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Echocardiogram and loose shoulder (Ehlers-Danlos Syndrome) watch

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    Hello,

    So I have Ehlers-Danlos Syndrome, and next Friday I have to go for an echo to get the heart valves and aortic root checked. This is fine, I've had ultrasounds of my pelvis and kidneys before so know what to expect. BUT I have to lie on my left hand side! Problem is, my left shoulder partially dislocates ridiculously easily (sneezing, slightly "off" posture, really stupid things), and multiple times a day. I genuinely cannot see myself lying on my LHS for 25-40 minutes without it slipping out of socket.

    Do I sound silly or like I'm worrying too much, or should I contact the cardiology appointment to warn them or just tell them on the day? Thing is, I HAVE to get this done because EDS can cause stretchy heart valves and aortic roots and I'm tachycardic a lot of the time.

    Sounds silly, but it's actually making me nervous.
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    (Original post by ChemicalBond)
    Hello,

    So I have Ehlers-Danlos Syndrome, and next Friday I have to go for an echo to get the heart valves and aortic root checked. This is fine, I've had ultrasounds of my pelvis and kidneys before so know what to expect. BUT I have to lie on my left hand side! Problem is, my left shoulder partially dislocates ridiculously easily (sneezing, slightly "off" posture, really stupid things), and multiple times a day. I genuinely cannot see myself lying on my LHS for 25-40 minutes without it slipping out of socket.

    Do I sound silly or like I'm worrying too much, or should I contact the cardiology appointment to warn them or just tell them on the day? Thing is, I HAVE to get this done because EDS can cause stretchy heart valves and aortic roots and I'm tachycardic a lot of the time.

    Sounds silly, but it's actually making me nervous.
    There's nothing to lose through telling them, they will certainly have had stranger questions! Even if there's nothing they can do if it makes you feel better you may as well make a quick phone call. I feel your pain with the shoulder, mine had been partially popping out of the socket for months and months, even doing simple things like rolling out of bed, and last Saturday it finally dislocated. They might be able to do something to support it? Anything to avoid a complete dislocation is worth it as the pain was next level tbh.
    I also have a suspected connective tissue problem and am having an echo for the same reasons as yourself tomorrow so I can sympathise with what you're experiencing.
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    Let them know you can't lie on your left, they should be able to work around this.
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    (Original post by plasmaman)
    There's nothing to lose through telling them, they will certainly have had stranger questions! Even if there's nothing they can do if it makes you feel better you may as well make a quick phone call. I feel your pain with the shoulder, mine had been partially popping out of the socket for months and months, even doing simple things like rolling out of bed, and last Saturday it finally dislocated. They might be able to do something to support it? Anything to avoid a complete dislocation is worth it as the pain was next level tbh.
    I also have a suspected connective tissue problem and am having an echo for the same reasons as yourself tomorrow so I can sympathise with what you're experiencing.
    I hope you get some answers soon, I'm sorry to hear you completely dislocated it! I also hope that the echo went well. Here's hoping they give us new shoulders (and joints in general), eh? :P

    Thank you both for your answers, I will give them a call tomorrow.
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    Good luck. Be sure to get comfortable and ensure they're informed, as they know what your coming in for they should be accommodating. Careful and slow when getting up and off the couch. Good luck! EDS is a pain as is, so just take your time and communicate if your getting comfortable etc. I also have POTS & Fibro so I have doubly careful. Xx


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