I don’t know if this helps the sensory issues or the digestive ones and I don’t care.  I was prescribed a medicinal crazy straw for the sensory integration issues.  The biggest mechanism of action is something something ear fluid pressure, but there are other, subtler ones.*  At this point I don’t know why it works and I don’t care: sucking on the crazy straw makes me feel better and less sensitive to noise.  Even if it’s a placebo effect, I can’t think of what damage I could possibly do to myself drinking through a crazy straw, so I’m not questioning it.

My bonus discovery was that straws seem to help with digestion/nutrient absorption too.  Most vitamin dosages are too high for me, so I spill some of the contents into water and drink that.  If I take too much, I get symptoms ranging from “stomach ache” to “vaguely icky.”  If I drink that water with a straw, I can take a higher dose (of anything) than if I drink the water directly.

My hypothesis is that sucking stimulates the “nutrients are incoming” reflex that chewing is supposed to, and thus my gastrointestinal system is more prepared to accept and use the bounty I am giving it.  This definitely falls under “plausible but not proven”, but it seems to be working for me.

*The sensory therapist was not good at Science, and I was in shock after doing the evaluation, so my recollection of her statements is not of much value here. 

There’s two goals that can be served by video games, or any other SID therapy.  One is long term improvement by teaching the body new patterns.  For example, you could put a patient on something that produced constant motion (like a horizontal swing) and vary the angle of their head.  This teaches their body how an given motion and angle feels in their vestibular canals, which they will recognize in the future (like when they’re on the subway), thus lessening the stress on their system.  This is the equivalent of rehab exercises after a knee injury.  The other is short term calming of a sensory system that’s in overload.  Once a person hits overload, even stimulus they could usually handle becomes painful, often making the overload worse.  This is awesome not only for the immediately obvious reasons, but because it returns a sense of control when you need it most.

I haven’t read anything official on this, but from a patient’s perspective, the difference between these is a matter of degree.  The ideal stimulus for the first is something novel enough that I’m gaining a new skill, but familiar enough that I can relate it to something I already know, and learn by analogy.  The ideal stimulus for the second is very familiar, because a large part of the goal is to return a sense of control.  But both benefit from coordinating multiple types of input (aural, visual, kinesthetic)- one because it gives a new pattern more places to hook in, the other because it makes input more predictable.

With that said, here’s a list of video games I have found that do either of these things.

Dance Dance Revolution (available on all consoles, and a grey market PC knock off): the original rhythm game.  DDR has you tap a dance pad with your feet in time with signals on the screen.  Technically, the signals don’t have to match up with the beat of the music, and sometimes they don’t on advanced music.  I refuse to play those levels.  DDR is great because it uses the whole body, teaching you where you are in space.  It also involves jumping, which my OT says helps reset the vestibular system.

Enjoy this video of a four year old boy being better at DDR than you will ever be.

Patapon (PSP): control a tiny army by typing patterns rhythmically.  Patapon is awesome because the rhythm is in service to a greater goal, it is progressive but allows you to replay old levels (so you can push yourself for long term therapy or play an easy level to treat acute dysregulation), and because they did a great job coordinating the visual, auditory, and even spatial cues (if you play with headphones the sound of a beat corresponds to where the button is on the controller) .  There’s a very subtle visual indicator for the “beat”, which was invaluable when I was starting out.  The PSP is portable, so you can take it to stressful things like say your job and use it to keep one bad thing from ruining your day.

Synthesia/playing an instrument (PC/flexible).  Instruments coordinate physical motion and sound.  If you’re starting from scratch the piano is a good choice because playing individual notes is easy (as opposed to wind or most string instruments, where just getting a note out is a challenge), but I may be biased because that was my mom’s choice of instrument for me as a child.  I hated it then, but as an adult playing pop songs of her choosing, I’m really enjoying it.  There is something really calming about getting the right note, the one that matches the song in my head.  Additionally, music is heavily tied into the emotional systems, and can provide a way to express or access feelings people (especially children, especially ASDers) have trouble expressing.

Synthesia is DDR for the piano.  The song selection is a little limited, which is why I haven’t bought it yet, but just watching the videos calms me down.

Synthesia’s not the only learn-to-play-piano software, and if you’re really interested it’s worth researching.  The right software/piano combination will even light up the keys for you.

Speaking of which: if you’re buying an electronic piano, you have a lot of choices over a very wide price range. The ones don’t actually sound that much worse, but the keys are way less satisfying.  They don’t resist properly, and the cheapest ones don’t even modulate based on pressure.  I got used to playing on the $2000 keyboards at work, which have very satisfying keys.  I wasn’t willing to spend that much, but I discovered that the learning Yamahas (at least the PSR E433 and E343) are a pretty good compromise.  Their keys don’t have the same heft to them, but their speakers vibrate the keys ever so slightly, which gives a different kind of feedback.  They also have displays showing you exactly which key you’re hitting, which is really helpful when you’re still learning to read music.

WiiFit/other Wii Balance board games (Wii): these were pretty meh for me, there wasn’t enough kinesthetic feedback.  But they are a great way to provide visual feedback on balance, if that’s your particular issue.

Guitar Hero/Rock Band (XboX 360/PS3): these fill the same niche as DDR and piano, but have never worked for me.  Guitar is too hard, drums are too easy, and no one will ever let me sing.

Thomas was Alone (PC, PS3, iOS, PS Vitae): A game about rectangles making friends.  This has nothing to do with sensory integration but it’s my favorite game and I couldn’t not mention it.

I will read any autobiography written by a comedian, regardless of the quality of their other work.  They’re great because they can’t turn off their comedian analysis skills no matter how bad it makes them look, so even when they’re trying to lie you can learn a lot.  This is how I ended up surprise reading a cancer memoir.

I’ve never had cancer, but I did read it in the immediate aftermath of my surgery correcting a previous surgery correcting a previous surgery, so I felt a little kinship with the  cycle of pain and uncertainty.  And I think she did a really good job portraying that- the ups and downs, what a positive attitude can and can not get you, the costs and benefits of fighting doctors and using alternative treatments.  It was a very honest description of both hope and despair without become overwhelming.

The book ends while she’s in treatment for recurrence, which would later go on to kill her.  In some ways that’s not very hopeful.  But I think it’s a good book anyway. 

The first time I had this surgery, I was terrified of nerve damage- either from the infection itself, or from injury to the nerve during the operation.  There is nothing like feeling post surgical pain and trying to guess if it’s temporary healing pain, permanent nerve damage, or lingering infection.  So I’m kind of surprised how serene I feel right now despite having some pretty severe (albeit probably temporary) nerve damage.  Right now my right lower lip, chin, cheek, and gum feel like they’ve been novacained up.  The lip in particular feels like someone applied liquid nitrogen to it.

I’m serene first and foremost because if I’d been given an omniscient choice, I still would have done the surgery.  This freaky numbness is way better than the pain.  Two, as post surgery nerve damage goes, “diminished sense of pain” is a pretty good one.  Three, it’s almost certainly temporary.  My dentist couldn’t tell me how long it would take to return to normal- I get the sense that it’s a long tail distribution- but he seemed very sure I would. Ideally I would like the icy feeling in my lip to go away now, and then for my gum numbness to recede just slightly slower than the pain.  

My dentist has a tendency to give slightly more metaphorical/dumbed down explanations* than I would like, and I haven’t had the cope to press him on it. His explanation for this was that my nerve and the infection had made friends, and without the infection my nerve was sort of lost and confused, like a person reeling from being friend-dumped.  That sounds unlikely to me to be literally true, so I’m going to investigate.

Clue number 1:  the physical placement of numbness is exactly that followed by the novacaine injection I had for the surgery, minus my tongue.  This appears to match the coverage area of the inferior alveovar nerve, although that does not cover the check.  In fact, wikipedia says that a common dental infection site hits exactly that nerve plus the lingual (tongue) nerve.  So IAN numbness without lingual nerve numbness would explain what I’m seeing except for the cheek.  The cheek is covered by the buccal nerve.  The buccal nerve joines with the IAN nerve fairly quickly , but if a single problem was blocking them both there are a number of other sites that should be involved (including the tongue).  There’s a number of possible explanations- I misinterpreted gum numbness as cheek numbness, I have nonstandard anatomy that connects my IAV to my lower cheek, the physical stress of surgery.  But the cheek numbness is fading much faster than the other numbness, so I’m prepared to just ignore it.

Clue 2:  this feels exactly like novacaine numbness**.   The –caines work by blocking the sodium channel, which prevents the sensory nerve from firing.  It’s like being a spy without a way to report to the mother country- you might know a lot, but you have no way to tell anyone.  Humans acclimate to extended doses of novacaine (or other drugs) by altering their chemistry.  For example, cocaine causes your brain to release large amounts of dopamine.  Over time, your brain compensates by reducing the number of dopamine receptors.  It seems plausible to me that toxins produced by the bacteria could have altered the environment the nerve was in enough to cause it to adapt back.  Hypothetically, if they raised the sodium concentration high enough, my reporting nerves may have upped the sodium concentration required to get them to care.  This would explain exactly the symptoms I’m seeing, and provides a convenient mechanism for the problem to fix itself- the nerve will notice nothing is going on and adapt to its new environment just like it did the old one.  And it is consistent with my dentist’s cartoon description of the issue.

Holy shit, I didn’t start checking blogs and playing 2048 until that last paragraph.  Until then I was only writing or researching.  This is amazing.

Of course this is pretty speculative.  I’m not at all confident in the specifics of my explanation.  But honestly regardless of explanation the most helpful thing I can do is give myself an excuse to not freak out, and I’ve done that, so mission accomplished.

 

 

*When I asked about pre-op antibiotics he said “no, because when you use antibiotics the bacteria have babies, and those babies are immune.” Most common antibiotics either work by retarding cell replication, or are effective only against actively dividing organisms. My guesses for what he mean are: “no, I don’t want to create resistant bacteria your immune system can’t reach.  Let’s hold that in reserve” (although I didn’t end up with antibiotics during or after either), or possibly “no, those will kill the actively dividing bacteria but leave colonies of dormant ones that are harder to find on their own.” or if I want to get really speculative “antibiotics do nothing but create resistance if your immune system can’t reach the infection, and your infection is in an area with poor circulation.”  Any of these would be preferable to my dentist believing in Lamarkian evolution.

**Note: novacaine left common use in the US years ago, more effective and less risky equivalents exist.  But while they vary in exact side effect profile and action time, every one I’ve had creates this exact feeling, and they have similar if not identical mechanisms of action, so I’ll go with the name I learned as a child.

Surgery went great.  I’m still healing and very tired, yet I already feel better than I did before the surgery.  It is amazing what not having gangrenous bone in your jaw will do for you.  I’m already reading and video gaming better than I was on Thursday.  

As for my writing… it was four hours before I started the entry below and I finished it, and it’s basically a paraphrase of the wikipedia article.

Paraneoplastic syndrone

First, let’s guess from etymology.   Fair warning, this paragraph is basically throat clearing as my brain gets used to writing again.  Witness that step one was “google “etymology” to make sure I didn’t confused it with entomology or etiology again”.  Step two:  para usually means alongside of, neo means new, plastic means… well in biology it means “flexible in response to stimulus”, but I’m not sure if that’s true for medicine.  A neoplasm is an abnormal growth, including but not limited to a cancerous tumor, and cells in these growths are referred to as neoplastic cells, and its root is plasma, meaning formation, so I was kind of close but I’m still glad I looked it up.  Syndrome means “a set of symptoms that we are pretty are linked.”   Putting it together, paraneoplastic syndrome means “a set of symptoms connected to a tumor but actually caused by the tumor itself.”

Dr. Wikipedia says I’m mostly correct.  Paraneoplastic syndrome refers to symptoms caused by the body’s response to the tumor (such as your immune system correctly identifying the cancer as bad overgeneralizing and attacking healthy cells), or because the tumor itself is secreting a messenger molecule in unhelpful ways.  For example, your adrenal glands produce cortisol.  The volume produced is moderated by an incredibly intricate system of checks and balances.  If some of the cortisol producing cells turn malignant, the may either change the balance of power (too many cells receiving a “go” message) or they may lose the ability to respond to signals all together and get stuck in the on position.  This leads to an overproduction of cortisol, which can affect any organ influenced by cortisol, even though they’re no where near the tumor.  

Why does this come up on House so often?  Because it’s a single explanation for failure in multiple organs, and still leaves a great deal of mystery about where the root cause lies.  Pretty much perfect for House.

You may have noticed a drop off in both post quantity and quality.  I noticed too, but I couldn’t figure out why.  Turns out I had an infection in my jaw and while I was able to suppress conscious knowledge of the pain, it was still causing quite a lot of it and that made it impossible to concentrate long enough to do the long form deep dive science posts I’m really proud of.  I’m having surgery to remove the infection tomorrow, and hopefully after I recover I’ll be able to tackle my backlog, which includes

• ASMR
• zinc for colds
• common misconceptions about diabetes and obesity
• More crisis chat observations
• Why NSAIDs are hard on your GI tract (inspired by recent events)
• Words I keep hearing while I watch House, the smartest show I am currently capable of watching
• How narcotics work and why they just don’t in some people (inspired by past events that I am being reminded of in the present)
• The neurochemistry of learning
• Non traditional treatments for sensory integration disorders AKA how my occupational therapist learned to stop worrying and love video games
• The cool stuff my dentist did to help bone regrow perfectly after he removed the gangrenous part that totally worked (anticipated)
• How much better life is after all my pain and chronic infection went away (desperately hoped for) 

But I don’t have the energy for any of those.  Instead, I’d like to share an essay I wrote the first time I had this surgery, 18 months ago.

My dental surgery was originally scheduled 5 weeks in advance. The pain got worse, they gave me antibiotics. The pain still got worse. It felt like biting tinfoil, which meant whatever it was was interacting directly with the nerve. This would make me nervous if I didn’t already have a broken oral nerve. The periodontist agreed to work outside her usual hours to fit me in in a week (three weeks earlier than scheduled). The pain did get better, but it came in waves and I decided I didn’t want to reschedule again, so I didn’t tell them. The surgery was today.

In many ways, it was the best possible outcome. 30 seconds after cutting (just long enough to clear out the pus), she found aberrations big enough to cause the problem, but no bigger. There was a sliver of broken tooth, presumably left over from my wisdom teeth removal (which was over four years ago), and a lesion that is assumed to be a bacterial cyst unless the biopsy says otherwise.* The lesion was within a few millimeters of the nerve, but not touching it. This is good, because if it was on the nerve my choices would have been nerve damage or never clear the infection.

I don’t have good data on this and the doctor was patently uninterested in playing what-if with me, but it certainly seems plausible that the three weeks between the new date and the old would have been enough to grow the cyst all the way to the nerve. I already have nerve damage on one side and it’s awful, I don’t know what I’d do about both. it’s entirely possible the reason this got so bad was that I’m so good at not hearing pain from my mouth that I didn’t notice it. I know I didn’t report it to the dentist at first because I was too fucking stressed out to deal with it, I just wanted to do the right thing and get my teeth cleaned and I’d deal with the chronic stuff later. If I hadn’t gone in for the intensive cleanings, who knows when this would have been caught? So there’s two paths that lead to nerve damage.

I think this got treated faster in America than it would have in any other country. As I understand it (and good data is woefully hard to find), countries with national health care operate on a pretty strict queue system, and doctors have no incentive to work extra hours. I assume you can jump the queue if you can prove you have a more serious problem, but because the cyst was soft tissue it didn’t show up on an x-ray; the only metric we had was my pain. While my periodontist believed me enough to reschedule the surgery, it was clear that seeing the size of the cyst** caused her to retroactively give my complaints a lot more credence. A queue that can be jumped by claiming more pain won’t do it’s job, so in an NHS world I probably would have been stuck with my original number, which undoubtedly would have been longer than the 8 weeks between my dentist popping the first (smaller, exterior) cyst and now. Socialized medicine could easily have caused me permanent nerve damage.***

On the other hand, I only got seen and operated on that quickly because I have money. Lots of money. Enough money to see my dentist 16 times a year, to take the first available periodontist appointment without worrying about paying for it, to take the first available surgery slot without worrying about paying for it. More subtly, having and growing up with money makes it easier to have the entitled attitude that led me to tell the periodontist this couldn’t wait. When I told (not asked) my boss I needed to move the surgery earlier, but this was better timing for the company anyway, he said “well, it really doesn’t matter how the timing affects us, if you need it now you need it now.” This exactly the sort of care you can make yourself believe doesn’t need to be treated right away, giving the infection time to spread. People die of this.

I prefer a market-based health care system not because our system is working particularly well, but because I believe it has to capability to improve in a way the NHS does not. This ability to change comes at a terrible price, and no matter how much money I donate to dental charities, I’m not the one paying it.

*Me: so is there anything the biopsy could reveal I should be worried about?
doctor: no.
Me: Then why are we doing it?
Doctor: something something best practice

I assume that there is a small but present chance this is something awful, like cancer, and she doesn’t want to have to talk to me about it until we have actual data. Which I’m sympathetic to, but I’m also pissed that I was being asked to decide whether this was worth my money and the cost of a false positive while I was under a quarter milligram of a benzoate, massive amounts of whatever local anesthetic they gave me (which does make me feel mentally weird), and the stress of surgery. This was a predictable outcome of the procedure and they should have asked me ahead of time. 

**Biggest she’d ever removed. She had to leave behind a plug so the gum tissue wouldn’t collapse in on itself, any bigger and it would have required a graft.

***Possible relevant and even more frightening: antibiotics would not have fixed this. My cyst was that huge despite me finishing a course of amoxicillan a week prior.

 

Looking back on it now, I certainly feel some bitterness that they apparently missed some infection, and that that provider blew me off when I brought my continuing pain to her.  I’m very afraid that there is or will be nerve damage, especially because that makes the chewing that will ultimately solve my digestive problems painful.  But given that I have this problem, I’m still incredibly lucky.  I have even better insurance now than I did last time.  That time I just had the money to take off work, now I have truly astonishing disability insurance. It is hard to feel lucky when your jaw is in screaming pain, and the NSAIDs you took to stop it made your stomach join it, but I still am.

The Washington Post reports that hurricanes with female names kill more people than hurricanes with male names, because people take them less seriously.  This sounds like amazing hard proof  of sexism in America… except that the data dates back to 1950, when all hurricanes were female.  They didn’t start using male names until 1979.

I tracked down the actual article, and it isn’t any better.  They brag about using multifactor analysis taking into account the gender associated with the name and minimum pressure, which I assume is a measure of severity of the storm.  What they do not account for is the year the storm took place.  So the empirical data that female names are associated with higher casualties could be explained entirely by improved building standards and warning systems.

They’re not that dumb, of course.  They did a set of lab experiments that would usually really impress me, asking people how they’d react to various hurricanes of different characteristics and varying the gender of an otherwise identical hurricane.  People really do seem to respond differently to the hypotheticals when the hurricane gender changes. I was all set to dismiss this anyway, because leaving out the detail about the change in naming patterns was so ridiculous I couldn’t trust them.  But then I found an addendum, noticing exactly my concern.  The sample showed the same pattern, with less statistical significance on account of the smaller size.  So my brilliant plan to demonstrate my intelligence by tearing others down has been foiled, and I am forced to once again confront the unpleasant reality of sexism in America.