Whenever I see a post like this I am struck by the huge disparity in our grasp of (and ability to treat) different types of human ailments. Are you a tetraplegic? Don't worry, we will just literally rewire your nervous system to give you functioning limbs again. Do you have tiny tumor in your pancreas? Sorry, you won't know about it for a while, and when you do your only recourse is for a surgeon to cut out half of your digestive system and then we'll inject literal poison into your body with the hope that you die in 1 year instead of 3 months.
I know, there are plenty of reasons that certain diseases have been harder to crack, but the disparity always seems so striking. This nerve transfer study seems so incredible and futuristic, and yet there is still so far to go.
Our insurance agent had his arm in a sling a year or so ago when we went to talk to him. Routine surgery nicked a nerve and he lost control of his hand. Saw him a couple times after and sounded like it was just something he'd have to live with.
Then we bought a house and were in to talk to him about insurance for that. His hand was working fine.
Asked him about it. Apparently they took a nerve out of his leg and put it in his arm. "Can't feel my foot, but that's a heck of a lot better than not being able to use my hand"
>Are you a tetraplegic? Don't worry, we will just literally rewire your nervous system to give you functioning limbs again. Do you have tiny tumor in your pancreas?
I find it humorous that you use paralysis as the 'don't worry' disease -- it's (quite literally) one of the least treatable conditions we know of, while simultaneously being one of the oldest recorded.
I get the comparison that you're trying to create, but paralysis (more specifically paralysis caused by nerve damage) is by no means a closed case -- and virtually no one (compared to the suffering population) has access to treatment options that change quality of life by any significant means.
Aside from those qualms I mentioned, I think that comparing a quickly-fatal disease (pancreatic cancer) with a set of conditions that shortens lifespan and decreases quality of life (tetraplegia) , but is generally a maintainable condition if acute treatment is survived, is a comparison built upon weak premises.
disclosure : I have a spinal cord injury at my C5 vertebrae. In Europe i'm a tetraplegic, in the United States i'm a quadriplegic, but by whichever lingo you want to go by i'm effectively uncured. My condition has remained unchanged since my injury -- so I definitely have 'skin in the game' on this topic.
'Don't worry.. .. give you functioning limbs again.' would be seen by quite a few other paralyzed folks I know to be pretty offensive. I'm thick skinned, but many others aren't. The immobility granted by a nerve injury is just one of many terrible experiences a sufferer of such a condition may go through.
In other words: "Ignore the loss of bladder and bowel control, infertility and ED, the triggering of auto-immune diseases, breathing irregularity, heart arrhythmia, generally much reduced life-span, and the necessity for round-the-clock nursing care, here's an arm back!" is not an effective enough treatment for which we can say 'Don't worry' yet.
I do have hope -- but the techie in me has more faith in the pursuit of BCI/Spinal-cord-skipping rather than biological treatments.
Thank you for covering this issue properly. I cannot thank you enough. As a disabled individual, I appreciate you telling it for what it actually is here. That can be hard to do.
(I'm sorry, but what follows is likely a bad analogy…)
I imagine this is similar to the difference between fixing a low-level bug (e.g. a kernel or CPU bug) and a bug in a relatively high-level application.
The autonomic dysfunction (including the super-horrible autonomic dysreflexia events) would still occur in higher level spinal cord injuries, including in people with higher level paraplegia and more commonly in quadraplegia, in the case of nerve transfer. It is not as good as it sounds, as autonomic dysreflexia occurs in up to 90% of people with injures above T6, to varying degrees. The autonomic ganglia (which runs adjacent to the spinal cord, and consists of a different type of nerve) controls this, not the spinal cord. You simply cannot do a nerve transfer for the autonomic nervous system without just about dying. By the way, trust me, autonomic dysreflexia is actually one of the worst feelings in the world.
I had a friend who broke his toes repeatedly to do so before track events. I had another friend in physical rehab that used to purposely sit on his own testicles to trigger an AD fit for the same purpose.
It's a pretty terrible feeling, but I guess if there is a strong enough desire to win you can put yourself through whatever you need to. I've gone through a lot of shit medically, but AD and the accompanying loss of blood pressure and uptick in heart-rate is one of the closest to "feeling like i'm going to die" i've ever been.
Frankly, as somebody with 2 rare autoimmune nerve diseases (affecting my peripheral nervous system), who is disabled, I am not excited about this news.
Do they have any sort of residual neuropathic pain, either from their injury or the procedure? What sort of functional limitations do they have? Did their autonomic dysfunction improve (extremely unlikely to improve with a nerve transfer procedure, as described above)? Etc., etc.
I am sure this is more heartwarming than anything else. I am perfectly OK with being disabled, and I just wish society would accept us for who we are (as disabled people). I am tired of people in tech posting "inspirational" stories in general about "overcoming disabilities" or "making our lives better" (because "we suffer so much"), without any sort of interview or input from the disabled person. We are always portrayed as objects, and are never at the center of the story, and if we are, we are still the object because it is about making a gerry-rigged mobility device with a high school robotics team with Home Depot materials because our insurance refused to pay for something medically necessary.
The most famous example of a "heartwarming story" about the disabled is wheelchairs that climb stairs (that probably are not safe to use in the rain or on carpeted stairs), that cost tens of thousands of dollars and have huge design constraints (which are almost never mentioned). Plus, if you knew how US insurance reimbursed wheelchairs (which should be classified as a prosthetic device, versus an orthotic device), you would be absolutely appalled. I would not hold my breath on insurance reimbursement for a procedure like nerve transfer anytime soon, either.
> They can now perform everyday tasks independently such as feeding themselves, brushing teeth and hair, putting on make-up, writing, handling money and credit cards, and using tools and electronic devices.
The way this news is portrayed, as "heartwarming", does nobody favors.
The autonomic dysreflexia, which people with tetraplegia are almost guaranteed to have, is literally one of the worst feelings in the world. I promise you, and I have experienced it firsthand. This cannot be resolved by the nerve transfer.
It's not about worth or function-It's about perspective and how things have changed for them. That is what really matters. Nobody ever interviews the disabled people who participate in these sorts of things, and limitations are almost never honestly described in these circumstances. If you do not recognize the hypocrisy, then I do not know what to say.
By just portraying it as heartwarming news, it does no favors for people who are actually going through things like this. By the way, it is not at all heartwarming for us. We also cannot make informed decisions off of articles like this, and it is harmful because the bar is either set really high for us--or really low.
Our lives are tied more to "what we are worth" far more than the abled-bodied. I could go into it more but I don't want to write a really long winded post.
I absolutely agree that lots of 'inspiring' disability coverage seems hostile and dehumanizing, celebrating changes that make disability invisible rather than those that help people. But a lot of social-model reactions to that actually give me the same feeling of being more worried about social perceptions than individual well-being. I'm sure this is influenced by my personal and first-hand experiences, which have mostly been about disabilities that produce pain or limited autonomy, without much in the way of support from design or devices. From that starting point, I'm hesitant to go too far down the road of prioritizing acceptance and accommodation over treatment; for some things there's just not much to be done outside of lessening pain or increasing function.
As far as medical devices, I'm entirely on board with you. There's an overwhelming trend towards solutionism, promoting high-tech tools of dubious merit (or amateur replacements for quality devices) rather than focusing on the cost, reliability, and usability of basic tools. And realistically, a lot of those high-tech tools seem focused on decreasing the visibility and social impact of disability rather than improving quality of life for disabled people: a stair-climbing wheelchair could offer some value to the users, but it largely sounds convenient for the people who no longer have to worry about accommodating ramps, lifts, or stair chairs. Adapting environments to devices is often more robust and cheaper than the reverse, but it provokes a lot more negativity.
But I'm a bit surprised to see this response on this story; surgical advances generally strike me as something with far more long-term potential and more patient focus than gimmicky new devices. A 'breakthrough' new wheelchair is quite likely to have insurmountable limitations, but breakthrough new surgeries often develop into reliable and commonplace treatments. As far as this specific work, the functional limitations improved from "no measurable grasp strength at all" pre-surgery to "enough grasp strength for most everyday tasks", which seems like a major and straightforward improvement. Autonomic dysfunction presumably didn't improve, but this surgery is being studied as an alternative to tendon transfers, which doesn't provide that either. Pain data appears to be in the study's full text, which I don't have access to, but several common and painful issues tendon transfers were avoided. Further, the treatment appears to already be competitive with or cheaper than other options, so it might become covered quite quickly - if not in the USA's insane system, then at least under national health plans. Most interesting to me, patients in the study were offered 'mixed' treatment of tendon transfer in one hand and nerve transfer in the other. By their self-report, they preferred the resulting adaptability to either treatment on its own.
There are certainly ways medicine and society handles this sort of advance poorly, like focusing on numerical outcomes without prioritizing (or even asking) the views of the disabled person, or pressuring people to accept risky or painful treatments to decrease their care needs. But I very much don't see that in evidence here; the study was specifically designed to obtain subjective feedback from the patients, and the researchers choose to close their remarks not on celebrating a technical result but on emphasizing the importance of societal support and patient decision-making. I didn't get "heartwarming" from this but "cautiously optimistic". The lack of accounts from patients is unfortunate, but to my knowledge that's often (in stories about research) a function of privacy and ethics rules rather than disinterest in those voices.
I definitely agree with you. Thank you for taking a look at this objectively. I really do appreciate it.
A lot of this stuff is frustrating to me. I live with 2 rare autoimmune neurological diseases, with one of them being very rare, which changes the rules of the game, almost completely. I really should not be alive and I constantly worry about making a bad move medically because my care is complex. Even turning 30 felt like a milestone for me. I almost constantly have to worry about access to care, too, which is why I became a European Union citizen, in addition to being American. But, it is not due to typical things that people worry about like having access to insurance or paying for it. It basically is for logistical reasons.
My training is in electrical engineering. From my standpoint, I can tell the difference between a gimmicky medical device and something that is promising. With surgeries, I would definitely say to a lesser degree, but I am always skeptical about the consequences. I also do not know how things typically play out long-term, especially living with rare diseases. I am always skeptical in general, and for good reasons. I have always been careful about what moves I make medically. I am also extremely stubborn, and perhaps that is why I am still alive.
Either way, medicine in the past 10 years or so has started to change profoundly. I do think promising things will occur, perhaps on a timeline even. However, access to things, such as in the US, will be of a different story. That is another reason why stories like this bother me, even though it is far from happening logistically, in this case.
Thank you, this makes a lot of sense and it's really interesting to hear.
It's depressing how often 'disability' gets reduced to a single quality, as though changes have a standard effect on disabled people as a group. Our different experiences seem like a great demonstration of that. On one hand, complex care that makes "brilliant" new solutions unlikely to do anything, and a distraction from access and support to existing care. On the other, issues so straightfoward that access to care and social support are largely meaningless - but also leaves me with an eye on shiny new advances because existing treatments start and stop at pain relief.
As an aside, I really appreciate the point about relevant training - I do worry that there's a "Gellman amnesia" issue here where I'm acutely aware that I should be skeptical of motorized medical devices or brain-training games, but don't have an adequate skepticism about drugs or surgery. I think medical devices really are singularly prone to ludicrous overpromising, but it's hard to know how much of my doubt should extend to other topics.
I wish you well, and I hope the mundane business of living and getting care goes as well as possible. There's a lot of interesting change on the horizon, but people shouldn't let it overshadow improving lives however we can today.
You definitely nailed it on the head. You are awesome! :)
Thank you for being gracious, understanding and thoughtful about these issues. Also, thank you very much for the well wishes! I really appreciate it.
As for more open-ended stuff, like procedures, I tend to look at the "best-case scenario" data in the literature, and use them as a reference. Then I compare them the data in general across the spectrum for that procedure (as best as possible). If I determine there is a lot of variance (often there is) it can be a red flag. Obviously this is not reliable, and it can absolutely fail. There are a lot of intricacies involved. But, it is a starting point.
In terms of medical devices, I can read a patent and I can usually tell if the technology is legitimate or not, in terms of if "the technology is there versus it being a gamble whether it works or not" (which you would have to look at clinical results data and more to make more determinations).
In terms of telling if an electronic device is gimmicky or not, versus promising technology (also applies to medical devices, but not completely, as it is interfaced with the human body, usually): I read patents too. But most importantly, I can tell usually just by the specifications alone of the hardware. If the combination of hardware is not adequate for the claims they are making (in order for the device to actually be reliable), there is no way that the device will be promising. It will meet the "gimmicky" criteria. Of course there are other ways that medical devices can be messed up (such as product design and/or software) but that is becoming less common (except for perhaps, the risk of cyberattacks) as there are huge investments on the product. In that respect, it is best to look at the overall reputation of the company and the previous iterations of often (very) similar devices. But, being the number 1 best seller (often means they excel at marketing) does not mean they are best. I would rather have my insurance cover something that is innovative design-wise that took ingenuity (and is reliable and solid) than incentivize a company that would rather do "software upgrades" (far less risky) as "innovations" that they market to be groundbreaking (when they are often not).
Anyways, if you have a colleague or a friend who is an engineer, ask them what they think about X, Y, or Z devices, and have them get back to you. Engineers do not play to things like corporate politics and will usually give you a fair and relatively unbiased opinion. They are, after all, applied scientists. It can never hurt to have such input, and usually it is very good.
It's really heartwarming to have progress in this field of medicine! I feel anxious just imagining being unable to move my arms.
But there's a catch:
> Despite these achievements, nerve transfer surgery still has some limitations. For the best results nerve transfers should ideally be performed within 6-12 months of injury.
I hope this method will progress to have a much longer span of time allowing this surgery.
The problem isn't with treating new injuries. There are a lot of paraplegics in the world today who were injured a long time ago, and it would be nice to fix them...
When I was injured in 1991, they transplanted nerve sheaths from my leg to my arm with the hope nerves would regrow. Some actually did an I regained some sensation and movement.
That was considered pretty good at the time. I wonder how much better off I'd be if I'd been injured today instead.
How exactly does a nerve transfer work? I always imagined that certain control and reception signals would have their dedicated nerve connections, such that rewiring from a transplanted nerve would jumble up the wiring and give 'incorrect' results.
Even if the result is incorrect at first, the brain is adaptable and will simply remap to correct the bad wiring.
There are videos on youtube of people who put on googles that invert the view of the world upside down. After a few weeks/months of adaption, they can live in that condition as normal.
It seems like there's a very deep idea of how a bike should work and instead of learning the new behaviour bit by bit the new idea just "clicks" at some point. I've heard people with up/down flipped goggles also say it's quite sudden change. I'm curious if it's similar for reconnected nerves?
This! This is so hard to explain to others who are trying to get into learning a new instrument. The most frustrating part is that rarely will I see the results of my practice on the day of practice, especially for tricky sections, which can make the sessions feel kinda useless. Then I'll come back a day or two later and suddenly my hands know what to do. "Okay let's start at marker B and... oh, okay!"
The hard part then, of course, is letting them get on with it, and only correcting actual mistakes. If I try to analyze what they're doing the whole thing kinda falls apart. That moment when I can switch from focusing on notes and rhythm to ... more like conducting from afar is the moment when a piece really starts to feel playable. But getting there is always a challenge, and pushing through that challenge is the toughest part.
It's really kinda fun to go back to a piece that I used to know really well and dust off the cobwebs. "Now how did this section go? .. I have no idea what chord that was. Hrm... maybe if I start from a phrase earlier and play into it... oh... oh that's how it went!"
I wonder if babies work this way? i.e.The brain doesn't know which connection is which until the it performs thousands/millions of movement tests to see what moves what? Then over time it solidifies the muscle memory?
A lot of stuff is preprogrammed or developed before birth. Most of the senses work and the motor system atleast knows what nerves do what (though coordination is 0).
Other animals come out far more developed when born and have a functional motoric system and brain, our species doesn't do that mainly because it would be difficult to have the baby fit through.
I wonder if they learn some of it still in the womb. After all, most mothers say they can feel "kicking" sometimes. That might actually be the fetus learning how to extend its limbs
As someone who has been pregnant and had a baby, it's much more than feeling kicking "sometimes." It's all sorts of movements, and you can even tell which part of the body is where (depending on the position of the baby). They'll even do somersaults in there before they get too big.
The movement is frequent enough that a measure of health for the baby starting about 3/4 of the way through the pregnancy is to have the mother count movements until she reaches 10, which should take between 30 minutes and 2 hours.
I seem to have awareness that people have redirected the auditory and visual cortexes as an experiment and found that sight and hearing were recovered eventually?
Unfortunately I can't find a source to verify this so hoping someone with better knowledge could confirm that this is just how plastic the brain can be?
There also an experiment where they remove the rods and cones of mice and replace them with light sensitive proteins from some bacteria, and the mice achieve some level of sight after a short period of time. Neuroplasticity is crazy.
I kind of doubt that you can do that because blind people still use their visual cortex when they make out the shape of objects by tough, or when they navigate the world, so I would assume the visual cortex is a specialized "hardware".
It strikes me that it's less specialized to processing sensory input from light and more specialized to constructing a model of where things can be expected to be in relation to where the body is. So it's like a proprioceptory map.
It's interesting because I can look around my bathroom in the light, turn the light off, then reach for and grasp EG a toothbrush from memory on the first try without feeling around. It's like the images are a map of where things are and that map doesn't require the sensory images once it's constructed, nor does it require visual stimulation to construct.
The physical therapy to help the brain remap the wiring following nerve transfers is pretty intensive. It's not something that happens quickly or easily. But even limited function after a long therapy period is much, much preferable to no function at all for these patients.
I had one of these placed in my hand after I severed the nerves in one of my fingers... It took about 1 year before I regained any feeling and 2 before I regained maximum nerve use.
Not all types of nerve cells are the same size. Some are several feet long, but some are only millimeters long. I assume this technique must make use of the shorter ones that survive?
I know, there are plenty of reasons that certain diseases have been harder to crack, but the disparity always seems so striking. This nerve transfer study seems so incredible and futuristic, and yet there is still so far to go.