Update

It's been a hot minute - probably a good year since a posted. Last time I believe I had just had surgery for my tethered cord in mid 2021. I haven't been quiet cause things were going well sadly - life has had a massive upheaval. I had my pump replaced again. Thankfully this was planned as the battery lasts for 7yrs so I now have pumpy 3.0. It was ok, but this is still another surgery, another time under anaesthetic, another recovery soon after surgery. Also more money....but that was the easy thing.

Around this time last year I noticed I had some discharge on my pillow and hair. I started seeing my GP - poor guy had a tough time seeing much through my hair (it's thin but there is lots of it and long). We started on some antibiotics and it cleared up for the time but came back during Xmas. So when I finally got back to see him after the Xmas craziness we decided a stronger and longer round. He had another look and was perplexed that he couldn't see where it was coming from but could see the discharge. Also why an almost 3yr old scar would start weeping suddenly. I joked to him it's weird cause it felt like my right screw was poking through not the central wound. We also did an X-ray and ultrasound. He warned me if this didn't work his next step would be to refer me to a specialist to reopen my scar and wash it out.

So the antibiotics seemed to be helping again - I even got my hair dyed (we avoided that area but the hairdresser didn't see much despite obviously spending a lot of time in and around my scalp. Next day (Thursday) it started up again so I boooed in for the next appt with my GP (didn't want to see just any old GP wanted one who knew my history) for Monday. Sunday night I experienced the most excruciating pain in my head. Looking back I should have called the ambulance but excruciating pain doesn't tend to make one think logically and it's not like I haven't had horrific head pain before and have access to pain killers. I got myself to a stage with a lot of meds and audiobooks and one position tiny bits of sleep knowing I would see the GP in a few hours.

I woke up and the head pain had subsided back to normal levels but on looking my entire pillow was saturated in fluid. Knowing the GP would either send me to emergency or a specialist to have surgery to wash it out I got my dad to take me to emergency. When we finally got through the doctor found there was a big wound to the right of my main scar and it measured down to the bone. The emergency decided they didn't have the level of neuro help I needed so after struggling to get an IV in and my first ever RAT test (yes I managed to get till Feb 2022 without ever needing a RAT test I'm that isolated in life). I was transferred to our cities main hospital. Where they couldn't find my RAT test so I had yet another at the door. I got settled into the burns ward (only spot left) and greeted by the baby neuro doctors on at that hour of the night. They shaved the back of my head which was a weird experience as I've usually had that done when sedated. They debated doing the washout surgery that night but I got bumped till first thing next day.

The next morning was the fun of getting ready for neuro surgery on my head number....1..2...3..4..5..6! And 5th time opening up this same one scar! While he wasn't the surgeon doing the surgery it just so happened that the surgeon who did my tethered cord release was in charge of things over in this hospital. So I felt in good hands that he had told them my stupidly complex history. I managed to cause difficulties early with two anaesthetists on both arms trying to get a line in (the one they had in from ER already fell out). Even with ultrasound we got 1 in and it was standing vertical being held by gravity and a prayer!

I woke up after surgery in pure agony the only thing I could cry out was for ketamine. I know this sounds weird but after 6 surgeries and the craziness that happened with my fusion (where they promised it and didn't and I didn't know this waking up in agony thinking it was just surgery and didn't settle till I was given "something" that was the ketamine - hello blind confirmation) I know what works and ketamine is not that bad a drug. So they finally started that and the nurses told me to always tell them to give me some amount of ketamine in all surgeries from now on. I know in my tethered cord surgery cause it was less intensive than my fusion they just gave me a dose rather than IV of it and that was enough. I just didn't anticipate this being as big but with all the scar tissue they went through and the brain bleach they would have used.

So I made it back on the ward with IV ketamine and IV antibiotics which they had through my FOOT! They couldn't even get a 2nd line! Then I hear from neurosurgery what they found/did. So for some reason the right bar of my fusion has been slowly working it was through my skin and made a giant gaping wound that kept reopening. Obviously being surrounded by hair it got massively infected as well and I had an MSSA infection. It's like MRSA but isn't resistant and they don't have to isolate you. So scary cause it's bad but not scary in the ways MRSA is. So they cleaned out the wound and filed down the bar and I was stitched back up again and the wound on the right side.

I emailed my surgeon (I live interstate to him) who did the fusion to let him know. Seeing I was tired I just emailed the generic email off his website that would go to his secretaries and asked them to forward it to him. I kid you not that I got a reply back in 5mins! It was a simple reply but I was shocked!

So I was in hospital for a week. It was a bit boring cause they had no TVs (public hospital) and I was in a ward with others so kinda dictated by their schedule. I also got given some really horrible news about a friend who decided to do something really cruel to me even knowing I was in hospital out of the blue. Which then put me in a very difficult position personally. Oh and then my city flooded! Like the hospital I was in is my states biggest hospital and we had a moat around us! There was one way in and out for all the ambulances, doctors, staff, patients, etc. so I didn't get any visitors after the first two days. Too risky and roads were closed. Some nurses were working triples cause they couldn't leave and couldn't get people in - but they were all lovely. I still remember one coming in to fix my needing IV one night thinking I was asleep I hear her whisper "what do you want from me" and I nearly burst out laughing.

I ended up with a PICC line (long term IV that delivers meds to the vein around near your heart). I was on IV antibiotics for 6 weeks at a hardcore dose. I looked it up and it was double the dose they give people who have life-threatening sepsis...I had nurses visiting the house every single day for 5 weeks (first week was hospital) changing the meds and carried around my bag of meds 24/7.

I was transitioned to oral meds since then and have been on them continuously. So that means I have had antibiotics for 12months now and continuous antibiotics for nearly 9 months now. In that time I have also had extra ear drop antibiotics when my entire ear closed up (from the antibiotics), gel antibiotics for my skin and a course or different oral antibiotics for something else - I hope they name the super bug after me. I don't think I have any bacteria in me bad or good! Every 3 months infectious disease doctor rings (never thought I would have that speciality) and say - another 3-6months? Basically, as long as I don't have major side effects they continuing it. As if the infection gets into my fusion hardware that gets ripped out and replaced. I think seeing no one here did the surgery for the fusion no one is willing to make that call.

I also got another diagnosis myelomalacia- came up on a recent MRI which means my spinal cord is softening?! Only reference I can get to that is people who are in late stage MS and how in its late stages causes paralysis. Probably should ask the doctor about it because it only came up in the report which the doctor didn't have. Also my thyroid is enlarge - with my family history my doctor said I have 2/3 chance of developing a thyroid disorder by 40....

I have started seeing a general physician so I hope this might help coordinate things. He admits things are complex but doesn't sound overwhelmed yet. He spent a lot of time with me, let my lie down during the appt and was upset for me how little testing I had actually had done despite all the doctors. So hoping we might get somewhere! Apparently the letter who wrote to my GP was like a chapter from war and peace long and my GP is looking forward to the next instalment of the novel. I'm just happy to see someone who listened and seemed interested and smart. He was also caring and smart. He was also someone who I didn't cry recounting my history even when he kindly queried pointed out I'd had been through some traumatic experiences.

So that's been my years of mainly downs. I'm hoping maybe to have some ups soon to counter act some of this because it's been getting hard taking one hit after the other. I'm also along the lines of an ADHD diagnosis which makes sense for me seeing I'm doing this instead of working. I started assignments the afternoon they were due, I would clean instead of do anything else and not matter what I never seemed to figure how long anything would take to do among many other things.

So here's hoping this is wrapping up a rather crappy year and with all the crappy years I have had that's saying a bit.