Malignant Hyper-whatia?

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There’s one side effect that comes with having muscular dystrophy that I don’t think a lot of people are familiar with. I think a lot of the population isn’t very familiar with the disease itself (which probably accounts for why people have said I have MS instead most of my life) but if they are, I think the common associations are the muscle weakness and the more obvious outward symptoms.

But along with all of that comes something called malignant hyperthermia. You can Google for the exact scientific definition but I’ll put it layman’s terms here. Malignant hyperthermia means that someone could die from general anesthesia. Not everyone has it. Some people with MD do and some don’t. There’s a test people can get to find out definitively (a test that definitely is not cheap).

When I was in high school, I had to have my wisdom teeth out. Most people just get it done in the oral surgeon’s office but because of my MD, I had to have it done in a hospital under the supervision of an anesthesiologist. They have to administer something called dantrolene first which relaxes your muscles and ideally lessens the effects of the general anesthesia. But only an actual anesthesiologist can administer it. Even with that, the anesthesiologist told my parents that the anesthesia still hit me so hard once he administered it that there was a pretty good chance that I had malignant hyperthermia.

We can have local anesthetic so at the dentist for instance, I can have Novocaine but not the laughing gas (which is a real bummer let me tell you). I’ve had to have two medical procedures over the last five years where I’ve had local anesthetic too. One of which was just a few weeks ago and is a procedure that’s normally done in a hospital fully under general anesthesia, but because of my malignant hyperthermia I had to have it done with local anesthesia only and in the doctor’s office and endure a whole lot of pain and frustration.

The thing that no one really tells you though is sometimes you can even be sensitive to local anesthetic. Both times that I’ve had local anesthesia (excluding at the dentist cause I swear that stuff does nothing to numb the pain), it’s been a really scary experience. Once it kicks in, my heart starts pounding about a thousand beats per minute, I start sweating, I lose color in my entire body and I get really nauseous. It sounds dramatic but I’ve literally worried I was going to die on the table both times I’ve had it. It’s very not fun.

So to put it in perspective, I found out during the procedure I had a few weeks ago that I have a physical reason other than my MD that would almost entirely prevent me from being able to carry a child full term. Of course I didn’t want to have kids anyway (reasons explained in a previous blog) and honestly, it was kind of relief to find out there’s another reason why I can’t because my body basically made the decision for, but it does raise some more problems. If I wanted to have a tubal ligation to make sure that I couldn’t get pregnant, I would have to go under for that. Obviously I did it when I got my wisdom teeth out but it’s such a big risk that I try to avoid it as often as I can. It’s a tough decision to make, not to mention I have no clue what the cost factor would be.

MD is so much more than just a physical strength issue. It has far reaching ramifications. For those of us who have malignant hyperthermia, it means we can’t just have simple surgeries or procedures. So even for the kinds of MD that aren’t life threatening, we can still have a very life threatening side effect from our disability.  I stress out anytime something is wrong health wise because I dread having to go to the hospital and potentially have to have general anesthesia. Hell, I’m even afraid of the local anesthesia now after the two not so stellar experiences I’ve had with it. I have a bracelet that I wear everyday now that alerts people to my malignant hyperthermia in case I’m ever in a situation where I’m unable to tell someone. After my car accident, I realized just how important that could be.

I’d also like to thank spellcheck for helping me correctly spell anesthesia and anesthesiologist because even after typing it about 10 times, I still couldn’t spell it correctly.

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2 thoughts on “Malignant Hyper-whatia?

  1. I remember our Day One, thinking that we were going to be learning an entirely new lexicon–words that had no meaning yet to us, but sounded super medical-ish, would become familiar. Here’s one I hadn’t heard yet, but provides a perfect example of what I feared that day. One has to be such an informed advocate for oneself, and it sounds like you are that. But it’s so scary, as you shared with us here. Thanks for sharing this–be well!

    1. Thanks Wendy. It’s true but also sad that we have to be our own advocate. I feel like doctors are paid to do that but we still end up having to do a lot of the work. I told 3 different doctors about my MH before I had this last procedure because none of them talked to each other (despite all being in the Kaiser network) and it being in my files that I have muscular dystrophy. No one even bothered to look. Then the doctor who did the procedure asked me if certain local anesthesias were going to be ok to use on me, like I knew that! I’m ranting at this point but you’re totally right and I never thought about all the medical terminology I know now because of having MD.

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