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31st August 2017


My previous ortho doctor emailed me back.

In his words: “the Venn diagram for MHE [my disease, multiple hereditary exostoses] and hand is quite limited”. He has a suggestion of a tumor ortho to see at OHSU, but more as a reestablishment, in case I need to any other surgeries and for followups (my bone growths have a small chance of transforming into cancer, whee!) but probably won’t be helpful with this situation. I’m going to be emailing him just in case. The only hand tumor specialist that he knows is a doctor in New York City, so who knows when I’d ever get an appointment to see him.

I’m still waiting to hear whether my (ridiculous, worthless) insurance company to approve the capsule surgery, 10 days later.

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30th August 2017


My previous post didn’t go to my RSS feed. Hmm. Anybody know how to troubleshot that?

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29th August 2017

broken wings

Nearly a year ago, I fell. Missed a step and went down hard on my hand and instantly couldn’t bend my fingers (I wrote about that here). The ED sutured my bleeding eyebrow, took an xray of my fingers, gave me a split to wear which I wore for a couple of days and then stopped because it hurt and wrote me a pain subscription (which I took for a couple of days but then decided that the nausea was worse than the pain, so stopped and just bore the pain). By 10 days, I knew that something was really, really wrong. I saw my primary care doctor, got an x-ray, which showed again that it wasn’t broken, and a referral to an hard orthopedic and hand physical therapy – both which were booked up and I couldn’t get an appointment to see them for a month (I’ll save my rant about people believing that it’s an issue only for socialized medicine. It’s not).

So, six weeks after I fell, I saw the ortho PA, who wasn’t sure what was going on, but thought she saw a hairline fracture (there wasn’t), and that it should get better with time, and agreed that hand therapy sounded like a good thing. I started seeing the therapist that day. I used braces to stretch my fingers and when that didn’t work, I switched to a TENS unit where I sent shocks of electricity into my skin for hours a day. I dipped my hand in wax to mold my fingers. I saw some improvement, mere 5 degrees at a time, which would last a matter of minutes and then disappear, leaving my fingers stiff and painful.

After a month, I made an appointment with hand ortho again, this time with an attending that I’ve interacted with on rare occasions. Who basically implied that it was all in my head and I wasn’t trying hard enough. It was devastating. Never mind that I have a genetic bone condition, with a legitimate reason to have pain that could be contributing. Based on his non-diagnosis, my (utterly ridiculous and waste of money, again I’ll save you the rant about socialized medicine) insurance company denied the MRI, which I didn’t find out about until after I got it (I may have written a strong email to my doctor informing him that he would be calling and get it approved that day – which his staff did). The MRI showed possible reasons for the finger stiffness but nothing clearly conclusive. My doctor never contacted me about the results, and by this point, I had so little trust in him that I wanted him nowhere near my fingers.

So I did more therapy. I met with my therapist nearly every week. I underwent “iontophoresis with dexamethasone” which is a fancy term to say that my therapist used an electric current to try to get a steroid into the soft tissues of my fingers. Pain got a little better – I could put on gloves, I could (mostly) shake hands, but movement and stiffness didn’t. And then my therapist stated that she didn’t think more sessions would help. So I continued to do it on my own. I wasn’t perfect, but I tried to do the wax treatments once or twice a day. There was one week when I wasn’t working, so I dipped it 4-5 times a day. Nothing I did really made a difference.

I knew I needed to see a new doctor, but honestly, I was really burned with the experience. I felt completely dismissed. And I just didn’t have anybody else I trusted to evaluate and likely operate on my dominant hand. And trying to navigate the system – getting referrals, collecting my medical records, getting copies of the imaging – exhausting.

So I dallied and delayed.

And then I fell again. I went to San Diego to vacation with my college girlfriends and on our first night, walking back from dinner, I stepped off the sidewalk and (I think because it happened so fast) tripped on a water sprinkler that was jutting out of the ground, and went down. It swelled up and bruised pretty much within minutes.

IMG_1274 IMG_1276

Beautiful, right? I lost every bit of progress because the pain was unbearable to even attempt to bend, and once again, it was agony shaking hands and putting on gloves.

Finally, after the swelling went down, and I started crying to a colleague, because this has been utterly depressing and devastating and I am not dealing well with it, he recommended one of the hand plastic surgeons at OHSU, so I emailed him, and managed to get set up with an appointment last week. It was a better experience – he at least took me seriously and did a full physical exam, but he was also somewhat, I don’t know, a little victim-blaming? Basically, he thinks that my joints have stiffened, because of the initial immobility (which mind you I was instructed to do, and again I couldn’t get an appointment sooner and my therapist was terrified to work with me for days), and that I should have sought him out months ago.

He proposed taking me into the OR, putting me to sleep, and then forcing my fingers to bend – and then if that doesn’t work, he’ll open me up and lyse the joint capsules. Which may or may not work but we won’t know for months afterwords. So I agreed, and have been waiting for insurance clearance to schedule it – which probably won’t happen until late October or November.

He wanted repeat xrays though. Sure, fine, whatever. I got the xrays and then went back to work (it’s awfully fun trying to break away for a doctor’s appointment when you’re on service and your entire morning was interrupted for the eclipse).

I didn’t even look at them until the next day, when I was reviewing my patients’ images right before I went to bed. I actually read the report first, because I’ve already stared at my fingers a year ago looking for something wrong and didn’t think that it was going to show something new.

Screen Shot 2017-08-22 at 10.20.22 PM Screen Shot 2017-08-22 at 10.21.10 PM

Can you see it? The fracture at the base of my little finger, slightly displaced and extending into the joint. And at this point is over two months old and likely healed out of place. The fracture that I didn’t even know I had because why would this fall be any different than the last one?

(You can also see my shortened ring finger due to the short bone in my palm, and then many little bumps which are all of the bone growths that I have from my bone disease).

I broke down at work four times the next day, to colleagues that had known about my appointment and had asked how it had gone. I was a mess – honestly, I still am.

I emailed my new doctor, who felt that the treatment for the fracture (which would involve rebreaking it and putting pins in it) would be the exact opposite of what I needed to treat the joints and the stiffness, but again, he won’t know until after I’ve undergone the surgery of whether or not the fracture will interfere with my joint being able to bend.

So I’ve screwed myself over in so many ways and I may never have function of my fingers again.

I think one of the most frustrating aspects of this all, well, besides just the overall awfulness of having a hand not function properly, has been that I have been utterly without resources. In Utah, I had trusted doctors, who when they said I needed surgery or didn’t, I could take them at their word. They knew me, they knew my disease and how it manifested. And here, I’m seeing surgeons who have a passing familiarity with my disease. They aren’t even considering it as being a factor.

I emailed my old surgeon in Utah today, poured out my story in as few words as possible and asked him for a referral, either here or back in Utah (he’s not a hand surgeon. Hands are tricky and small and delicate). I don’t know if he’ll respond. I don’t know if it’ll make a difference.

I’m nervous about the surgery. I’m nervous that the surgeon will put me to sleep and my fingers will just move when they are relaxed and under a neuromuscular blocker and he’ll think that we’ve fixed the problem. I’m nervous that he’ll do the surgery and the fracture really will impact movement and I’ve just caused myself a whole lot of pain for nothing. I’m nervous that the little bone growths really are at the heart of all of this and nobody knows enough to fully evaluate it. I’m nervous that I’ll do all of this and it won’t do anything. I’m angry with myself, for not getting that xray after the second fall (it felt just like the first), for getting myself into this situation. I’m scared that I’m going to have a minimally functioning hand for the next 40 years of my life and what that is going to mean.

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