I really thought I had an honorary M.D. after my name by now. I’ve only spent 12 years of my life researching a misdiagnosis, and now a correct one—digging deep into medical journals with such frequency that I only speak doctor talk even if discussing the weather. Well, apparently I needed a good dose of reality.
After 5 months or so and two or three cancellations by the clinic, I finally had an echo of my heart and saw a real cardiologist. Omg. I know, I thought this was America—land of the world’s best healthcare system per the wealthy conservatives. What was this, that maple leaf country to the north or something? I had an echo twice in the past 10 years and was told I had trace mitral valve prolapse and mild tricuspid valve prolapse with regurgitation and a slightly enlarged heart chamber as a result. Well, apparently the cardiologists who interpreted my former echos needed a good dose of reality by way of more CEU credits.
Now, these are both consistent diagnoses with Ehlers-Danlos syndrome (EDS), not that I can find that information anywhere at the moment. For a broader description of the typical cardiovascular issues that can occur with EDS, click on this link and scroll down to Cardiovascular. Please keep in mind that Type IV (VEDS), which has a shortened life span usually due to cardiovascular complications, is included in this description.
Regarding cardiovascular issues, I know what a stroke is. I couldn’t claim to have an honorary M.D. without that basic knowledge. My grandfather who had EDS had one, but he was a chain smoker. His mother had one, but she was a rather zaftig woman from photos I’ve seen. I recently heard some random, first cousin once removed that I never knew of died of a stroke in her late 30s or so, but she’d been a former drug addict it seems. Did any of these women have EDS? I have no idea and I really don’t know my mother’s side of the family, with the exception of my late uncle and grandparents. Then, we have aneurysm. I always thought an aneurysm was when a blood vessel in your brain bursts due to a weak spot and then you go bye-bye. I do recall that it is a type of stroke: hemorrhagic stroke. Due to my very leaky blood vessels, I figured this would be my one-way ticket out of here.
So, what is an aneurysm really? According to the NIH:
An aneurysm is an abnormal widening or ballooning of a portion of an artery due to weakness in the wall of the blood vessel.
It’s before the artery bursts, if it does. Well, you learn something new everyday. In fact, I learned I have an aneurysm in my heart. It’s in the septum dividing my right atrium and left atrium, or the atria as the docs would say. I apologize that the septum isn’t labeled in the colorful image above; I think you need to dissect the heart to see it. The aneurysm is in connective tissue as it’s in a septum—what a surprise, but that means it’s not in an artery if it’s in a septum (see aneurysm definition). Odd? What about the deviated septum in my nose? Now, I always thought that was just a nuisance, but my snotty cousin had to get a nose job on account of hers. On to more pressing matters, I have a bulging balloon of who knows what size in some connective tissue dividing my atria. More precisely, I have a congenital heart defect called an interatrial septal aneurysm. What does that mean?
I don’t really know because even though the older cardiologist was nice and knowledgeable and had seen three—make that four—EDS patients in his entire career, he never mentioned the heart defect. Did it slip his mind? He even took me to the back to view my echo and was considerate enough to ask if I would be able to see it due to my keratoconus. I do okay with computer screens if I’m viewing larger images and he pointed out this and that and used doctor talk—oh, goodie.
The cardiologist did tell me my heart was fine, and while I don’t have any prolapses, I do have leaky mitral and tricuspid valves with mild regurgitation, but no enlargement of my heart chambers. He suggested we do an echo annually to monitor things and due to my leaky blood vessels, I need to stay away from aspirin and omegas and everything I already know turns me into more of a black and blue (and purple) mess. That sums up the consultation, which was very pleasant aside from the long wait. In the end, I happened to see mention of the heart defect in the report when I got home as the font was large enough for me to read.
Of course, I hit up the medical journals as soon as possible to figure out what this aneurysm was. Would my heart burst open at any moment? I did find a connection with EDS—how could I not? Here’s what I found, or rather didn’t find, as every site refers to atrial septal aneurysm, so what is the “inter” that is before “atrial” in my report? I did read a non-scholarly article that referred to this septum as interatrial, so are they synonyms? Where’s a medical thesaurus when you need one?
An atrial septal aneurysm (ASA) is a rare but well recognized and localized saccular deformity of the atrial septum that bulges into the right or left atrium with uncertain clinical significance. Although these abnormalities are considered clinically benign entities, they have been independently associated with ischemic stroke.
Ischemic stroke? I went right past the benign part. Wouldn’t you just get a hole in your heart if that thing ruptured? Well, that’s what medical school and those residencies are for. I do believe an ischemic stoke is what my grandfather had, not that it killed him. He just had a miserable downward slide until he died from pneumonia after his electric scooter tipped over, shattering his hip and leg due to early-onset osteoporosis—the latter presumably due to EDS. So, what will it be? An ischemic stroke or a ruptured aneurysm in my brain due to my weak and leaky blood vessels as presumed. Blood thickeners or blood thinners? The doctor said taking vitamin K would probably be beneficial when I asked, but what about the ischemic stroke risk? It’s the ol’ Catch-22.
Maybe I should just start smoking, but then I’d have to go out to the freaky parking lot with the wandering junkies and it’s nearly 120°F here and it doesn’t cool down at night. I possibly used to smoke years ago and may have enjoyed it. Something menthol-y rings a bell. Lately, cigarette smoke makes my nose stuffy and my eyes burn, not to mention all those wrinkles and other bad stuff, but my grandfather smoked like a chimney and lived to nearly 80. Oh, what to do when you can’t be healthy even if you try?