The HO was (hopefully) a False Positive.. And Some Random Thoughts
When I was first admitted to Mount Sinai, Dr. Stein‘s initial exam revealed limited flexion in my hips. The left was observed to be worse than the right, but both were suspected. I was sent for a bone scan and when the results were in, Dr. Stein indicated that from what was observed on the bone scan it was believed that I had Heterotopic Ossification of the hip (or just HO for short). Basically, bone was forming in my hip where it shouldn’t be.
I was put on Etidronate to attempt to slow or halt the HO, and then several weeks later I would be X-rayed to see if the formation had continued to the point where it was visible on a regular X-ray. The hope would be that nothing would show up on the X-ray – this would suggest that progression of the HO had been retarded. But the expectation was that something would be visible on the X-ray.
Well fortunately for me, nothing showed up. At all. Dr. Stein seemed encouraged, and indicated another set of X-rays would be taken in another several weeks. Those X-rays were taken last week, and again nothing appeared. I was taken off the Etidronate last week (which is good, since it was irritating my esophagus), and Dr. Stein has indicated he believes the initial bone scan was a false positive. Yes!! He wants to do another set of X-rays just before I leave, for precautionary measures, but he again seems confident that things are in the clear. Which is good, since I really didn’t want my hips to form a ton of bone were they shouldn’t. It would make walking quite hard in the future.
Today while sitting in the Guggenheim Atrium (the Times seems to like it) chatting with a few other SCI patients, I saw the derm resident from Friday’s incident walk by. I think she saw me, as she looked over several times. Now, I doubt she realized they never came back to explain their suspicions. But I was SO tempted to chase her down and ask why they never returned, why they never explained what they suspected, why they were putting me on the specific meds they did, or why they did not show proper respect to a patient.
But I decided to wait until I find the attending. Yelling at a resident is nothing special, but getting to point out a mistake made by an attending is something that I won’t be able to do for a decade come the start of medical school. So why not enjoy the fun while I can? 
I was watching a repeat of House, M.D. tonight and I noticed one of the hospital beds. It was the same type of bed as they have at Mount Sinai, by Hill-Rom. The odd part was, I saw it and my thoughts were, “that’s the same kind of bed I’ve lived in for two months.” It made me realize how much all the parts of hospital life have crept into what is accepted as “daily life” for me at this point. Leaving is going to be very weird.
I hope that once I’m out, I don’t constantly notice random things and have them remind me of my time in rehab. But I am fairly certain it will happen for a while.
9 comments
Hey Chris!!
I’m so sorry I have not been able to come down to the city sooner. I will be there on April 5th and I know you’re getting out soon, but I was wondering whether you were still up for visitors. If not, I completely understand, but I wanted to touch base and see how you felt before I’m out there. =)
I can’t believe this happened to you already two months ago. Does it feel like the accident happened forever ago to you? I’m glad to read that your condition is improving (well, that’s the general feeling I’m getting anyway?). I think this blog is a great idea, and I’m not surprised to hear that people find you inspirational. The way you’re dealing with the whole thing is just downright impressive.
[...] it looks like I wasn’t quite out of the woods as far as the HO goes. Just as the fevers last week from the infection were starting to trail [...]
Re upbraiding the attending: I think you’d like Ted Eytan’s post Friday, regarding the differential lengths of lab coats.
Let me ask a tough question: does Mount Sinai have a hotline (basically a *consumer* hotline) you can call if anything ticks you off?
Nicolas – it’s good to hear from you. It’s hard to say about whether it feels like forever ago. On one hand, it does feel like it was years ago – especially when I think about how far I’ve come in the past few months.. But at the same time, the past few months in rehab have flown by and it feels like I got here just yesterday.
Dave – I love the article. Even more than the lab coat length (which I happen to think is helpful, although most people outside the medical world don’t seem to be aware of) is the discussion of the EMR systems that are becoming commonplace.
Some large companies, e.g. Microsoft and Google, are vying to be the data holder of patient medical records in the future. While their goals are certainly more than altruistic, there are some valuable lessons that can be learned. The ability of patients to contribute to their medical records in a controlled fashion (i.e., they cannot alter test results or items left by a doctor, they can only add notes, readings and other information that is noted to be patient generated) and to review their details is essential. But security and privacy must be maintained and guaranteed. At the same time, healthcare providers must have unlimited access to this information in times of crisis. It’s quite a challenge to do all of this, and integrate it across differing platforms and hospital systems. But don’t get me started, I could write a huge post on this topic alone.
Oh, and as far as the consumer hotline, Sinai does have a mechanism for complaining via the patient representatives. The thought crossed my mind, but I decided I’d rather pick my battles a bit more cautiously.
If you haven’t been reading Paul Levy’s Hospital CEO blog, you’d probably like it. Same for his CIO’s blog.
Please see the vigorous discussion of the Google EMR proposal in the comments of Levy’s post.
Meanwhile, since 2002 I’ve been a vigorous user of PatientSite, that hospital’s secure email and partial-EMR system. Lucky me, my primary, Dr. Danny Sands, is one of the co-managers of PatientSite’s creation, and one of the pioneers of best practices for patient-physician email. It is *blindingly* obvious to me that this is infinitely more effective than not using email.
But there’s a lot of resistance. Over on the e-Patient blog two weeks ago there was another vigorous discussion about patient-doctor email. As I noted in a comment there, a key issue is that insurers won’t pay for time spent emailing (or on the phone for that matter), and some of us are working to change that, by documenting the cost reduction that accrues from better primary care (etc).
I do follow Paul Levy’s blog – not so much the CIO’s blog, though.
I’ve given the EMR issue much thought. Heck, I even wrote one of my medical school secondary application essays about it. I don’t claim to be an expert at all, and I like a lot of the comments in response to Levy’s post. But this is something that is going to be very complicated. And security must be factor number one in this case. Of course the real challenge is ensuring medical professionals have access to the information they need at the instant they need it, without all kinds of necessary encumbrances. The typical challenge of security.
Good words.
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