EDS and Surgery, freaking out!

Anhedonia2
Anhedonia2 Community Member Posts: 20 Contributor
in Coffee lounge

Sorry this is likely the wrong area to post this in but I've just freaked myself out majorly and need some reassurance!

I have EDS and I'm having surgery in a few weeks time, I've been trying to stay off Dr Google because I have a tendancy to spiral but my pre-op is tomorrow and it's scaring me, so I searched to try and understand what they may ask and I'm just seeing things saying that surgery is more complex and risky on people with EDS and should only ever be done as a last resort because it's riskier!

At my last appointment I mentioned having EDS to the consultant and he said it makes no difference and is unrelated so not needing to be known about??

Comments

  • Rachel_Scope
    Rachel_Scope Posts: 3,638 Online Community Team

    Sorry you've fallen into the Dr Google trap @Anhedonia2! I think we all do it and it always makes things out to be worse than they are. If your consultant knows about your EDS and said it doesn't make a difference I would just go along with that. Your consultant will have assessed the risks and if there was anything to worry about I'm certain they would have let you know.

    What can you do today to try and relax?

  • chiarieds
    chiarieds Community Member Posts: 17,402 Championing

    Hi @Anhedonia2 - I have the hypermobile type of EDS. Surgery if you have EDS 'may' be more complex, but it would depend on the type of EDS you have; the riskier part would only be if you have the vascular type of EDS.

    One of the issues with EDS is that there can be poor wound healing, but other than that the way a surgery is done would likely be the same whether a patient had EDS or not. If you need an incision, say again that you have EDS. When I fractured my hip nearly 10 years ago the orthopaedic consultant absolutely took this on board & made my incision (I needed a pin & plate inserted) as short as possible. Be guided by your consultants, but don't be afraid to ask questions either!

    Kindly let us all know how you get on tomorrow.

  • Anhedonia2
    Anhedonia2 Community Member Posts: 20 Contributor

    Thank you @chiarieds, I don't think I was ever told what type of EDS I have but I am hypermobile so I assume it is that. Would it be in my records?

    My appointment went well, the anesthetist was more concerned about EDS than the consultant, he said it needs more careful management with anesthetic as some people with EDS can be resistent and I've not had anesthetic before to know.

    It hasn't done anything to calm my nerves and has given me another thing to worry about but they were all as reassuring as they could be.

  • chiarieds
    chiarieds Community Member Posts: 17,402 Championing
    edited 11:38AM

    Hi @Anhedonia2 - certainly many EDS patients report poor results with local anaesthesia & epidurals. General anaesthesia, so long as the surgeon is aware of EDS, shouldn't be problematic.

    With local anaesthesia my penultimate dentist found one that continues to be completely effective, & when I had to have a small area removed from the roof of my mouth for biopsy, then I was given extra injections & the whole area was actually removed. This is all so much better than the ineffectual locals I'd previously had before I found out I had EDS & why these had been problematic! Not everyone with EDS will have this problem however.

    When I fractured my hip I went with the anaesthetist's recommendation to have a general anaesthetic instead, but this was more due to the fact that we have a family history of a neurological condition (Chiari 1 Malformation) which is associated with EDS in a few of us.

    I think the main things is that your anaesthetist is aware that you have EDS & will take every precaution to ensure you are pain free & comfortable.

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