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I have this fantasy that someday I’ll wake up from a medical procedure and suddenly, miraculously, the persistent pain in my back will just be gone. Poof! It is no more. To be honest, I can’t even fully imagine what it would feel like, because it’s been so long since I’ve been complely pain free. I mean, my right side doesn’t hurt at all—the pain is only on the left side, and hurray for that—so I can kind of understand what no pain feels like. I just can’t imagine my whole body feeling that way.
Anyway, I have this fantasy—and a fantasy it shall remain, at least for now. When I woke up from the procedure yesterday, I blinked, slowly became conscious of my surroundings, and instantly searched out the pain. There it was, familiar as always, only even worse than usual because they’d just stuck a six-inch needle into my spine.
I kind of knew this would happen. Somewhere deep down I knew it wouldn’t be immediately better, even if the injection worked. I even knew, based on the pre-op research I did on the Internet, that it could take 72 hours to a week before the corticosteroid kicks in and starts working. (Not that my doctor even mentioned that, of course, and I didn’t get the “official” word on it until I read the post-op instruction sheet after the procedure.) But the point is, even knowing all that, I was still disappointed.
And now I’ve just heard from the hospital that the doctor wants to do two more shots just like this one before he even sees me again. So there’s yet another reason to hate the way modern medicine operates. Is it too much to ask that stuff like this be explained ahead of time? Two-way communication between doctors and patients seems to be dead, at least in my experience.
On the lighter side, I did have a funny little Dollhouse-like experience yesterday as I awoke from my valium-induced sedation.
Me: “Did I fall asleep?”
Nurse: “For a little while.”
Exact dialogue. I kid you not. Funny, yet kinda creepy.
I haven’t written much about my mystery malady lately, but suffice to say it’s still an issue—although much better than a few years ago. The weird headaches and pressure between my eyes still comes and goes, but I’m able to recognize what’s causing it (trigger points in my shoulders and neck) and how to treat it before it gets out of control. The lower back and abdominal pain remain an enigma, however.
Since January 2008 I’ve tried four different modes of physical therapy, had three MRIs or CT Scans, two X-Rays, and one spinal injection. My current doctor discovered two herniated discs in the process, but so far none of the treatments have done much good. Tomorrow, we try again with a different approach.
He thinks the back pain might be caused by trauma to some of the facet joints in my lower back. My symptoms match up well (but not exactly) with those of facet joint syndrome, so tomorrow I’ll be getting a “facet block” and a shot of steroids (cue the A-Rod jokes) to reduce the inflamation. The block essentially turns off the pain signals coming from the joints, so if it works then it will confirm the diagnosis. If not, it’s back to the drawing board again.
I’m kind of skeptical, because every time I think I’m on the right path I get my hopes dashed. But just imagine if it does work out this time. No more back pain? Or at least some kind of treatment plan? That would be incredible.
So, hope springs eternal.
I met with a nutritionist yesterday to help me figure out what I should and should not eat now that I’m down to just one kidney. She put me on an anti-stone diet, which means less meat (like, a lot less, unfortunately) but more dairy! I have it right here, a doctor’s note saying eat more cheese and ice cream. Yep, I think I can handle that. Doctor’s orders, right?
I had a follow-up CT scan on my abdomen yesterday to make sure the surgeon put everything back in the right place before he stitched me up. Normally CT scans are quick and painless, but this one was horrible for one reason, and one reason only: I had to drink two chalky, nasty, pasty, radioactive “fruit smoothies” beforehand. Just gross. Come to think of it, maybe that’s where the extra two pounds came from.
It’s been a month since the dingo stole my kidney. Lots of people have been asking how my recovery’s going, so here’s the sitch: I go back and forth between optimism and the blues. I’m still in a lot of pain and I’m still having difficulty walking, sitting, or standing for more than a few minutes. (Laying down’s not so bad.) But, I am better. A little. So that’s progress.
Next week I begin physical therapy on my back and legs. Think of it like this. For the last 12 months I’ve felt like there was a knife stuck in my abdomen all the way through to my lower back. It caused the muscles there to contract so tightly that, according to one doctor’s theory, they’ve wrapped around a nerve. Removing the kidney is the equivolent of pulling out the knife, but now we’ve got to fix the muscle problem.
I’m actually excited to start the physical therapy because I think it will really help. In the meantime, I still have three more weeks before I can go back to work. That’s frustrating, because I’d like to feel like a real, live, contributing member of society again, and three weeks seems like an awful long time to wait.
On the other hand, it’s great being home with Ethan and Penny all day. So there is a silver lining.
The other day I showed my seven-inch Frankenstein incision to Penny in hopes of getting a little sympathy. No such luck. She took one look at my stitched up abdomen and said, “Too bad they couldn’t have done some lyposuction while they were in there.” Ah, true love!
Yes, it’s true. The surgeon removed my kidney. It was a bit of a surprise. Apparently it may have been more than just the stones that were causing me problems. Turns out the kidney itself was full of scar tissue and inflamation from my many previous surgeries, not to mention the fact that the surgeon found the beginnings of lots of other little stones buried in all the kidney’s various nooks and crannies. If he hadn’t removed it there was a good chance I’d be back in a few months with a) more problems, and b) fewer surgical options.
Since I was obviously in no condition to consent to the procedure myself, the decision of whether or not to remove the beastly organ fell squarely on Penny’s shoulders. It was, understandably, pretty traumatic for her. But I really think she made the right decision, even if this doesn’t fix all of my pain issues—and there’s a good chance it won’t because there may still be lots of inflamation and scar tissue in that general area that wasn’t removed along with the kidney.
I’m okay with that as long as I can get back to pre-2006 pain levels. I’d gotten used to living with a degree of discomfort and I generally never let it affect me, so if the end result is that I’m still in pain—but it’s a more functional level of pain—then I’ll consider that a success.
It will be a while before I know for certain, though. For now I have to rest up and heal. The surgeon says I’ll be out of work for 3-4 weeks, minimum, while my body deals with the trauma of having a major organ removed. I’m in a very special kind of discomfort because the doctors spent a couple of hours poking around inside my abdomen trying to get at the stones before they made the decision to remove the kidney, so in addition to the giant seven-inch Frankenstein incision that needs to stitch itself back together I have to wait for my innards (innerds?) to heal up, too. (However you spell it, I can’t believe I just typed that word.)
Anyway, as the saying goes, the waiting is the hardest part. I’m basically housebound because I can’t drive, I can’t walk very far, and I can’t lift anything heavier than a bag of sugar. It’s creating a little bit of a strain at home because it means Penny has to do pretty much everything related to taking care of Ethan. Prior to surgery we had a good 50/50 partnership thing going. Now it’s way lopsided, and she’s still working two 10-hour days in Boston, and she spends a good chunk of her evenings working on email customer service stuff for her side job. It’s a lot to ask and she’s handling it all very well, but it kills me that I can’t help out more.
Not that I’m being a complete slacker! I do as much as I can. I play blocks with Ethan to give Penny a break now and then, I feed the cats, clean the cat litter, wash the dishes, make the coffee, heat up dinner, etc. But it’s not much.
Thankfully, our extended families are really helping, too. Our moms are watching Ethan twice a week on the days when Penny goes into Boston for work (normally one of those days would be my turn to stay home and take care of him each week). My mom is going out of her way to make dinners and give Penny a break for a few hours on some days when she just needs a little time to herself, and Penny’s mom even raked some of the leaves in our backyard. (Sorry, Eric, I think she was afraid of your leafblower—but I still love it!)
On the work front, I really, really wanted to get back to doing my job this week, figuring I could work from home and still be effective. I’m an editor, after all. I don’t need much more than a laptop and a phone to get my work done. But alas, my boss wants nothing to do with me till I’m 100 percent healed up and ready to come back all full-speed-ahead. I think I’m getting a bit of tough love here, which I respect and appreciate… but it’s still a challenge to feel so ineffectual in so many different phases of my life all at once.
Meanwhile, this blog entry has really gotten away from me! I didn’t mean to go on and on with all this wallowing. I’ve made it sound worse than it is. Generally speaking I’m in good spirits and I’m optimistic about a substantial, if not a full, recovery. If you’d given me that prognosis a few weeks ago I’d have gladly taken it, so really there’s not much to complain about.
And anyway, this is the last I plan to write about my recovery here until there’s something significant to report either way. This is going to be a fun blog, people. Fun! So no more wallowing for me.
Hi Blog Readers, Penny here. Josh’s surgery ended up being not what any of us—including the surgeon—expected. He will be okay, but I’m glad yesterday is in the past. He will be out of work for 3-4 weeks. If anyone wants to send a card, email me at robertsps at gmail dot com, and I’ll give you our mailing address.
Tomorrow’s the big day. I have to be at the hospital by 8:00 a.m. for the surgery, which is scheduled to start around 10:30. The procedure takes about three-and-a-half hours, and then I’ll be laid up at Lahey till Saturday or Sunday.
Of course, I have to miss the Red Sox victory parade because I’ll be under general anesthesia at the time. Thank god I already saw one World Series parade in my lifetime or I’d be pretty upset. As it is, I’m happy to record it on the DVR and watch it when I get home next week.
Anyway, fingers crossed that this will actually work.
Fourteen months ago, about three weeks after Penny and I finished a long trek across the volcanic highlands of Iceland, I woke up on a Wednesday morning with a headache and a strange kind of pressure-like feeling between my eyes. By 9:00 a.m. I was dizzy and just felt kind of strange, like my head wasn’t quite attached right to the rest of my body. And thus began the Medical Mystery Tour that has been my life ever since.
It’s both frustrating and frightening to live without a diagnosis. I’ve been examined by two ENTs, a dentist, a neurologist, and a neurosurgeon. I’ve been treated by a pain management clinic and a physical therapist. I’ve had elective nasal surgery. I’ve spent about $1,000 on failed acupuncture and massage therapies. I’ve had X-Rays, CT Scans, and/or MRIs of my head, neck, sinuses, and lumbar spine. They’ve looked for tumors, lesions, nerve damage, and god-only-knows what else. Nobody knows what’s wrong, and yet I’m worse today than I was the day I first woke up with that headache last August.
It’s changed who I am. I felt so alive when I was hiking in Iceland. I used to be happier, and more outgoing, and more adventurous. I traveled. I hiked. Hell, I even went hang-gliding once. I’d spend my early mornings and late nights enthusiastically working on my novel and computer game projects. I had a generally cheery outlook on life and always looked forward to the next day. Now it’s all I can do to get out of bed each morning.
I’m irritable at work. I have home-repair projects left half-done at our new house. I barely have the energy to help out at home, and I feel like a terrible excuse for a husband and father. I worry about what the doctors aren’t finding and wonder what my life will be like in a year, five years, 10 years, if this doesn’t get better. I’m so thankful Penny has been understanding and sympthatic, but I feel awful knowing this is all probably very frustrating and scary for her, too.
On Monday I met with a neurosurgeon at Lahey Clinic in Burlington to review the results of my latest MRI, this one on my cervical spine. He was looking for stenosis, a narrowing of the spinal canal in my neck, to possibly explain some of my weird symptoms. But the MRI was normal, which is both good and bad. No one ever wants to be in the position of hoping the doctor will find something wrong, but after a while you just want answers.
There’s really only one other avenue to pursue at this point. It’s a bit of a long shot, but it feels like my last, best hope right now. I have a pelvic kidney, which basically means my left kidney is in my abdomen rather than my back. It functions well enough, but I’m prone to kidney stones because it doesn’t drain quite right. I’ve had kidney stones since my freshman year of college and I’ve just learned to live with the pain. But the hope now is that somehow, some way, as unlikely as it sounds, my headaches, neck pain, and everything else is related to the kidney stones.
There are a couple of different kinds of kidney stone pain, actually: the sharp, horrible agony that comes when a stone is creating a blockage, and the dull ache that you sometimes get when the stone is there but isn’t in the way of anything. In my case, I don’t have any blockages right now, but my kidney’s in such a weird place that when I sit or lay down I’m putting pressure on it, and that causes me excruciating pain.
I currently have two stones, both small but apparently impossible to get at with the normal medical procedures like zapping with lasers or breaking up with sound waves. There’s the smallish possibility that the pain from the stones, which right now is just absolutely horrible, is a) causing all of my muscles to constrict, and b) somehow referring pain to other areas of my body, including my head and neck.
It sounds crazy, I know. It’s also the only explanation I’ve heard that accounts for my otherwise bizarre symptoms. So next Tuesday I’m having another surgery to try to finally, once and for all, get rid of those damn stones. My previous surgeries, which have all been of the minimally invasive variety, have ranged from mildly effective to downright failures simply because the stones are so hard to get at.
This next surgery, called a percutaneous nephrolithotripsy, is much more invasive. The surgeon will actually slice right into my abdomen and manually dig into the kidney to fetch the stones. But it’s also, hopefully, going to be more effective than the previous attempts. The surgeon himself isn’t terribly enthusiastic about his chances of finding the stones. He says there’s a “better than 50/50 chance” he can get them, but it’s far from a guarantee.
At this point I’ll take those odds. Even if it doesn’t fix the headaches and weird pressure sensations, if it alleviates the abdominal and lower back pain and just helps me resume a somewhat normal life then I’ll consider it a step in the right direction.
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