Ehlers-Danlos Awareness Month – Fact #10-13!

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Fact #10: In many cases those with EDS do not respond to local anaesthetic properly or at all. This may mean complete failure of the anaesthetic to freeze the intended area, a much lower amount of numbness, or a much shorter duration of effect. (I am one of those people and this can result in some fairly traumatizing medical procedures – especially when doctors won’t take your word for it).

Fact #11: Possible cardiovascular manifestations of EDS include valvular heart disease (such as valvular incompetance) as well as artery dilation (the weakening of the walls of certain arteries, and/or veins, more commonly associated with certain types of EDS). For those at risk an annual echocardiogram is recommended in order to monitor the heart and aorta and to help prevent more serious complications by early intervention if needed.

Fact #12: EDS is an autosomal dominant genetic disorder (apart from types 6 and 7C) meaning if a parent has the disorder they have a 50/50 percent chance of passing it onto each child they have. Not everyone with EDS has inherited the disorder from a parent though. It is estimated that about half of those with EDS received it via what’s known as “spontanues mutation”. This is when the eds causing gene becomes mutated all on it’s own. But, once the gene mutation is in the family from then on it carries the 50/50 chance of being passed on. The gene can only be inherited from a parent, it does not skip generations.

Fact #13: EDS widely varies in severity and the onset of symptoms is often gradual. Oftentimes a diagnosis is only made when after many years of unexplained symptoms there become enough to connect the dots back to the disorder. Because of the limited awareness of the disorder among doctors the road to diagnosis can be agonizingly slow and frustrating. The link between symptoms can often go unrecognized entirely.

7 thoughts on “Ehlers-Danlos Awareness Month – Fact #10-13!

    • I’ve been put to sleep 9 times now and haven’t had any problems (knock on wood!!!). That is always a disturbing thought looming in the back of my mind but I guess when we have no choice we just grit our teeth and hope for the best lol! I put it as far out of my mind as possible because it’s too stressful to imagine.

      There are a few things you can do to minimize the risk of anesthesia awareness, like request that they don’t use a paralytic (so that if you are aware you can move to alert them) or if a paralytic is needed they tourniquet your upper arm beforehand so you can at least move it. They seem to be good with having thorough monitoring equipment at the hospitals I’ve been to.

      Seriously though, talking about it sounds like talking about something out of a horror movie! Frightening!!

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  1. Fact #10 is interesting. Thanks for posting on that. I haven’t had this issue with surgery where my skin has been cut (but had my corneas operated on while awake and possibly needed more drops than normal as I felt I was asking every 30 sec!). Reason I find this interesting is my doc is lost and prescribed topical Lidocaine for my chronic, myofascial pain–biggest problem. It’s like rubbing lotion on my body. Weird? I read that Lidocaine doesn’t work (somewhere), but X drug does, but found that X drug is not FDA-approved (but is in Canada, of course!!!). Really odd and irritating as I just get by with a TCA and a benzo that leave me at around a level 7, but really thing it’s a level 27 pain. Is this just with EDS or do you have these issues, too (not sure if you’ve tried the topical). I do recall that dental work has always been bad–not too many issues luckily–and I’ve screamed for more Novocaine. Hmmm.

    This is news to me so much appreciation, again! I love your blog. One day I’ll be a serious person with your maturity level instead of writing my bizarre posts full of dry humor. Ha! Don’t hold your breath.
    A

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    • Lol! I like the tone of your posts!!
      My eyes will not freeze with the eye drops. They work well enough for taking the pressure but any time I’ve had lazer procedures or anything it hurts, A LOT! They usually do the lens related surgeries while awake but they don’t with me because of the complications. They can freeze me for dental procedures but it takes a long time to work and a huge amount, it also wears off very fast. That seems to get worse the older I get. We aren’t sure if my mom does have a tissue disorder but I find it very interesting that she doesn’t freeze, at all.
      Topical lotions have never worked on me for pain, I’ve tried quite a few. Some of them give you that cooling sensation which feels good on sore spots but it doesn’t help the pain. Boo. lol

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      • Hmmm, thanks for the reply. Interesting about the dental. I never thought about it I read your post. My EDS grandpa (terrible name) and I–not sure about weird mother–had/have very hard enamel, which seems odd with a CTD, and I thought that’s why I could feel the drill. Makes no sense–has to be the Novocaine (what we use here) wasn’t working enough so if I ever need another filling, I’m telling them to give me a double dose.

        The Lidocaine cream was a prescription, which is why I didn’t get that, but now I do! Hence, loving your blog! Some CT group should pay you to write! Anyway, those OTC creams and whatnot are so worthless (hot or cold feeling). I swear that even those do a little more than this Rx I was given. So odd! I also don’t respond to narcotics, which is fine as they make me sick, but would be nice after surgery. So many oddities.

        I keep forgetting you have ocular issues, too. I had my epithelium lasered off for my CXL and I didn’t feel it (the pain starts after that), but when my surgeon manually rubbed of the epithelial cells (eeeww), I felt pressure and it was much worse in one eye. Then I’ve had my skin cut open or punch biopsies and don’t feel a thing until after. Odd again! No wonder some of us end up in the freak show.

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