens on Feb 21st :)!!
        Can’t say that I am a big fan of the freezing process , wasn’t really prepared for that…..Ouch!!
        Went into hospital the night before surgery , then preop in the morning and operating room by 09:00 and back in room by around 15:00. Then spent the night at the hospital and was up and walking next morning and then home in the afternoon. Hard to believe how fast it all happened!!!! The medical staff at University Hospital in London Ontario were awesome!!
        Well its the 12th today so I hope your appointment went well yesterday and your beginning to see the improvements.
        Take care and all the best!!!!!!!!

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