Surviving a General Anaesthetic with H-EDS & PoTS

So as many of my friends will know I was in hospital yesterday to have a tooth extracted under general anaesthetic. It couldn’t have gone better really! I’ve spoken to a few people who have requested I jot down some of the ways the surgical team and I managed my ‘complex issues’ throughout the surgery and recovery.

I was originally supposed to be a standard day case but because of the EDS and PoTS it was decided at my pre-op assessment that I would be safer on a proper ward, that way I could have a profiling bed and be horizontal for a while before heading to theatre. I arrived at hospital on time but it still took them an hour and half to get my bed ready (an hour and a half in a windowless patient waiting room with no oxygen and the heating cranked right up). Not a good start but once I had a bed everything went very smoothly.

I was fully prepared with journal articles about EDS and print outs from the HMSA charity and Mum had threatened to scrub in if she didn’t feel the team could look after me but the anaesthetist came to visit me armed with my notes, which she’d read through. She admitted she hadn’t known much about EDS but she’d done some research and knew some of the different types and the big risk factors associated with EDS. I told her if she knew there were different types she probably already knew more than most medical professionals!

She told me straight away that I was the expert here and I should keep telling the team what I needed as we went along. It was already agreed that I wouldn’t be laid flat at any point and I would have pillows under my knees. We talked about PoTS and my heat intolerance and she offered me a choice of warm or cool IV fluids to have while I was under. I chose cool which I think was the right choice since I didn’t feel PoTSy at all when I came around.  She asked about the stability in various joints and about my respiration and reflux, she hoped to get away with minimal tubing down my throat (and she did). I also mentioned my cooling vest and she told me to bring it with me so I could have it in recovery if I came around feeling too hot, I explained the signs to watch out for if I don’t notice I’m overheating and she made notes for the recovery team. She asked what post-op pain relief I’d like and we decided to stick with my usual PRN pain relief.  After a few pleasantries she said good-bye and I shared a relieved sigh with mum. She was literally my best case scenario! She knew a little, was willing to learn more and listened to what I needed! Brilliant!

The surgical team came down a lit later, they were here for the minimal time possible. They had no questions, I had no questions and the anaesthetist had shared my notes everywhere anyway.

A little later I was taken down to theatre. Once I arrived there the anaesthetist lady met me there, she spent ages tapping the back on my hand and managed to get a cannula in first try! I also have pretty much no bruising today! I then needed to be put on a slide sheet, the team let me choose whether I sat forwards or was rolled sideways to fit the sheet. I chose to sit forwards under my own control then lift up my bum to fit the sheet the rest of the way. Once I was on the sheet I got hooked up to the saline IV. The team kept me awake and took me through to the actual theatre, they made sure I was comfortable and then slid me over to the table, they asked if that had been bad for any of my joints but it was fine, before they put me under I was introduced to the whole team, they made sure I was well supported with pillows and that I was comfy. I agreed that was all fine and that if they slid me back the same way I should be fine. Up until this point they’d let me keep my tinted glasses to avoid migraines etc. The anaesthetist made sure I’d closed my eyes before taking off my glasses and she did a really good job of talking me through everything they were doing until I was out.

I remember the fentanyl and the anaesthetic but that’s it..

I came around in recovery sat in a very comfortable pre-arranged position with pillows under my knees, already wearing my glasses and with my cool vest within reach. The team were great and made sure to ask if I was comfy as soon as I could speak. They told me the time and did my obs and explained how the surgery had gone and that I had been given a LOT of local anaesthetic so I would hopefully be numb for a few hours. I still had some packing in my mouth and they let me decide how long I thought it would take my gum to stop bleeding. After about 10 mins my blood pressure had come up a little so we removed the slide sheet, I sat forwards under my own steam and the recovery team rolled it down to my waist then I scooted my bum up and they rolled the sheet the rest of the way out. This for me is a lot more comfortable and feels a lot safer than being rolled sideways. I took this time to relocate my only dislocated join (right ankle). After about 20 minutes I was stable enough to head back to the ward, I was made comfy and the nurse came to check on me, I declined pain relief and she left me in peace for a bit, the porters had made sure to put my wheelchair & handbag were within reach and the call bell and bed remote were by my hand.  I grabbed my phone and texted Addz and mum to let them know I was ok.

I didn’t feet at all sick or dizzy and I was in remarkably little pain. Within an hour I’d been visited by my surgeon and the anaesthetist who both checked I was ok and apologised for the ankle, I told them it was fine and that in all honesty it was probably the weight of the blanket that popped it out and not anything they did.

Addz arrived to sit with me and after I’d got the feeling back in my face and my IV had finished I had some pain killers and Addz helped me get dressed. I ate the raspberries mother had sent up and the nurse came to check on me, I was allowed to go home.

I went up for surgery at 1:40pm and was on my way home by 5pm feeling pretty darn good.

This for me was a real surprise, I was fully expecting to be broken, dehydrated and in pain but despite my worst fears I was actually fine. It just goes to show that good planning and advocating for what you need really does have a massive effect on treatment outcomes. Don’t be afraid to fight for what you need and don’t accept second rate care. I am really grateful that the hospital staff listened and that I’d taken the time to plan all of this in advance, hopefully some of this will give other EDSers’ / PoTSies’ a few ideas of what to ask for if they are in similar situations.

As always questions and comments are welcome

Ciao for now!


4 thoughts on “Surviving a General Anaesthetic with H-EDS & PoTS

  1. Sounds so much better than the, “Oh shit, what did you say you had?” response when I was under conscious sedation having pins put in my wrist several years ago. Even though I told the surgeon weeks before of my conditions. They didn’t help the course of my CRPS when they had to take the pins out weeks later in the OR when they did not believe me after I told them I could still feel my hand. Low and behold after a simple day surgery, I ended uo in hospital for a week. Lol. And the surgeon himself old me a week later he thought I had been discharged the day after.

    I keep advocating and talking to my doctors about what I have. Unfortunately now you get the few who no matter what you say they are on autopilot and dont listen. However, when you get service like this, you tend to want to stick with who treated you the best.

    Sounds to me like you should be requesting this anaesthesiologist all the time, or someone who works similar. 🙂 Privately hire her!

    1. I think I will definitly ask for her if I need surgery again! I really wish all anaesthetists were as good as her 😀 I can’t believe you’ve had such rubbish treatment from surgeons in the past. Fingers crossed if you need surgery in the future it will go better!! x

  2. I am so impressed at how well everyone worked together to be sure you got what you needed!

    Since I was dx’d with hEDS I’ve been getting dental work done at the nearest teaching hospital – it’s a huge change to have people who look up the diagnosis and conditions and ask questions! Last time I had a tooth removed the assistant dental surgeon told me he’d never heard of EDS – so he spent his lunch hour before my appointment Googling it and reading about it! (and I waited ’til I was home to giggle about the completely classic medical ‘I’ve never heard of it… go Google it’ response. (I was impressed he DID research it & was willing to admit he didn’t know much, and then to ask what else i needed!

    Hope you recover easily & with minimal pain!!!!!!!!!

    1. Thats awesome! I’m glad he went to the trouble to research even if it was just on google haha! I’m actually not feeling bad at all, a little tired and wobbly and I can only eat on one side but thats a lot better than I was expecting to feel! 😀

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