I’m being fitted for oral splints next Thursday at 3pm. With a little bit of luck and a lot of money, hopefully this four month ordeal will be behind me by next weekend.
Florida summers suck. What else can I say?
End of blog entry.
I visited with a maxillofacial guy on Wednesday and learned a few things. Most importantly, I’m not going crazy. They did a a lot more nodding-and-agreeing than frowning and brow-furrowing, which was a relief. The doctor did his poking and prodding and listening and questioning, with a diagnosis of a temporomandibular disorder.
Taking a tangent for a moment, what’s up with the Pain Scale? You know, that thing where they ask you where your pain level is on a scale of 1 (with a next to it) and 10 (with a next to it)? The issue is that 10 is never defined. To me, 10 is pain so intense that you’ve passed out and can’t answer; 9 would be spotty consciousness and uncontrollable sobbing; 8 is where you become single-threaded and can only concentrate on mitigating the pain; and then on down the line. When the man pokes my jaw and asks for a pain level, I answer the best I can but each time I’m asking myself “Relative to what?” I feel like I’m living as a 5 right now, but maybe someone who’s been in a car accident would laugh, pat my head, and call me naive.
Fortunately my issue is with muscle and not bone, so there was no talk of surgery or other drastic action. They’re checking with my insurance company to price out two oral splints, which are kind of like retainers. Street price on those suckers is about $1200 a piece, so while I’m very interested in getting them ASAP, I’m even more interested in paying 20% of the negotiated rate instead. That will take a few weeks. In the meantime they’ve prescribed something called carisoprodol for the pain, which, as opposed to the other meds I’ve tried so far, does actually take the edge off. And it makes my jaw feel better (hi-yo! *rim shot*).
One of the most curious aspects of this whole 13 week ordeal is that I might not have found my way to a TMJ guy if not for my father mentioning, somewhat offhandedly, that it may be a dental problem and I should try going down that road. My primary care guy never mentioned checking with a dentist. Nor did the ENT, who instead recommended treating the symptom (using trigger point therapy) instead of the cause, since the cause was unknown to him.
With a little luck, I’ll only have to write one or two more blog entries about this and be done with it for a long time.
Alternately titled: The One Where Ross And Chandler Try To Quit The Gym
I had a realization this evening. I’m now putting more effort into social media than I’m getting out of it. Turns out it hasn’t brought me closer to anyone, really, and it’s stealing my attention. It hasn’t generated any money for expenses or savings for me or my family. I haven’t found enlightenment or inner calm. Mostly I feel stressed and overwhelmed at the end of the day, with just a hint of FOMO when I’m offline.
It’s whittled down my attention span to where it’s razor thin. The attention span issue plus my facial pain (which I honestly think is NOT related, despite the fact everyone is saying it’s stress-related, thank you very much) have taken a lot of the joy out of my life. I crave quiet and calm, yet it is almost unattainable. I don’t know how to do it…. how to quiet my brain.
We’re not even talking about the amount of time spent on sites like Facebook, because it’s truly not that much. The issue is the frequency. Every time the computer pauses to think about something, whether it’s doing a configure/make/make install, starting a VM, waiting for Outlook to finish doing whatever the fuck it does where it goes to lalaland for a few minutes, etc., I pop over to Facebook or Twitter or Reddit to see what’s new. Could be only 30 seconds, but it happens A LOT.
All my thrashing around, back and forth, consuming data streams like a coked up coke monkey, has to have a cost. So I’m doing a few things. 1) I said bye-bye on Facebook, and adjusted my notification settings so it wouldn’t email me to let me know all the excitement I’m missing. 2) I’m making more use of Instapaper and my iPad for longer-form media like interesting blog entries, NY Times articles and the like. I’ll check Instapaper only a few times a day, and try to do it outside of my office for a mental breath mint. Content suggestions welcome, please. 3) Unfollow some Twitter people who are just trying to drive traffic towards social media. Instead, use Twitter to find compelling long-form media. 4) I’d like to write here some more. This entry is disjointed, yes, but writing is a muscle that needs to be flexed, like some sort of.. flexing… thing. The nature of this beast requires attention and organizing of one’s thoughts, the very skills I’m trying to redevelop! What a happy coincidence. 5) Delete social media icons from browser toolbars. Simple one. Easily bypassed, but I’ll feel guilty the whole time I’m typing out my URL by hand.
Those are the first steps. I don’t have checkpoints or metrics or anything else to help me measure success or failure in this endeavor, so I’ll have to figure it out as I go. Any other suggestions are appreciated.
I’m still experiencing my facial pressure issue. This has been going on since late April… so rounding, let’s call it three solid months.
There’s no reason to believe it’s a sinus issue anymore. A CT scan was done at the beginning of July and reviewed by a radiologist and ENT, along with a visual inspection by the ENT using a scope, and everything looks great there.
I’m now of the opinion that it has to do with my jaw, and have an appointment with a maxillofacial guy downtown on Wednesday morning — an appointment that took me 3 1/2 weeks to get. It’s my sincere hope that he can poke and prod and me and either 1) make a determination and recommend a treatment, or 2) exclude the parts of my face that are within his area of expertise and refer me onwards. Clearly I’m hoping for #1, but would accept #2 if it helps get me closer to a final determination. The not-knowing is the worst part. If he said that I needed to wear bulky head gear for a month while only eating soft foods, I would sign the authorization immediately if it would make this problem go away.
The medical bills aren’t funny any more either, even with health insurance. The total bills have gone from Nice Dinner Out to Moderate Car Repair and are approaching Decent Computer. I’m praying they don’t approach Beach Vacation or Child College Fund.
The summary I’d give the doc at this point would be:
Persistent facial pressure since late August
Ringing in my ears, though usually masked by ambient noise
Pain is moderated somewhat by using a drug store bite guard
At one point I had fairly significant pressure in my upper neck
There’s nothing wrong with my sinuses or ears
Pressure intensifies if I rest top and bottom jaw together
Nose or jaw sometimes feels twitchy
Phrenilin Forte or naproxen offer no relief
I still have all of my wisdom teeth but the dentist didn’t believe it was a root cause here
We’ll see what the doctor says on Wednesday.
My recent head pressure issue has made me more aware of how a portion of our healthcare system works, how I work, and how out-of-sync we are. These synchronization issues may be common knowledge to you, but I’ve been relatively healthy my whole life. Half-decades would elapse without visiting a doctor’s office. This weird head problem has made me think a lot more about what I need from the system.
I want a primary care physician (PCP) who is the project manager. No single doctor can know everything about everything, so I understand the usefulness of specialists, but I still want someone learned in medicine who can boil concepts down for me and separate fact from, well, not fiction, but cases where my needs and a specialists needs are not completely, 100% aligned (aka profit motive). The process would be: I visit my PCP, he refers me to a ENT, the ENT renders an opinion to me and my PCP, and then I get in touch with my PCP to discuss. In that way, someone trained in medicine has a holistic view of my issue.
Communication-wise, I want to be able to call and speak with my PCP. Further, I’d like to be able to email them and receive a response within a working day or so. I don’t necessarily expect this to be free, though I don’t know if there are mechanisms in place to charge for this. It’s silly for me to take a few hours off of work to visit a doctor in person to tell them the allergy medication isn’t working and we need to move on to the next step. If we chat for a few minutes and it’s decided that it would be better if I came in so I can be examined and poked, fine, I’m ok with that.
My frustration comes from me having to be the executive-in-charge of getting my head pressure problem resolved. A medical person would be ideal. Instead I’m relying on the peanut gallery of Google searches, Facebook friends, family, etc. Someone besides me and my ENT should help decide whether trigger point treatment is the answer, considering the question of what’s wrong hasn’t been answered yet. I feel like the ENT will recommend ENT options, the dentist will recommend dental options, and the allergist will recommend allergy relief options.
I’m approaching seven weeks of living in hell. I’ll see a dentist on Monday for their opinion. If a dentist doesn’t know and an ENT doesn’t know, then what? MRI? DeWalt?
Can you spot what’s wrong with this? If you make forms like this, you should find a different job. Tip: try using the form you’ve just designed.
Address: ________ Phone: ______ DOB: _______
Or asking for magic numbers:
FASB #: ________
LUPUS ID: ________
Sorry, just grumpy because it’s 2011 and I have to fill out the same forms at every doctor’s office I visit. No, don’t tell me it’s for privacy reasons; if you gave a crap about privacy you would be pushing back on insurance companies to move away from SSN’s as identifiers.
I have a medical issue that’s making my life unpleasant. It started the second-to-last week of April or so, a few days prior to picking up a cold. Since then, I’ve been suffering from what I’ll describe as sinus pressure without wet congestion accompanied by a possible facial tick. It’s hard to describe exactly what I’m feeling, but it’s basically a lot of pressure behind my nose. Sometimes it’s towards the top, sometimes nearer the bottom.
A list of symptoms would include:
A lot of pressure behind my nose
Pressure is always present, but varies in intensity
Pressure is sometimes up behind my eyes, sometimes lower and into my upper jaw and teeth
For a few days my jaw was always tired. My jaw felt like I’d been gnawing stringy beef jerky before even starting to eat.
Constant ringing in ears, though usually masked by ambient noise.
A twitching feeling some of the time in muscles lining the nose. A few nights it’s been severe enough to make sleeping difficult. Sometimes it feels like the problem is with facial muscles, sometimes with sinuses.
There may be a post-nasal drip but since this condition has gone on so long I can’t tell if it’s a normal volume
The pressure is worse when I bend over.
As far as I can tell, I have no other symptoms. I don’t have a cough, I’m not more tired than usual, or overly headachy, or achy, or anything else.
My lymph nodes may be swollen; not sure what constitutes normal for those
There are no signs of bacterial infection, according to primary physician.
My nose doesn’t run.
I have no known allergies.
I’ve never been treated for this problem before.
I don’t believe I’m feverish.
From July 3 or so, the bridge of my nose has felt “crooked”. Hard to explain. The sensation is that my nose is misaligned to the left a little.
Update from July 5: the pressure has cranked up a few notches and is now making it very difficult for me to function at work or in life.
Update from July 8: the ENT examined CT images: no structural sinus problems, everything looks great. He did a visual inspection of sinuses using scope: no problems. He offered trigger point injection but I declined. Xylocaine or novacaine mist was blown up my nose as a test but it only took the edge off, it didn’t make a big dent. He sent me away with phrenalin forte and a saline/topical anesthetic (xylocaine) compound. The phrenalin forte is barely taking the edge off and the compound doesn’t really do anything. The pressure had migrated downward some. The upper boundary is now near the top of my top teeth with a bottom maybe 1/3 of the way down my neck. Sideways pressure throughout is the best way I can describe it. Some throbbing but mostly just pressure. The pressure equally favors both sides of my head… not left or right in particular. Phrenalin Forte dims the pressure very slightly but also seems to concentrate it behind the bottom of my nose.
And some of the things that have been tried so far:
Reading glasses; initially thought it might be caused by eye strain.
Generic Zyrtec and generic Flonase at the same time. Took for 9 days, no noticeable change
CT scan without contrast on June 27 showed nothing abnormal
A lot of saline nasal spray over the span of two days didn’t make a dent
Humidifier and hot tea
Neti pot – once, on July 4
Phrenalin Forte and a saline/lidocaine nasal spray, starting on July 7. Phrenalin took some of the edge off, but not much, and the nasal spray didn’t do anything except make my nose wet.
Updates will be here:
Update from July 9: could it be toncils? They seem inflamed and my neck feels stiff, though I don’t have a lot of other pertinent symptoms.
Update from July 10: today there’s a lot of “neck pressure”, and my upper jaw is sore.