AN ANEURYSM? ADD IT TO THE LIST.

Image Source: http://www.commons.wikimedia.org

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.

Source: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002109/

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. 

Source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3327030/

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?

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31 thoughts on “AN ANEURYSM? ADD IT TO THE LIST.

  1. dyspatient says:

    Well, yikes. That’s a good thing to know about I guess. Creepy though.

    • Yes. It’s freaky to know this thing has been with me since I was born, which further proves EDS was just slowly degenerating my body until it broke down. It was always there and I had no clue. Hence, add it to the list. What else can I do? 🙂

  2. Hi my friend, glad to see youpost again. Aneurysm heh? That is scary. Please stay on top of that the best wayy you know how.

    My dad still smokes. 😦 He will 80 in november. …. I had a stroke at age two. And when they put me on the lowest dose of birth control at ‘the clinic” my regular gyno took me off them quick like when he found out. I also smoked KOOLS from a pretty eacrly age SO I am at an increased risk. And yes, the death part doesn’t scare me. What scares me is stroking out and having to live in that state. 😦 for another 40 years or so. HUGS.

    YOu seem to be in pretty good spirits tho. So what, no parties with the wandering junkies in 100 degree heat ? Teasing!

    Be in touch! Hugs

    • Hey you,

      Thanks for dropping by (I need to do the same). Btw, I totally hide behind my humor and things are a complete mess right now. Yes, Kools, Newports… I was a light, off and on smoker until my early 20s–Benson & Hedges Deluxe Ultra Light Menthol 100s. Lol! Probably $10/pack now, which I also don’t have. I’d never smoke again, that was just my dry humor as I have no control over what is happening to my body. My grandfather never knew he had EDS (not that smoking would normally make it worse), and he was from that old generation where everyone smoked.

      So sorry to hear about you medical history and glad you’re OK. Yikes! I’m not afraid of death, either–it’s that horrible 1/2 alive thing my grandfather went though when he survived the stroke. My life is bad enough now with the chronic pain, etc. Anyway, I still can’t figure out how this thing in my heart can cause an ischemic stroke if it’s not in an artery and my doc suggested I take some vit. K (as mentioned), which thickens the blood (and I do have to stay away from blood thinners of any type due to my leaky vessels). Something in my new multi or the desert heat is making me a bruised up mess!

      Hope you are doing well… I will drop by in a bit!
      A 🙂

  3. I just hate how they can ignore or minimize things they can’t explain. What the hell? How do you get to trust caregivers now. I have to read about this. I’m worried because I don’t see how we can just leave it like that with EDS. So wait now, does that make you VEDS? From my discussions with Halifax, it would.

    • The doctor seemed very good. He wrote this in the report but must have failed to mention it–I don’t believe he was minimizing anything or didn’t know what it was as he seemed very knowledgeable. There was a mess-up on the part of this clinic (which has the most inept staff) so due to all the cancellations on their part, I had to keep rescheduling with different docs. I had my echo about 3 weeks ago and saw him last week, but he never interpreted the echo because no one told him I would be his patient. I heard him saying this in the hallway before he came in, but he was very nice and was irritated with the clinic, not with me. So, I was with him while he was interpreting my echo at the computer and typing up the report. He looked at everything with me on the computer and must have failed to mentioned the aneurysm–I’m confused there, but it does say it USUALLY is benign, just that there is a higher risk of ischemic stroke. I had the DNA test for VEDS and it was neg., but I obviously have an overlap due to the crazy, venous pattern and bruising, purpura, and petechiae and he was aware of that. An overlap isn’t the same as having VEDS and as mentioned, my grandfather lived to just shy of 80. I could call the clinic (part of a huge network so a total nightmare) to find out more from the doc, but I sort of don’t care. I just am not going to ever get rid of my pain, which is the huge problem, so if I can get out of here early (and not be a stroke survivor), then so be it. I’m sure that is not what you want to hear, but Gen and I are very different and I think her issues are actually treatable, which is very good.
      A

      • The clinic messing up – where you in Canada???? Does sound like here.
        If your gut feeling tells you he’s good, you probably know enough to assess that much I am sure. I just hope you’re OK and that no one in the past neglected (again) something that should have been taken care of. I just find that sometimes, they don’t think far enough – all that stuff about it being benign.

        And yes about Gen – I am hoping that it’s all treatable and that Toronto is right about he differences a surgery and weekly perfusions would make. The pain for now is not her greatest issue (as long as we don’t manipulate her physically), it’s the OI it seems. But already, the difference is remarkable. She still can’t walk down the street but at least she can stand for a few minutes without having to sit or anything. My biggest worry is that there are so many symptoms at such a young age – the back pain started at 5. I just hope it doesn’t escalate any further. I hear you and it scares me. Already, she is losing her hearing and suffers from bad tinnitus. I hope that will go away if it is indeed Chiari that is the cause for it.

      • Every clinic here is like that–that’s why I made the joke about Canada in the post! The other 2 echos were not done in cardiology clinics and they obviously missed the defect–I can’t find any evidence that this just shows up. It all points to a congenital defect. From the little I can find, the risk of stoke is low, but aspirin therapy is sometimes prescribed, except I can’t have any type of blood thinner due to my leaky blood vessels (and I get a stomach full of ulcers from aspirin). That was the Catch-22 I referred to in there. In the US, some ultrasounds (what an echo is) are interpreted by radiologist, and that may have been the case in the past and how the reports were incorrect in many ways. This one was interpreted in front of me by the doc, as mentioned. I probably would call next week just to figure this out, but I’m a complete wreck due to my cat with biopsy results coming in next week, so it will have to wait. Also, I did try to find more of a connection with EDS, but there’s so little on EDS. I did see case reports and it makes sense as the valve issues are common.

        Hope Gen will continue to improve. I feel positive and I think the tinnitus could be from the Chiari or instability issues. Let’s hope.
        A x

      • About the echo, Gen had hers done here by an amazing tech who was super knowledgeable. He has a degree in science, similar to mine, and then he has some type of high tech certification for cardiology. He invited me to sit in, pulled out this booklet with all the possible disease outcome for the various EDS types – which I swear were like a page long – and then he explained EVERYTHING to me on the screen. The exam took 45 minutes or so. He told me to get back to him and let him know about Gen’s diagnosis. Her heart was fine except for a small thing (benign – murmur) and I don’t even remember what that was exactly. I need to get back to him and I’ll ask for a copy of that page or pages regarding the various EDS cardiopathies. I’ll try to find his email or maybe I’ll stop by when I go in with my mom for her next appointment. I’ll let you know.

      • The techs here know nothing except how to do the test. You lucked out there. I’ve had a benign murmur for 10+ yrs.–that why I thought I had MVP like they had said, but no prolapse per the cardio. Just 2 leaky valves w/regurgitation and that’s what they hear (the click). It sounds the same in essence and is all consistent with EDS, although the mitral valve is more involved than the tricuspid (so, I have both).

      • I know I lucked out. Apparently he was trained in the south of the Province and then no one there could afford him. In the end, they needed someone for this remote area and we got him! They paid the big bucks for this guy in this remote, dying area of Canada!!!!! Can you believe it? Anyway, when he does Gen again I’ll be completely at ease with him. Hope he doesn’t move away! He was very interested in her case as he said his wife has all the same symptoms! Imagine.

      • That’s great and exactly how I feel when I find a good doc in this city! What are you doing here???

      • The is actually from Toronto and by moving here he was trained for free and then they couldn’t afford him! lol

      • Now I remember, it was the pulmonary valve in Gen.

      • Hmmm–no problem there. My lungs are always OK. Hope that’s not an issue…

      • I was just wondering that. Right now it isn’t for sure but she needs to be seen yearly now anyway.

  4. From a new blogging friend in Mumbai. Best of all, he’s offering his custom art for free! http://niranjanshukla.wordpress.com/2013/06/29/art-call-for-topics-for-a-cause/

  5. Hello A. Are you OK? 🙂

    • Hi Sheep,
      You must have intuition. I got very bad news last night and am a mess. I started a post about it and so much more, but it will take at least a week to put it together as I’m already at 2,000+ words and not done. It will probably be my last, or at least for a long time. Just watch for it (I don’t think you’re following me anymore, so thought I would let you know).
      I appreciate you checking on me,
      A ❤

      • Oh no A. So sorry to hear that. Again you know where to find me.

        I accidently unfollowed my favorite bloggers with my stupid phone because I pressed on a little minus sign i thought i had to set to a plus. I hope i restored everything… Sorry about that.

        I’m really worried about you. 😦

      • I’m trying to tackle this monstrous post that starts fine and then goes into a million tangents. I think it’s 4,000+ words and I can’t get the photos to upload correctly (I usually pull stuff from the web). It needs days of editing and then you’ll know the story. Don’t worry about the follow thing. I did that to you by mistake, too! I noticed my huge number of fake-followers had dropped and then saw your sheep image was gone. Not sure who else, but those people I do not need! So stupid–wish I could delete them. I even have some anti-Zionist crazy following me! Thanks for thinking of me. It means so much as I feel so alone. You really are more than a blogging friend and I won’t leave WP, just my blog for a while or forever–not sure. I’m very loyal, Sheep. It’s how I am so you won’t lose me unless you want to. I have your other spot bookmarked and cleaned those comments up (TMI with all the crazies).

        Such a terrible hand I got dealt again. Will try to post this thing by Mon. I have no more Dr. appts until then…
        A xo

      • It’s true, we can’t delete our followers. I tried this week but to no avail and I have these crazy marketing scammers following me – not sure how many.

        I was thinking last week that if I end up making money at one point, I will arrange something to meet you. 🙂 I don’t have many close friends but the ones I care about I really do.

        Am waiting for your post. Unlike you, I’m sort of restless and I tend to post and then edit the next time I read (bad). Do write me until then if you need to and do take care. xox

      • Thanks for what you said–I know you mean it. If I were well and wealthy, I’d do the same. I loved Canada before I got sick–I really wanted to go to Toronto, but I just had a layover there before Montreal. I don’t even know the E. Coast of the US–funny. Be careful with the spammers–I got a few that bypassed the spam-blocker on WP and as they came across as flattering and in good English, I approved them and then I got creepy e-mails to that address, which is now gone. You can Google what to watch out for, but sometimes you have to go with your gut (if the English in very poor, that’s a big clue), but some comments seem totally normal. They also hit up older posts more per a site I went to and it’s true. Just stuff I learned–it happens as your blog gets more popular and I actually do get a lot of search engine hits on KC, CXL, and EDS, despite the piddly WP following. Well, I write on 2 weird things in weird ways, so there you go. I never had the need to be popular. 🙂

        I’m a horrible perfectionist and things always need to be just so in my life. My posts are no different. I grew up in such a critical family that it’s just rote. This post is different and I don’t have a category for it. It’s like writing a life story in a post. It’s done, but needs editing as I re-read it. I also learned to type using a double space after periods (stupid teacher), which is the worst and I can’t re-train myself. It leaves weird indents on WP. Then I have to check at 100% as Chrome is blown up on my laptop and that throws it off, as well. The whole OS is blown up, so maybe it looks like a mess on normal computers. Well, you have no idea how late it is. I’m so achy and hungry and thirsty and tired. I have to get this right b/c I have no control over things right now… Maybe that makes some sense. This is what I can control. It will be done by this weekend as I’m satisfied with the post, it’s just the editing that takes time–especially since I wrote a novel and my body will pay the price tomorrow as it’s already a mess and today was just a mess! I just hope anyone will truly understand it.
        Hugs, A

  6. Hi A! Just catching up on my blog reading, sorry for the absence 🙂
    And sorry about the cardiology appointment. This sounds so much like my last one and all of the important issues they failed to mention to me! (Only found them when I received my medical records, which I ALWAYS ask for now). How are we supposed to trust our doctors when they’re constantly giving us reasons not to!? I would suggest getting the exact measurements of the aneurysm if you can, that’s one of the first things I was told to do when my aorta became enlarged.
    I wish I was born in Iceland, they have amazing health care and 81% of the residents there report to be in good health!!
    Hugs to you.

    • Hi Katie!
      Thanks for dropping by. Btw, my brother was just in Iceland–he left today for the Netherlands! I wish I knew how to upload the photos (most are upside-down), but it would be too cold for me there. It’s like Alaska–it was daylight the whole time they were there (and cold) and he came from Seattle! Haha. I do know about those studies (and with Crete, Okinawa, etc.). I just want to move to the Sahara, as the crazy, hot desert I live in feels so good on my muscles in the middle of summer, while everyone else is getting heat stroke. Well, I’m indoors almost all the the time. 🙂

      This thing with the report was just odd as I do get copies of everything since my GP is rather useless and nothing has just shown up like this in all these years. I’m currently playing phone tag with the nurse there (and today was a holiday), but I said I wanted to know if I had any increased risk of stroke over the general population w/this (not that the doc is very familiar w/EDS) and WHY he did not tell me about it. He seemed very thorough, so rather confused! I’m not sure if they actually measure these like with an aortic dilation (I did ask if that was okay and it was). I don’t see any references to size in the journals. He seemed to know the basics w/CTDs, so just confused as mentioned. Well, at least my valves are better than previously reported and really no change in 10 yrs, so I think I can cross that off the list for now. The rest of the body, now that’s a different can of worms…

      Thanks for your great advice as always. I really am not super worried, but the fact that my grandpa survived that stroke (awful) is not the best thought to have floating in my brain. I hate suffering of any kind.
      Hugs, A

      • Glad to hear you’re taking it all in stride, that is all very confusing!
        The desert would not be for me!! It’s been sweltering here and it makes me feel so sick. I like my weather right in the upper middle :p

        My grandpa also had a pretty severe stroke, he hasn’t and never will be the same since. It’s a horrible, cruel thing. I’m sorry you have to even worry about it 😦

      • I’m sorry about your grandpa and I do know what that is like as I lived with my grandparents for a bit afterwards. It’s awful. 😦

        The humidity is what kills my muscles, but 120 F (49 C) of dry heat–no problem and my pain goes down like with arthritis! 🙂 You don’t even sweat, or rather, it just evaporates. We’re from similar parts of the world (Seattle doesn’t get that hot and I know B.C. can vary like E. WA as I’ve been to E. B.C. before), but I literally cannot go back to humid, overcast Seattle. Strange little phenomenon.

        A

  7. cissyblue says:

    I wish I could just come over and play my guitar and sing beautiful old folk songs for you and Moush Moush, Maybe cook you something nice to eat. Wish I could just go “swoosh” like a magical faery and make all this sadness and fear just fly away like a bird out the window… and you would be all better, and your sweet kitty would look up at you all better, and then we could all just run through a beautiful meadow of flowers and be happy, like it never ever happened. I just wish I could do something. I love you with all my heart. You have my heart!

    • Ohhhh, this is why I call you good people. I love you tons, too. You calmed my mind for a moment with your comment. Don’t we all wish for a world like that: where we and our pets and our world is healthy? I so miss people like you. Nothing but scoundrels in these parts. I can almost picture your little spot in Tejas with your garden and animals. Actually, you remind me of some fellow expats from when I lived in Mexico years ago. Some had ranchos and one grew bamboo and I bought some from him for my business down there for the facade. It’s a simpler life where music is all around and you talk to people for hours, even if in Spanish. There isn’t all this stress and loneliness and people who can’t be bothered to help out or lend an ear. If I were better health-wise and the humidity didn’t affect my pain, I’d go back and pick you up on the way–it’s not like what you know in your area and you would be treated with respect. I had a friend there who had a beautiful voice and played the guitar and sang Spanish songs late into the night–I can picture one night in my mind right now like it was yesterday and even the song he taught me. Sigh… I’d love to stay up late listening to you sing with your guitar and so would Moush Moush. She loves when I sing to her and I don’t even have a good voice!
      Hugs!

  8. Jan says:

    I realize this is an older post, but wanted to share my experience. I have vascular EDS and also have an atrial septal aneurysm. It bows way over when my heart beats and the echo-cardiogram technicians always comment about it. My doctor said often it starts with a hole in the heart (birth defect) which could be undetected for many years, but fortunately in many children the body forms a membrane to close it. It’s not nearly as thick as the heart muscle, but seems to do the job.

    I do find that vitamin K helps with EDS in general and fragility of the vessels. If it gets too low I start bruising and get aneurysms in the vessels in my throat (feels like someone is throttling me). However too much is apparently not good for us, either, because my doctor said to keep my blood on the thin side. Because the aneurysm forms an abnormal shape, the blood can pool there and clot, then dislodge and cause a stroke.

    I have a fingerstick device and lancets (like you use to check blood sugar). If I stick my finger and the blood runs out like Kool-Aid I’m definitely low on vitamin K. If it forms a drop quickly but hold the shape, I’m good. If it hardly bleeds at all and I have to squeeze my finger to get a drop, then I probably have too much. There is obviously a correlation for me between EDS symptoms and low vitamin K so it is a catch-22. My mother had an intracranial hemorrhage (common with my EDS mutation) twice so I don’t want to let my clotting factors get too low.

    So far my aorta looks good (I’m 59). I try to stay active and eat healthy. Several years ago I developed severe pulmonary hypertension with heart failure. It started with a viral infection (cytomegalovirus) and was worsened by anemia. I will probably always have mild pulmonary hypertension now because of the damage to the pulmonary arteries, but I’m doing really well considering how serious it was. The pressure on the heart walls during that time was extremely high and the aneurysm never grew or leaked, so hopefully yours will also withstand any unusual circumstances 🙂

    • Thanks so much for your comment, Jan, and no worries on the older post–they’re all active and relevant. I don’t remember everything I wrote, but I have classical EDS/type II and was tested for VEDS based on minor criteria, but it was negative. I’m glad to hear that despite some setbacks, you seem to be doing relatively well at 59. Fingers crossed! 🙂

      The ASA is very odd, as it never showed up in previous echocardiograms and then as you probably read, the cardio never even told me about it–I read it in the report! When I called, he dismissed it as a benign finding, but it’s way too common in EDSers and it makes sense as to why. Per the hole in the heart, I researched that awhile back, too. It seems we all have them in utero and then they close before birth. When they don’t, we have a patent foramen ovale (PFO)/atrial septal defect (ASD), which is also what develops if the aneurysm blows and yes, it can lead to a milder ischemic stroke. I found it interesting that ASDs are in the criteria for Loeys-Dietz syndrome.

      I actually mentioned vitamin K to my cardio at that appt. last year. This is due to all the bruises, purpura, and petechiae I get. I can’t even take fish oil, so I figured going in the opposite direction would help. He thought it was fine, but knows very little about EDS. Then, I ran across an EDSer (hypermobility type) who had a major stroke from vitamin K and decided to pass. I do sometimes wonder if I have a blood disorder of some type, but I think EDS can really cause all my ugly spots based on studies I’ve come across and I can’t find a disorder that fits as my platelets are fine and I don’t bleed out during surgery or anything. If the medical care were better where I am, I’d probably look into it just to make sure.

      Anyway, thank you for sharing your story with me and my readers and also for letting me know that your ASA hasn’t gotten worse. I do horribly with surgery and I’ve been told the PFOs can develop and you don’t even know it. Yikes.

      Hang in there!
      A 🙂

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