Surgery Nightmare

It’s been a week since my knee surgery, and I’ve been hiding like a cave troll because not only have I felt like one until now, but I also looked like one (however strangely didn’t smell like one?). It was my sixth surgery overall, and third one on my knees. And it was a chipping nightmare.

I’ve waited five years for this surgery, ever since I was attacked at an Amity Affliction gig in Melbourne in 2012, my knee dislocated for about an hour and a half before we realised the ambulance wasn’t coming and took a taxi to the hospital. They couldn’t pull me out of the cab because I was screaming so much, so they gave me a morphine whistle, and I don’t remember much after that. Also, I’d apparently snapped the medial quad in the process. Strangely, the surgeon decided that my left knee (previously dislocated and operated on) was in more need of surgery, so he opted to do that instead. Apart from a long recovery and a short-lived bout of hives from a recovery IV, there were no problems.

However.

I informed the anaesthetist that after my first knee surgery on the other knee in 2006, I’d had issues with my TMJ, possibly due to position/breathing tube during the surgery, and that I’d had the hive reaction to the IV after my last surgery. Although no one else could find a cause, he pinpointed in my file that it was due to morphine, so decided he’d concoct something that wouldn’t give me a reaction. I told him whatever he recommended, as he was the expert and had taken the time to call and do a pre-op meeting with me. The surgeon said it was a normal histamine reaction, and not an allergy.

As soon as I woke up in recovery, I immediately started screaming. I could feel every single incision point, and it was all burning, and my hands were tingling like crazy – like they were going to explode. The nurses told me to meditate and focus on my breathing and that the doctor would be there soon. Apparently he came an hour later, after telling my parents I’d be out in 40 minutes, and I remember him asking me the same questions and everyone being quiet and telling me I was just panicking and to breathe. I just kept apologising through tears for causing a fuss and scaring the other patients in the ward. After a while, I realised there was one nurse next to me, telling me to wake up and breathe because I’d fallen asleep after a huge cocktail of painkillers, and my breathing had slowed to 4 ‘resps’ per minute. Later, she took me to my fam, waiting in my room.

I had been in recovery for three hours.

When we got to the room, she explained what had happened, while I started feeling extremely hot, and my hands and arms felt again like they were going to explode with pins and needles, now spreading from finger tips to elbows. I was on so many medications that I couldn’t stay awake, even though I wanted so badly to tell them my perspective, but I just remember everyone putting cold packs and ice around my body. That night, I stayed awake after everyone had gone, with two drips of ketamine, fentanyl and oxycodone in my arm and heart-rate monitors every half an hour, annoying the nurses when I told them something wasn’t right or that I needed to go to the bathroom (the drips had to be unhooked and a rollator brought to me to get out of the bed), until they took the painkiller button away from me (that particular time I’d used it twice in an hour – it’s meant for every few minutes).

I stayed in the hospital two nights, saw the surgeon for one minute, during which he prescribed a double dose of painkillers to take home, and awaited the anaesthetist, who never showed. The pain was always there, and I had to confirm to the nurses, through sobs, my name – for the fifth time during that shift – in order to get the dose they were late with. When I got home, I realised they hadn’t given me any painkillers, just the long-acting ones for night, so I had to fight for that, after which they claimed I had ‘left’ it at the hospital, later that night.

Every day since, I’ve been battling with the pain, barely sleeping, barely able to eat, and throwing up every. single. day. I have horrendous nerve pain under the operated area that feels like hot needles being shoved into my skin, and bad pain and muscle spasms under the knee that, again, the painkillers only make me feel drowsy or disoriented for.

To be honest, it’s been one of the worst time of my life, not counting a slew of other horrible things that have happened in the past couple of days, unrelatedly. I thought I was well-prepared, but I guess things like these are impossible to anticipate. I can’t wait for this to be over and to move on with my life already!

UPDATE:

Almost a month on from surgery, I’m still battling nausea and vomiting almost a litre worth each time, but only when I eat meat and dairy?! So I’m basically an unwilling vegan at this point – or plant-based, I guess. The stitches have been taken out, and I’m getting around in a wheelchair with a leg extension and crutches, which have been really hard on my shoulders and wrists. I’m really trying to be positive, but at the same time I have to study for a supplementary exam, even though I was advised to take this semester off, and have three medical certificates. So I’ve been trying to cut down on painkillers to concentrate…it’s not been great.

All I want is to be able to walk by myself and get on with my life. It’s so frustrating and lonely, but I have another appointment with the surgeon in a week, so hopefully I’ll be able to start physio. I just wish everything wasn’t so difficult. Even things like showering are so draining and leave me with lasting pain, and my body feels twisted to the point that my back will hurt more than my knee. I feel awful asking people to get me this and that and being waited on, or making a trip out for a couple of hours into a major, planned out endeavour. If it sounds depressing, it’s because it is. I’m trying to remain positive; really, really trying, so I don’t want to even mention the majority of things. Maybe I’ll do an honest post on what to expect some day when I’m more removed from it, but right now it’s just too fresh and painful still.

Anyway, I’ll start posting more again from now on, about actually interesting topics, instead of my personal hardships!

An Official Diagnosis…

As I count down the days of the week left before my third knee surgery, I find myself in limbo once again.

 Today, I finally had my appointment with the Rheumatologist I’ve been waiting to see since I booked, maybe 4 months ago. It was underwhelming, to say the least. He had been recommended through an EDS forum as being one of the only people on the Gold Coast who could give an official diagnosis for EDS, especially Type 3 (Hypermobility – my type). I’ve seen countless doctors, physios, occupational therapists, chiropractors and podiatrists who all agree that I have HEDS, not least of all my orthopaedic surgeon who operated on me, my father and brother, but somehow they are all unable to give me that one elusive diagnosis. Only the rheumatologist or geneticist can (and there’s no gene for this type of EDS, although apparently they will still do the testing for ~$2K), and he….well, I’ll run through what happened.

First: he did the exact same physical test (Beighton score) that all practitioners have done on me, with one major exception: he did a bafflingly condensed version with no follow-up questions, despite having my entire medical history in front of him in writing, as well as knowing I’m about to have a third patellar stabilisation surgery on my knee. He basically had me pull my thumbs back to my arm (tick), hyperextend my elbows (tick), lightly touched my fingers a couple of times (??), asked me to touch the floor with my hands (tick) and seemed surprised that it was so easy, then had me lie on the table and touch my knee, tried weakly to make my legs hyper-extend (the one that has had two surgeries now doesn’t hyperextend for the exact reason I had the surgeries – something you’re supposed to count in the score), then made me lift my legs in the air and move them around slightly. After which he drew a stick figure of the supposed points of the score – one of which was in the groin, er, sorry, what point is that???? – and counted that I made 5/9 on the Beighton score. Every other person I’ve seen has confirmed I’m 8-9/9, but fine, I guess that still qualifies.

Then he said he’ll write a letter confirming I have Benign Joint Hypermobility Syndrome, aka Hypermobile Ehlers-Danlos Syndrome. Which…is not correct anymore, albeit in the controversial new diagnostic criteria, which has its own severe shortcomings. Oh, and for fibromyalgia; something I thought was difficult to diagnose in the first place. I really don’t care at this point if I have fibromyalgia or dysautonomia or Raynaud’s or whatever else in tandem with EDS, because although they may be difficult to deal with, the bane of my life is the dislocations I’ve had since literal birth (born with a dislocated hip) and subsequent daily pain and fatigue, deterioration of joints and the lack of management or belief by others in something that is clearly demonstrable. I’m not taking away the experience of others with these issues, however in my case, having had three major surgeries already in one area for this specific reason and most likely several others in the future, this, to me, is the most urgent and legitimate cause for any concern or want for diagnosis.

When I asked “Ok, so what now?”, having been told that seeing a rheumatologist is the be-all-and-end-all, he said I can take an anti-epileptic or antidepressants to help me sleep, however after some discussion I basically prescribed myself some Melatonin instead. He said I can do the most basic exercise, like hydrotherapy, pilates, and surprisingly yoga (a big no-no for hypermobility). If I want to get some kind of disability recognition or special consideration for uni, I have to go from a rheumatologist back down* to a physio for a physical examination. And that was it.

[*I don’t mean any disrespect here; physio has done me the most good out of anyone, barring my last knee surgery, I’m merely highlighting the fact that it was built up so much to see a Rheumatologist to get the ultimate help, and instead he directs me right back down to the first point of contact to make any kind of progress. ]

I don’t even know what to say right now. I’m not sure what I expected, but I thought at least there would be an “Okay, this is a clear case, let’s do a proper Brighton criteria to make sure, I’ll give you the proper diagnosis, and this is how we manage it and where we can go from here”. Not: “Umm…yeah…ok…so, you could do some yoga and take some supplements to sleep, ok? Thanks for coming in”.

Literally any other person, including occupational therapist, physio or GP could have diagnosed me (and have) in a fraction of the time, and for a fraction of the cost. But since they don’t have the title of Rheumatologist, even though they use the exact, and in this case more thorough, diagnostic criteria, there is absolutely no validity. It really feels like a system designed to keep you from getting the help you need and have overwhelming evidence for, for the arbitrary reasoning that seems to be the same as how the new criteria for Hypermobile Ehlers-Danlos was created in the first place, and which has been denounced by pretty much everyone in the community, minus a handful of people.

I empathise with everyone who has gone through this process, and worse. One of the most debilitating things about EDS is not just the chronic pain from dislocations that result in anxiety, depression and other systemic issues, but the fact that as an ‘invisible illness’, doctors tend to diagnose such conditions in a lackadaisical, haphazard manner. Even the Ehlers-Danlos Society itself doesn’t send a clear message to a majority of its sufferers. When your main advocacy group, and the medical community don’t understand the issue enough, then what hope do we have in getting the general population to understand our plight?