How many doctors does it take…? In support of a universal healthcare database.

“But you’re so young to have back problems!” – everyone ever. Yeah, well, it’s not my first choice, either.

(Warning: Contains bad Spanish.)

Sad disc is sad.

Yesterday, after 5.5 years with a herniated lumbar disc that had been mostly well-managed for the last couple of years–up until October 2014, anyway–I had a consult with a surgeon. Especially since it started to worsen a few months ago, I had been feeling that it was time for a change. I want to lead a more active life. I want to be proud of what my body can do again.

Most everyone you talk to about back surgery to repair a herniated disc (usually by way of a microdiscectomy) says they felt better as soon as they woke up. They talk about walking around the next day with no pain. And doesn’t that sound wonderful!

I waited and waited because doctors kept telling me I was “too young” for surgery or that “these things often resolve themselves” (though if a symptomatic case has ever spontaneously resolved after 18 months of treatment, I’d like to see the case study). But I shouldn’t have to dread getting out of bed in the morning because getting dressed hurts. I’m tired of disproportionate pain the day after any attempt at exercise that isn’t just walking. I don’t want to be punished by my spine for being the only young person on some buses and trains willing to give up my seat to an elderly or pregnant passenger. I hate the days when an overwrought stranger drops something and looks to me for help, not knowing there’s a back brace under my shirt or coat, and I have to look away and pretend not to care. I want to be able to paint my toenails and dance at friends’ weddings. I want to be able to go to movies and plays and sporting events and not be squirming in my seat the whole time.

I’ve made so many ridiculous adjustments to my life. I started using makeup removing cloths at night, even though they irritate my sensitive skin, because I wanted to avoid bending over the sink to wash my face. I have been on and off so many meds, I don’t even know what it feels like to just be me. Would I have more energy? I’m over being lectured by male doctors who think that if I just lost some weight by surviving solely on caffeine and peanut butter like they do, my back would feel better. (I’m 5’10” and a size 8. Throughout this journey, I’ve weighed as little as 136 lbs and I can tell you definitively that it’s not my weight that my back is mad about.) I want not to feel like it’s all in my head (even though repeat MRIs show that it’s very much in my lower back) when new fellows rotating through my doctor’s Pain Clinic think they know my situation better than I do. (“So, we don’t really know what’s causing your pain…”) I don’t want to be made to feel like an addict or like I’m risking my health when I ask for a refill of the pain meds that I only take when I can’t move otherwise and also can’t stay in bed cuddling with ice packs that day. (“Oh, I don’t prescribe Tylenol 3.”) I just want a chance at making part of my 20s normal.

So I went to the surgeon, mostly wanting to know what the risks of a microdiscectomy are and what the recovery process is like. HAH! For the first time 5.5 years, a doctor told me why I herniated a disc so young, why it’s not getting better, and what’s causing my pain. It’s called Bertolotti’s syndrome and it’s the result of a congenital defect. (Now, I can literally say BS runs in my family.)

Is it worse because it’s foreign? – Barbie, Royal Pains

It also means I’m not a good candidate for a microdiscectomy. Instead, he recommended a minimally invasive transforaminal lumbar interbody fusion. The recovery process is even longer than the name. While it would likely fix my pain for now, it would also temporarily ruin our lives and almost certainly result in problems with the disc above it. (He said the risk for problems with the adjacent disc is 3-4% per year, which means there is about a 57.5% chance of problems with that disc by the time I’m 50.)

Learning that an easy fix isn’t on the table for me was disappointing, to say the least, but I think the most frustrating part is that I have had countless xrays and several MRIs, and I have been to a sports medicine doctor, an orthopedic doctor, an orthopedic D.O. (who was an asshole), my mom’s then-GP (I lack the words to describe my very negative feelings toward him), an orthopedic surgeon, a rheumatologist (who was a creep), a physical therapist, and a couple of pain doctors AND NONE OF THEM CAUGHT THIS. If it had been on the table from the beginning, I wouldn’t have been made to feel guilty for my injury or its refusal to heal. I wouldn’t have been made to feel that the pain was all in my head. I wouldn’t have had unrealistic expectations of easy or even spontaneous healing. And I would have had an answer to “But you’re so young [so you must be faking or otherwise have less legitimate back problems than us old fogies]!”

My BS (just go with it) should have been an easy find and my mom’s lung cancer should have been caught sooner. I mentioned to my doctors that both of my parents had back problems, but the details of their cases were long since lost when mine started. My mom had abnormal imaging results in her right lung dating back to 2001, but no one ever connected the dots because she was seeing so many different doctors, especially once she was diagnosed with breast cancer soon after the first documented right lung abnormality.

A document from 2001 indicating abnormalities in my mom's lungs, particularly the right one that would later be considered the origin of her lung cancer.

A document from 2001 indicating abnormalities in my mom’s lungs, particularly the right one that would later be considered the origin site of her lung cancer.

Boyfriend has a pipe dream that one day there will exist a medical database that can catch patterns like these that doctors miss and make recommendations based on the statistical likelihood of any given diagnosis, kind of like a much-improved version of WebMD’s Symptom Checker. One abnormal right lung result after another in a long-time smoker? “__% chance of lung cancer.” Biopsy that shit. At least one parent of a healthy young adult presenting with sciatica has a congenital spine deformity? “__% chance of Bertolotti’s syndrome.” Check for a lumbosacral transitional vertebra. A Californian is presenting with flu-like or mono-like symptoms? “__% chance of Chagas.” It might be unlikely, but you shouldn’t neglect to consider it.

Unfortunately, for this dream to become reality, we would likely need single-payer healthcare in America because, conspiracy theories aside, only the government (read: not the private sector) should control such a database and its usefulness would depend on all medical records having a shared format (which, in turn, would likely require a law to that effect). But then there’s the not insignificant matter of hiring a competent architect for such a system, which doesn’t seem like a thing the public would have faith in any time soon, after the Healthcare.gov fiasco. (The bidding process for government contracts might prevent corruption, but it’s also proven very good at preventing competence.)

It’s frustrating to think that, with advances in data collection and data science, we already have the technology to potentially prevent physical suffering like my mom’s and mental anguish like what I’ve endured as a result of my back problem. In addition to helping patients, such a system would improve medicine by finding or supporting connections between symptoms that are often treated separately, at present, because most doctors are not Gregory House.

Here are some more gems from my interactions with medical professionals, in case you’re not fired up already:

Tech who did my first lumbar MRI: “So, a radiologist will have to give you your MRI results, but you seem to have a herniated disc, which means you might start peeing and pooping yourself.”
Mom’s GP, palpating my abdomen: “Don’t ever weigh any more than you do right now.” (I was well within the bounds of a healthy BMI.)
D.O. Orthopedist: “Are you married?”
Me: “No…?”
D.O.: “Oh, good. Your husband would hate you.” (Referring to the way in which he thought my back would affect my sex life.)
Resident/fellow/whatever: “What’s your weight?”
Me: “[whatever it was at the time, which was definitely healthy]”
Him: “You should really go to the gym. Even five extra pounds can make back pain worse.”
Me: “I walk a lot, but I can’t afford a gym membership, especially since I can only really use the elliptical machine because everything else is too high impact. It’s not like I can really lift weights.”
Him: “Walking isn’t enough. Lifting weights would be good for you.” (First off, assuming he was looking at my chart for my previous weight, which I don’t even think he was, he would have been wrong to assume that the weight I’d gained since switching oral contraceptives was weight I could lose again. Second, I would love to do some regular strength training, which is one of the reasons I started looking into getting surgery, because every time I’ve exercised with more than ~12 lbs, even with no bending or twisting involved, I have an awful flare-up the next day. I’m not paying $500 per year so I can get the same benefits as walking my groceries home, thanks.)

UPDATE: I had a follow-up appointment with the surgeon and asked him all the questions that Boyfriend and I had come up with since I’d last seen him. (We both really like him; it’s a shame we can’t drag him with us to our next residence.) The best news to come out of the visit was that he’s not worried about nerve damage and feels confident that my only risk going forward is pain. (Believe it or not, that’s excellent news!) As such, he cleared me to basically do whatever the hell I want, in terms of physical activity. He agrees that holding off on surgery for now is a good call, so that’s cool. He also explained what the risks of a total disc replacement would be in someone my age. Apparently they’re stainless steel, but there aren’t good longitudinal studies on how long they hold up and surgeons can’t move the blood vessels out of the way twice (because of scar tissue), so he doesn’t recommend it for someone my age, at this point.

Have any stories of things doctors should have caught sooner? Leave them in the comments! Have strong feelings about a unified healthcare database? Air those, too!

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4 thoughts on “How many doctors does it take…? In support of a universal healthcare database.

  1. Amen! We could be cousins! And a unisversal database would rock! But u r right…people will gladly tell everyone and sundry that they are going to the bathroom on FaceBook, but give info that could save their life???? As for interns/externs/ morons, I now want to tell them: ok, see how your coat is 3/4 length of my docs? Give me your advise when it’s full length. Till then, read my chart, listen to me and learn. –Renee s

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