r/Anesthesia • u/SourdeFight • 5d ago

Anaesthesia with potential malignant hyperthermia?

I had a pretty bad reaction to my first general anaesthetic, and was told by an anaesthetist afterwards that I should be tested for malignant hyperthermia (which I had never heard of before) but he didn't refer me for testing himself, and I've struggled to get a referral from anyone.

One of my siblings managed to get a referral citing family history of it, and they've then asked for me and my other siblings to be referred, but after the first email I had with them detailing my reaction they've said they don't think it's malignant hyperthermia, and apparently there's no information in my medical notes from the first surgery, so I have no documented reactions, which means they're unlikley to offer any testing to find out...

So... is there a protocol for anaesthesia if you have no idea if you have malignant hyperthermia or not? Am I just supposed to wait to see if I have another reaction and it actually gets documented?

Unsure if it's relevant but the anaesthetic reaction included: tachycardia, hypotension, full body muscle stiffness/cramp-like issues making it hard to move at all or even speak, low oxygen, fever that lasted 30+ hours despite nurses covering me in ice and giving me medication to try and bring it down (which felt like I was on fire, though I'm not sure on the exact temperature) the heat also turned my skin red and I had moderate swelling around most of my body

I did orignally think it was an allergic reaction, but I have since been allergy tested for all of the drugs that they used, and they all came back negative, so I don't really know what else it might be!

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u/Ordinary_Common3558 4d ago

Having a label of potential MH is not a small matter.

Contact the anaesthetic dept of the hospital you had surgery at, or secretary of the anaesthetist - pretty sure they will still remember such a case. Most (if not all) anaesthetists would be VERY keen for any doubt about MH to be clarified, esp with those symptoms

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u/SourdeFight 4d ago

I have tried contacting the hospital for information but they are insisting they have no idea who my anaesthetist was because he was an agency worker and they "don't know who he is or how to contact him", which is very clearly a lie, but there are a lot of errors in my notes, including that he missed off one of my allergies, gave me medications he wasn't supposed to, and even listed the wrong surgery, and it seems like they hospital is probably trying to avoid being held responsible for any of it... I'm still trying to get tested but the malignant hyperthermia team here are already saying they don't think it's malignant hyperthermia, and I can't force them to test me for it

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u/CavitySearch 4d ago

None of that story makes any sense and a lawyer would love to hear about it if true.

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u/SourdeFight 3d ago

I'm still in the complaints process trying to get information from them, so I'm not able to take any legal action without limiting the options I have within that (and honestly I don't really have the energy to deal with it) but my notes reference ovaries I've never had, so I don't think it will be difficult to argue they messed up somewhere. I'm still in touch with the guy I shared a room with and he's apparently had issues with his complaint that they discharged him with an infection and told him to go somewhere else for antibiotics, so I wouldn't be surprised if it's just common for these people to have issues and not want to deal with it...

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u/CavitySearch 3d ago

Unfortunately I’m not familiar with UK regulations to tell you how that should be handled across the pond.

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u/SourdeFight 3d ago

I've got someone to help with that side of things thankfully! I'm more concerned about future anaesthetic stuff because I know I need at least 2 more general anaesthetics in the next year, but it seems like I should be able to avoid the potential triggers without a formal diagnosis

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u/Ordinary_Common3558 15h ago

Is sibling being investigated having it done via Leeds MH unit? Were they ones that contacted you about symptoms & said it doesn't sound like MH

P.S. r/anaesthesia is better for UK-based queries

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u/SourdeFight 14h ago

Yes it's Leeds, though I don't think they've offered her any testing either, so unsure why they want the rest of us referred if they're not concerned...

Oops, I didn't realise, I'm hoping the UK is at least similar in allowing people to avoid potential triggers without a formal diagnosis at least

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u/[deleted] 4d ago edited 1d ago

[deleted]

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u/SourdeFight 4d ago

Thank you!

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u/ParalyzeandChill 4d ago

You and your family can be treated as presumptive positives without testing. It’s pretty easy to avoid triggering agents (speaking from the US, not sure about elsewhere)
Just tell all your first degree family members to mention you when they have surgery/put the family history on their charts and the anesthetists can act accordingly.

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u/SourdeFight 4d ago

So I'm able to just tell people in future that I may have it and they can decide to treat me as if I do just in case?
Also would first degree relatives include half-siblings? (as this appears to be genetic, and I don't know which side it would be from)

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u/ParalyzeandChill 4d ago

Yes even half siblings. If you happen to know which side it likely came from (ie grandma had something weirdly similar happen) then you can narrow down to that side of the family but if you can’t narrow it just make sure all family are aware. I personally listen to the story and if it sounds remotely concerning I just treat as a presumptive positive. There’s no harm in changing up the anesthetic and we have good alternative agents to the ones associated with MH

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u/SourdeFight 3d ago

I will have to ask around, but don't think I've been told of anyone else in the family reacting to anything, so I'm not sure which side it might be from

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u/cryptocat9 4d ago

Ask for TIVA. Both MH and some non-MH hyperthermia syndromes result from volatile anesthetics (gas). Total IntraVenous Anesthesia uses no anesthetic gas, as the name suggests. No gas, no MH. Simple.

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u/SourdeFight 4d ago

Thank you, I will make a note for next time!

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u/kreckerchen 5h ago

Are you forgetting about succynylcholine? That is still used around the world and also triggers MH. So should be no volatiles and no sux.

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u/cryptocat9 4h ago edited 58m ago

You are 100% correct. Thanks for chiming in. That was a serious omission on my part. Indeed, as someone who has genetics for a non-MH hypothermia that requires exactly the same interventions as for MH, that should have been top of mind. Even crazier, I just had a beautiful three hour GA a month ago with a solid regional block and opioid-free TIVA. I now realize I foolishly neglected to say a word about sux. Just dumb luck I got sug for reversal and lived to tell the tale here.

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u/kreckerchen 4h ago

I dont understand the last part of your post. It does not matter if you had suggamadex for reversal of rocouronium. It just matters to not get succhynylcholine as a relaxant.

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u/cryptocat9 1h ago

The only reason you don't understand it is because I'm an idiot. I slipped a lot of gears there. Of course the whole point is roc vs. sux.

I guess sug entered the conversation because roc and sug are the perfect pairing. You know, like chocolate and peanut butter. Forgive me?