When Someone Turns On The Light At The End of The Tunnel

A smidge over 22 years ago, while home on leave from the Navy, I was riding my motorcycle down a rural Wisconsin highway at night when I hit a fog patch. Coming at me was a car driven by a woman very new to America, and the whole driving thing. She was understandably anxious about the fog, and slipped off the road, putting two wheels onto the soft shoulder. She panicked and over-compensated. She swung all the way over to the left, and was wrestling the car back to the right when she met me.

I never saw her, but she sideswiped me on my right side. My crash bar dug into the front fender and started peeling the metal back. My right knee was right behind all the torn metal. The term ‘Laceration’ just doesn’t do that wound justice. I also had my right arm bend backward and shatter the elbow, as well as landing on my left arm, shattering that humerus.

All things considered, after getting scraped up off the highway and spending over 6 hours in emergency surgery, I’m doing alright1. Some sensory nerve damage on the left arm, and the right elbow doesn’t quite extend fully. A whole lot of bitchin’ scars.

The right knee, however, has always been problematic. The tendon that connects my thigh to my shin was shredded, and the cartilage in my knee was damaged. Early on, getting my knee to bend was a challenge, but these days, I can almost sit on my ankles.  I don’t walk with a limp, most days, but the knee is unstable, and will, often without warning, fold on me, or just swell up and hurt like hell for a day or two because the weather turned suddenly. Going for a hike is usually doable (although I always carry a stick with me), but I’ll pay for it for the rest of the week, because the knee suffers from osteoarthritis. My cartilage is, as one doctor described it, shag carpeting, when it should be smooth as silk. When I climb stairs, it sounds like popcorn. Aside from biking, kayaking, or swimming, I can’t do most athletics. No running, or martial arts. Cross country skiing is OK, but downhill is right out. You get the idea.

As you can imagine, this isn’t fun.

Over the years, I’ve tried cartilage boosters like Synvisc and Orthovisc, but those only work until you experience pseudosepsis, which I did, with both of them. They can try steroid injections, but that is a short term fix with long term downsides. I’m way too young for a total knee replacement, as they won’t do those before the age of 60, because the artificial knee has a life span of less than 20 years, and they don’t want to install a second one. So for the past few years, what I’ve been told is, lose weight (I can stand to shed 40 lbs, but that is hard to do when you got a trick knee), and take Advil if it hurts.

Until today…

A coupe of weeks ago, my wife was talking to her physical therapist (back injury), who mentioned to her that she had a patient who had bad OA in the knee, but underwent a Stem Cell treatment, and was feeling a lot better. So she got the doctors name who did the procedure, and I got an appointment with him. He took my history, did his exam, and I got to tell you, he turned on a light that I was starting to wonder if I’d ever see shine.

See, cartilage is a tricky thing. We can grow it easy enough, but we can’t get it to stick to bone. Usually when you hear of someone having cartilage replaced, it was in between some metacarpals or metatarsals, where the cartilage can be held in place by the muscles and connective tissues. But knees are pretty open, and a new pad of cartilage would just float around, causing trouble. My understanding is, when we are in the womb, our whole skeleton is made of cartilage, and then it begins to calcify, except for the ends, where it says soft and squishy, to act as a bushing. This is why it’s hard to get it to stick, because it isn’t a bushing, it’s the original bone.

So for the past 20 years, I’ve been told that an answer is just 5 years away. It’s like Fusion power. But a few years ago, they tried Stem Cells, and damn if they don’t seem to be working. What they do is a blood draw to collect platelets, a bone marrow aspiration to get Stem Cells, and a micro liposuction2 to get some more Stem Cells, and some fat to act as a binding matrix. Then they separate the bits they need, load them into a set of syringes, and inject them into the knee. The fat acts as the matrix, the Stem Cells figure out they are in cartilage and begin to grow, and the platelets cause an inflammatory reaction, which apparently lights a fire under the Stem Cells.

Start to finish, 75-90 minutes. The doctor said it takes about 3 months before you really begin to notice, but most people report things to be 50%-80% better after a year. No word yet on how long it lasts, but it’s been out there for two years now, and no one has had to come back for another treatment yet. Insurance won’t cover it yet, and the cost is $6,200, but I have to tell you, after 10 years of bad OA in the knee, $6,200 is like, “Oh, is that all?  Shit, let me write you a check.”

I mean, hell, this is what HSAs are all about, right? (PS, touching on the political, why in the Nine Hells are HSAs limited to $5K? There are tons of medical procedures not covered by insurance that cost way more than $5K, and most are not boob jobs or tummy tucks.)

I’m kind of in a daze, actually. Like, at any minute they’ll tell me I’m not suitable, or something. To be able to actually run around with my son and not go limping back to house every damn time. To be able to hike without fear of being hobbled for a week after. To just not be in near constant pain. I hope insurance starts covering it soon, because while I can afford to pay this out of pocket,3  I know there are lots of people with this kind of damage – athletes, laborers, lots of vets – who probably can’t afford to drop $6,200, especially if it can save knees from having to be replaced down the line.

Anyway, it’s nice to see the light, and know it’s not an oncoming train.Notes:

  1. Two things helped this; I had just passed the physical fitness test for the Navy SEALs, and the Navy had me undergo 8 months of daily physical therapy (3 hours a day, that’s an order). When you do it right, PT can make a world of difference []
  2. No, they wouldn’t get more out while they were in there, I asked []
  3. I will be hitting up the VA about this, since it’s a service connected injury, and I doubt they want to be dropping $60K or more in 20 years for the full replacement, especially since I hear they do this treatment at Madigan []

Staff Writer

A Navy Turbine Tech who learned to spin wrenches on old cars, Oscar has since been trained as an Engineer & Software Developer & now writes tools for other engineers. When not in his shop or at work, he can be found spending time with his family, gardening, hiking, kayaking, gaming, or whatever strikes his fancy & fits in the budget. ...more →

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43 thoughts on “When Someone Turns On The Light At The End of The Tunnel

  1. A few years back we were hearing about stem cells as a magic bullet. That hasn’t happened, but there are a lot of less dramatic treatments popping up using them. Good luck, and good PT!

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        • Chemically treating illnesses is dramatically losing effectivity (put simply, we’re not coming up with as many antibiotics, etc as we used to.) in propping up stock prices.

          Stem Cells (and proteins, and biological based stuff in general) hold a lot of promise of new and interesting (and expensive) treatments (like Humera). Also, with the RW going nutso, there’s plenty of reason for Bayer and company to hype the everliving shit out of the only thing that might keep them in business in fifty years.

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  2. Good luck. :) Sometimes, despite all the crap, we do live in an age of miracles. And “Oh hey, we’ll just regrow some cartilage there buddy out of your own body, none of this transplant crap” is pretty darn miraculous.

    (HSA’s are limited because they’re not really intended to cover your entire medical costs, but to cover your deductible plus a fairly reasonable amount of out-of-pocket. Since they can be invested, inherited, etc, they wanted to cap it to prevent some fun possible workarounds for inheritance. It’s way too low, though given where HDHP deductibles have started to settle. Double what it is might be better. It’s not like many people max them out, though).

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    • I know, and I don’t even have to float in a bacta tank for it to happen.

      And yeah, $10K of HSA is probably more reasonable, even if it rarely gets maxed.

      I was hoping to get this scheduled straight away, but I have to deal with the VA first, and as usual, that will take time.

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        • Doesn’t do you much good when you’re 40, have a family, and your company says “We’re switching to all HDHP’s next year”. And then your first year on the plan is the most expensive year, medically, you’ve ever had in your life. By like a factor of 5.

          I ended up the year 13k out of pocket on a 10k out of pocket max, which was a lot more than the 6.5k maxed HSA I had. (Admittedly, that extra 3k was a fun in-network/out-of-network SNAFU that was enough our fault to make the bill stick).

          2015 sucked, is all I’m saying.

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  3. One thing I wasn’t quite clear on — would these be your own stem cells? It would seem so — and if so, how are they harvested? I’m not a scientist (of any sort, much less the kind that knows details about this stuff) but I thought stem cells in adults are created only in bone marrow. So that means you’ll have to get a bone opened up and some marrow harvested. Ouch.

    A small price to pay to eliminate a significant pain and impairment for the rest of your life, I’m sure — but for those who have ethical freakouts when stem cells are mentioned with respect to medical procedures, an assurance of sorts that people will not be playing with these basic building blocks of human life casually.

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    • Yep, mine, my own, my precioussss stem cells.

      They do a bone marrow aspiration from my hip. They don’t need a lot, so it isn’t a large procedure. I’ll be awake for all of it. They’ll give be some local anesthetic, but only in certain areas, because anesthetics are toxic to stem cells, so they can’t be present at the harvest site.

      It’ll suck, but when you live in near constant pain, you develop a hell of a tolerance for it, especially if I know it’s coming and can kind of prepare myself for it mentally.

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    • The particular cancerous thingy Kevin Drum has required them to harvest stem cells — they did it by pumping him full of a drug that increases stem cell oroduction, and then basically hooking him to a machine that would pull blood in, filter out the stem cells, and shove it back in his body. Sorta like dialysis, really.

      He had multiple sessions of that. I think they needed a good amount, and it was safer (and far less painful) than getting enough via bone marrow. (The drug has some side-effects, so I’m sure the trade off varies).

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  4. I’m really glad it seems to be working out, and I hope you get a real improvement. I know what you mean about “when you live in near constant pain”. It actually took years to figure out that I have a high pain tolerance, because I just thought it was that awful for everybody.

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      • Yep. I had a sister who can and has broken bones without really being bothered, another sister who is immobilized by a sprain. The physiology of injury is really different between them, not just the “toughness factor” or whatever.

        (Also, pain threshold is separate from pain tolerance. Low pain threshold and high pain tolerance was my fun combo. Doesn’t mix well with chronic pain in terms of getting help, though it does mix well in terms of living an active life compared to others with my set of chronic illnesses.)

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          • Sorry, I’m not sure I understand the question. Which “that” are you referring to?

            … or maybe you’re using “sensory processing” as a term of art / childhood development as opposed to just the plain sense of the words? Like, you’re talking about sensory processing disorder? If so as far as I know it’s a separate thing but might be a symptom of the latter – just not coextensive with it. If not, well, yeah, pain is a sensation so …

            Not trying to be difficult, I just went to respond to your comment and realized I didn’t really understand.

            If it helps, in my particular case, the low pain threshold, high pain tolerance, probably has to do with my abuse history. Though that really doesn’t explain why my other two sisters have a) high/high and b) low/low … not without getting into the psychology of Being The Oldest, anyway.

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            • No worries! I’m no expert but my quasi-informed opinion is that we now recognize sensory processing as a spectrum (or really a series of spectrums (spectra?)). So some people — like me — are more hyposensitive with touch… If I hug you I’m liable to squeeze real hard and not realize and if you hug me without squeezing real hard it will barely register. Others are more hypersensitive. At the extremes you may reach a point of being “disordered” (Mayo was tested and was that direction but not past the line). Then you have hearing (judging from your requests regarding the Leaguefest restaurant, you may be on the more sensitive side… I’m low here also) and other stuff.

              Some of this is genetic but because it is “wiring” things can be rewired — intentionally or otherwise.

              But I don’t know enough to know if everything relating to senses — such as pain — are related.

              I do know I often burn myself because the pain doesn’t register fast/strong enough to pull away before damage is done. And romantic partners (rightly) can complain I’m too rough… Esp if they are on the other end (as Zazzy was). “Stop squeezing me!” “I barely hugged you!”

              Then you have sensory seeking (also Mayo and I) but I don’t know exactly the relationship there.

              It’s really fascinating stuff especially the touch/physical because of how much of human interaction is physical and how folks with different wiring may feel like they’re speaking different languages.

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              • For what it worth, the “sensory processing” angle is part of what makes my life interesting. I can be in pain and not know it. Karen will look at me and ask, “Is anything hurting you?” because I look like I’m in pain – facial expression, how I’m carrying myself etc. Prompted by her, I’ll do a body scan, and sure enough, something hurts.

                If I see myself get hurt, or its chronic pain that I expect, the pain registers more clearly. Severe pain registers normally.

                The point is that the pain registers on my body without necessarily registering on my awareness.

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                • That happens to me too. In my case, just because (I think) I’m historically usually in pain, so if I had to pay attention all the time, I would never do anything except sit around noticing that I’m in pain.

                  But now that things are more copacetic, I have to literally check in / do body scan stuff. “Why am I making this face; oh, I think my hamstring hurts… Gee, self, hamstring seems to be hurting quite a lot. Maybe we should try one of the things we know helps. Starting with maybe unclenching it?” *sets timer to check again in 20 minutes and see if painkillers are needed*

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              • Well, ok, in that sense, yes, they’re related. People who are hypersensitive to touch, purely, also have low pain thresholds for external stimuli (burning, squeezing, etc.). But people who are hypersensitive to touch for other reasons (eg being on the autism spectrum) don’t always have low pain thresholds. And I don’t know if purely hypersensitive people also have low pain thresholds for other things. Don’t know how hyposensitivity works either.

                I only mind being squoze / touched when I am already in a substantial amount of other pain (which is more days than I’d like). If I’m not already in pain, I want all of the squozing :D. And sometimes even then as long as it isn’t a surprise and I’m in control of it. My stuff is very clearly very abuse-related (for reasons I’d rather not get into) so I don’t know that it is at all generalizable.

                Also, this is not terribly relevant, but my problem with hearing is literally only about processing and not painful discomfort. I can’t *sort* or tune out sounds unless the baseline is quiet, or some sounds are much louder than other sounds – in which case I automatically tune in to the loudest sounds. If I’m in a loud room, I can’t focus on the conversation in front of me because I can’t tune out everything else. If other sounds are objectively louder than my companions, it feels like I can’t *hear* the conversation in front of me or nearby because of the other sounds – I don’t have a filter. Meanwhile at a rock concert or a public square or with headphones on, I am perfectly comfortable with it being ALL OF THE LOUD. More comfortable than is good for my ears, probably, although my hearing is above average for my age. Meanwhile I know other people whose ears just *hurt*, or who feel dizzy or otherwise physically upset, if things are too loud.

                It is all fascinating, I agree.

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                • The filtering thing is a big one I think about with young children, both auditory and visual. While they all have different ways of filtering, we try to strike a balance between a space that is neither over nor under stimulating. My current school — with our Reggio inspired approach — puts even more emphasis on this, especially visuals. Many would call my classroom drab because it lacks the BIG and BOLD primary colors and BUSY BUSY BUSY bulletin boards of typical early childhood classrooms, what with all our neutral tones and natural materials. But the children fill it with color — literally and figuratively — and there is a palpable change in how they function there versus higher stim environments.

                  Even seemingly little things — like turning off the A/C when conducting meetings or turning down the volume and brightness on the doorbell-monitor system we need to keep in the space goes a long way towards situating the children for success.

                  Thanks for clarifying about the noise stuff. I know many people who struggle with loud noises. I have weird hearing — I like TV and radio loud to the point that people assume I have poor hearing, but then I’ll be the only one to hear the song quietly playing in the background of the store we’re in — but I really throw people off when I complain about silence. Even if you aren’t bothered by loud noises, most people understand that loud noises are bothersome; we all have a threshold at which high volumes are unpleasant. But most people don’t understand the inverse.

                  I’m a weird dude.

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          • Pain threshold is…weird. I mean for starters, there’s no real good evidence that pain is objective in the first place! (And some evidence that it’s not — that is, you break two people’s arms identically and there is no guarantee they will feel the same “amount” of pain, even before things like subjective pain threshold/experience in managing pain comes into it).

            There’s a reason doctors ended up using the chart of faces thing — it’s really impossible to measure pain in any clinically useful way.

            How all that’s tied up into processing of sensation, past experience, genetics — is unknown. It’s a pretty big question mark and it’s not like our bodies evolved with a fine-tuned pain response. Pain is the body saying “SOMETHING IS WRONG STOP DOING THAT FIX IT”, so really as long as the brain gets the message and has a strong incentive not to continue doing that thing, it’s all good. In terms of reflexive response, it doesn’t matter if that broken wrist is a 6 or a 9 on the pain scale — you’re not going to move your wrist if you can help it.

            (Fun story though: Those faces on the chart? My mom was in a great deal of pain but refusing to admit it, and the nurse basically badgered her into acknowledging it by pointing out the was saying “2” but the face she was making matched “6” and lying about the pain was just going to make the problem worse, not better. )

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  5. Good luck on this ! And let us know how it turns out.

    I am asking that for myself, as I too have and old car crash injury that is paying dividends 30 years later. I wrapped my dads RX7 around a drainage ditch at 90mph in high school and among other injuries shattered my No. 1 rib and left collar bone. Now I have OA in that area, getting injections to keep the pain at a manageable level. I too would like that to be a thing of the past.

    So, again, Good Luck and here’s to your future health!

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  6. It’s great when you find something that makes a real difference with whatever difficulty you have to carry around. Or when that difference finds you – sometimes it’s as much that as the first.

    So 22 years ago about – that’s about the time of my brain injury. I’m guessing you’re about 20 years younger than I am. Part of my auto-rehab was walking in the woods. For me it was great physically and emotionally – a kind of homecoming. I hope it can be that for you too.

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    • The lack of cartilage only comes to the fore when the knee is under heavy load (like climbing stairs, or doing lunges or squats). Biking is a different load profile on the knee. Of course, if my bike only had one gear, and I was doing mountain biking, it would suck. But road riding with 27 gears means I can dial in the load.

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  7. I will post updates as things progress. I see the VA next week to get the process rolling to find out if they want to do it in-house, or if they’ll reimburse me for it.

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