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.

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.

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.

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