Sorry for the delayed post. The last 48 hours have been horrible to say the least. Can’t sugar coat this one.

Managed to find some laughs here and there (really cracking moments I’ll share another day when well enough to tell a good tale) but it was mostly a gruelling challenge. Had pockets of good health which some friends reported seeing but then it would quickly change.

Surgery itself went well. Exceptionally well. That side of things is better already. My arms are stronger and so is my grip strength. Now we focus on infection control from the discs. My surgeon has said that so far I’m getting the dream patient outcome when it comes to the surgery!


My post op was awful. I took a very long time to rouse. I felt paralysed head to toe. Thankfully I’ve had this before so I could calm myself. Although hard to calm when you have a few around you pleading for you to come too. Asking you if you know where you are and what day it is…. And I couldn’t answer those questions. Plus I had spinal surgery so couldn’t help but think ‘what if’.

I finally got through that and then realised I had a major trauma with an arterial line they put in whilst I was under anaesthetic. Whilst that is the kindest thing to do for most patients so they don’t feel it, in hindsight I should have had them do that whilst I was awake as needles are a trigger for my SPS and I would have known immediately and got them to reposition it.

No one knew that had happened until I came too and I realised it had activated an epic SPS episode. I proved this as the issue when painkillers did nothing and my hand was all clawed in clamped tight. My whole right arm was spasming and with two needles in there they were just digging and causing me significant referral and nerve pain. I’d say up there with the worst pain of my life.

I was pleading with them to take the line out and they were saying it needed to stay in as it was reading my blood pressure in real time and they needed to take bloods when I got to ICU. But the irony was it wasn’t reading my blood pressure as it was not sitting right so they had to keep manually pressing it into my wrist which activated me further. Torture.

If they would not remove it then I pleaded for baclofen to take the edge off. I had informed many parties along the way that this needed to be the action plan if a major episode occurred. But no one was keen to get involved with such a rare condition. And I think they were scared given my prior toxicity issues.

After what seemed like 2 hours of hell I was finally moved to ICU where I spent another long period of time trying to have them take my line taken out. Eventually I convinced them to take the bloods using the line (even though it meant agony) and then rip the line out and do my blood pressure the oldschool way with a cuff.

The nurse asked how quickly we’d know if it was an SPS episode caused by the needle and I said all of 1min. She removed the needle and immediately my hand retracted from the claw and the spasm was released. She couldn’t believe her eyes and was apologising no one had listened for the best part of 3 hrs.

Sadly because they’d left me activated like that for so long it had spread to my back and shoulders and legs and then my cannula. So they had to put a new cannula in my left arm which took a couple goes. It too activated SPS but I was able to manage it and my back and legs with heat packs.

By the next afternoon in ICU I’m still not in a good way. I knew because the physio came and I couldn’t weight-bare in my legs. Another tell tale sign it’s out of control. So now I was having more conversations to try get my baclofen dose increased. My specialists and I had this plan post surgery anyhow, and I’d thought maybe a week after surgery but now I knew it needed to be now. Again no one keen to do it. The ICU Dr noted after googling SPS that given the incidence of this disease is 1 in 1-2million in Brisbane that equates to me and one other! He seemed a little daunted.

My heat packs weren’t managing anymore so I asked the ICU Dr to escalate to his superior to get me an emergency baclofen dose approved. In the interim I engaged my GP on the idea who is the person to engage for an action management plan. He stated: “Yes good idea. 5mg three times a day is sensible, sound and safe.”

An hour had gone by and I’d still not heard from the ICU Dr and things were escalating in my legs. I also noticed the front of my ankles were swelling up and I think the compression stockings were activating me. My SPS is easily triggered by things touching me feet. So I pushed the nurse call button. I wanted to get these off and find out where the Dr was at with my baclofen and let them know my dr had written to approve my management plan and was happy to take a call.

It took over 10mins for anyone to attend to me in ICU. And each minute that went by my anxiety was escalating. I couldn’t help but think how one could be in ICU and wait this long. I knew my situation wasn’t life threatening but what if it was, I’d have been stuffed! By the time they got to me I was in distress and beside myself. I showed them my Drs message and demanded the baclofen and let them know I felt very alone and forgotten in there and I really needed them to listen and act. They were apologetic and springing into action as they knew they’d stuffed up.

They finally gave me some baclofen and then my move to the ward happened. I was very fortunate that the nurse taking me in was very proactive and thorough.

She apologised to me for what I’d gone through in post op recovery and ICU and asked me to do a feedback form as recently a new director started and they’ve been culling staff and it’s effecting patient care.

She also called my surgeon and noted that whilst it’s not his problem to help me with my SPS and that was the point of ICU Drs it had been very poor form in ICU and post op and asked if he could find someone to see me and get the matter sorted. First thing this morning an incredible doctor arrived to collaborate with me on a palatable management plan. It was such a relief.

After this entire experience, I now completely understand why the gurus have said not to use ambulances or present to any other hospital but the Mater without Dr Reece or my neuroimmunologist driving it. It’s too out of their league.

Meanwhile, throughout all of Thursday poor old Brie was not getting any phone calls from the hospital (as promised) and took it into her hands to make some calls and then when still getting no information brought herself in to demand some and wait patiently for hours and hours. She eventually saw me wheeled into ICU but was kept clueless for another hour or so whilst we got the SPS sorted, bloods and ECG done

Very grateful for her and all she did and for doing whatever she could to give you guys some sort of update and help my family as best could be done given no real news!

Thankfully as I write now I’m now finally stabilised again with my SPS. We’ve just given up on another cannula (I think we have had 6 goes now) and moved to oral tablets.

The surgeon has just been again and remains happy with my progress on that front.

The physio has been and I was able to weight-bare with the lovely wheelie walker. Got a lap of the ward in with a break half way. I’m feeling and looking about 87yrs old!!

And I’ve now got a new neck-brace. Nice to have a clean one after a couple months in the old one. But this one is not as soft!! But does its job stabilising me.

I’ve had a CT scan to see how the ops gone and await that.

All I want to do now is sleep as it’s been a couple days with none! I’ve been through the storm and think now its going to be calm! Would you believe my curtains in my new room are broken so thankfully Brie has lent me an emirates eye mask! So it’s about to be lights out here!!

The nurses here are stoked Jenbo & Mick are arriving tomorrow just in time for a handover out of this joint for no doubt far better care under their supervision! Hopefully I can do that from Monday. Fingers crossed.

PS thanks for all the well wishes. And comments. I am behind in replying. But will get there. Appreciate all the love and support.