Is My Illness My Fault?

Is My Illness My Fault?

For me, 2016 was the year of the surgeries and bizarre diagnoses. Three surgeries, to be exact, spanning over a period of four months. Once the surgeries were over, I thought that once I had an adequate recovery period, I would be back to normal. I’d be able to return to work, from which I’d had to take an extended leave of absence, and I could put the entire year behind me as a gargantuan fluke.

But it was not to be. Almost exactly a month to the day after my third surgery, I started experiencing symptoms that very quickly led to a diagnosis of postural orthostatic tachycardia syndrome (POTS). The tachycardia (rapid heart rate), shortness of breath, and presyncope (near fainting) were being caused by moderate hypovolemia (testing revealed my blood volume to be 18% below normal) and severe venous pooling (35% of my blood volume was pooling in my lower extremities; this number should be 5-10% in a normal person with quick resolution within two to three heartbeats).

Why did this suddenly happen? POTS has been linked to certain autoimmune diseases (including celiac disease, just my luck) and has been noted to occur following such events as pregnancy and trauma. However, medical science does not yet know why POTS happens. So what was going on with me? When I asked my cardiologist this question, he said, “I think it’s because of everything that happened to you last year.” In my case, he was referring to the three surgeries and resulting 7-8 hours of anesthesia my body was put through.

Having POTS is horrible. So much for going back to work; I’ve had to leave my job as a result of my symptoms. We routinely have people jump ship, but as I like to say, I was thrown overboard. If I thought 2016 was bad, 2017 has reached a whole new level of bad.

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But would the alternative have been any better? If you want to be technical, these were all elective surgeries. But what may have happened had I decided against the surgeries?

Surgery #1: My first surgery of the year, in July, was to investigate the cause of severe pelvic pain that had arisen in the months since my excision surgery at the Center for Endometriosis Care (CEC) in Atlanta, which was in October 2014. By April 2016, I was on some intense painkillers, but they weren’t doing enough to quell the pain, so I knew something was really wrong and needed to be investigated. We returned to Atlanta for this surgery because I don’t trust anyone except Dr. Sinervo at the CEC to perform surgery on my pelvic region. We were going based on the assumption that I had adhesions, or scar tissue, that were causing my organs to stick together, which is a common post-op complication of pelvic and abdominal surgeries. It was discovered, however, that I had no adhesions, but a broad ligament hernia (basically a hole in part of my pelvic sidewall). My right ovary kept popping into the hole and twisting, causing intermittent ovarian torsion, which cut off the blood supply to the ovary and was extremely painful. (Think of it as your ovary having a heart attack- the tissue being starved of oxygen and beginning to die is what causes the pain.) My bowel was also getting caught in the hernia.

Time under anesthesia: approximately 1 1/2 hours.

Alternative Outcome: If I hadn’t had the surgery, I’d obviously still have the hernia and be in significant pain from the ovarian torsion. At some point, I could have lost the ovary, because ovarian torsion is actually a medical emergency (that, based on the onset of my pain, I had been dealing with for at least 11 months prior to the surgery without knowing it. Oops.) And since the hernia was also compromising my bowel, I could have wound up with a bowel obstruction, which could have led to bowel perforation and then peritonitis and possibly death.

Verdict? I made the right decision in having the surgery.

Surgery #2: In March 2016, I was diagnosed with a prolactinoma, which is a benign tumor on the pituitary gland that oversecretes the hormone prolactin. First line treatment is oral medication, but after four months of hell, being unable to tolerate the side effects, I was allowed to see a neurosurgeon to discuss surgical removal. I had the surgery in September and the tumor was successfully removed.

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Time under anesthesia: approximately 4-5 hours.

Alternative Outcome: If I hadn’t had the brain surgery, since I can’t tolerate the medications, I’d have a steadily growing tumor in my head that, due to proximity, could easily wrap itself around my carotid arteries (the black circles on either side of the pituitary gland in the scan above) making it even more dangerous to remove. And/or the tumor could impinge on my optic nerves (above the pituitary gland) causing me to lose peripheral vision. Not to mention the continuing headaches and dizziness. And no baby, due to the high levels of prolactin suppressing the hormones needed for ovulation to occur.

Verdict? I made the right decision in having the surgery.

Surgery #3: Because I have the worst luck, a week before my brain surgery, on pre-op imaging, it was discovered that I had an aneurysm in my carotid artery, right next to the tumor. The surgery was almost canceled, but after consulting with a neurovascular neurosurgeon, my neurosurgeon was confident that he could safely remove the tumor without rupturing the aneurysm and causing me to have a stroke. In November, once I had reasonably recovered from the brain surgery, I had a stent placed to block off the aneurysm.

Time under anesthesia: approximately 1 1/2 hours.

Alternative Outcome: If I hadn’t had the stent placed to block the aneurysm, I would just be biding my time until it could possibly burst one day, definitely changing my life or even ending it. My husband, who works in the emergency department, says the worst cases he sees are the brain bleeds from ruptured aneurysms (or various other medical causes, such as anticoagulants.) He hates them with a passion because there isn’t much that can be done to treat them and a return to normal functioning is almost never possible.

Verdict? I made the right decision in having the surgery.

So it seems I made all the right decisions, given the possible alternatives. I made the decisions that I thought would fix me, make me normal again, and get me back to work.

Leave it to me to wind up with, all things considered, a rare complication of anesthesia, since that’s what we’re going with as the cause of my POTS right now. Maybe the POTS specialist neurologist I see in five weeks will figure out something else (which would actually make me feel a whole lot better about this whole mess.)

But I’ve done what I can. I’m continuing to do whatever I can to help me get better, if that’s even possible. Maybe it’s not. In which case, the remainder of my life is going to be interesting.

Is there anything else I could have done to prevent this?

I doubt it. I never even knew this was possible.

So while the decisions to have those surgeries were mine and therefore it was my decisions that led to me developing POTS, I think my life would have been just as bad, if not worse, as it is now had I decided against having the surgeries. It may be my fault…but this is probably, sadly, the better outcome.

💛ribbonrx

0 thoughts on “Is My Illness My Fault?

  1. All things considered, I’d say you made the right choices, too. And, they don’t seem like they were easy ones. So, high five for being a bit of a badass.

  2. Please look into getting evaluated and diagnosed with Ehlers Danlos Syndrome. That might explain even more. Best of luck, hope you can get your symptoms managed better.

    1. Thank you, Sandra, I’m so glad you brought that up! I haven’t mentioned it in recent blog posts, but I did see a geneticist in February who diagnosed me with an “unspecified connective tissue disorder.” He wasn’t willing to make the full leap to a hypermobile EDS diagnosis. 🙄 But based on the new 2017 classification criteria, I fall more along the lines of a Hypermobility Spectrum Disorder (HSD) than hEDS. I’m not too sure there’s anything I can do about it, though.

  3. I know how difficult it is not to blame ourselves for our illnesses. I spent a long time trying to place the blame on myself. In our suffering, we want an explanation, and sometimes we can’t find a direct cause-and-effect relationship with one thing and our pain. For me, this is crazy-making. Infuriating! I would contend that even if your surgeries proved to be fruitless and even unnecessary, there is no way that your illness would be your fault. Sitting in the tension of not knowing the direct cause of our pain can sometimes open up space for grief, which is entirely appropriate and necessary. You are brave, and you are a fighter, and this is not your fault. And it sucks. I’m so sorry.

    1. You are so right! The last year and a half has been a long grieving time for me. This week is especially bad, but that’ll be another blog post in a few days.

      It’s so easy to place the blame on ourselves when that’s sometimes what we’re led to believe by others. The POTS is especially hard because I think out of everything I’ve been through, this is the illness everyone around me understands the least. It’s the one that finally led to my job loss; I have no idea what my former coworkers know or think about the illness and the situation, which is hard on me. Some of my family haven’t made much of an effort to understand the illness. I guess I just feel like I’ve been given up on. 😕

  4. I agree with everything that lilchareli has said. I don’t think that you should blame yourself for your POTS. I’m also always amazed by how you’ve handled all your health issues. Your strength and perseverance are admirable.

    It’s interesting to hear you say that people least understand POTS out of all your illnesses. I’m always thinking about how no one understands the severity of my condition and how disabling it is apart from my parents who take care of me and who’ve seen it all because they live with me.

    1. Thank you, Kirsten. I don’t feel strong at all, though. I’m just existing.

      I’m not sure why my husband is having a hard time wrapping his head around the POTS. But he’s very scientifically-minded and has to research things in order to understand them, which he apparently hasn’t had time to do in the past 6 months.

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