This thread’s subtitle can be: It’s hard to find data on treatments and their outcomes. WHY??!! Grrr…
Why is it, if one has a disease and needs to find which surgeons have performed a specific surgery, nailed right down to the exact CPT code, why can’t I find data on:
- who has performed this CPT code? And
- how many have they performed, and over what time period? And
- what have their patients’ outcomes been?
Why can’t it be like cancer, which is a mandatorily reported disease with lots of data broken down in cancer registry databases including dx code, tx (CPT) procedures, patient demographic data, and outcomes and survivability? Ever wonder why cancer docs can quote to patients what, for a given dx and for their planned course of tx, their likely outcome will be? It’s all in the data. That data is collected at every hospital and treatment center, rolled up to the state level, and then aggregated at the federal level. From that data, statistical models can be built. But you have to have the data, it all starts there. Welcome to my workd, but that’s not for right now.
I wish there were similar DBs for TN and HFS! And why not for other serious diseases? In the end I got some somewhat sloppy but usable data from a Yahoo! Group. I will get to that…
In the meantime if someone has info on possible answers, please share!
I’m starting this thread because I was somewhat surprised yesterday to find several SDMB members dx’d with TN, or trigeminal neuralgia. TN is not very common (thank goodness!). While exact numbers aren’t easy to define, the NIH says about 12 people per 100,000 get it. (See here, https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Trigeminal-Neuralgia-Fact-Sheet) Yet for those unfortunate to have TN, it can be debilitating, and awful. One of its nicknames is the suicide disease, and there’s a reason for that. Google will point you to TN’s details. Anyone with TN, my heart really goes out to you.
There is a current IMHO thread where at least two Dopers have it. And then a quick SDMB search found others. While TN has never been in an SDMB thread title (until now), based on current search capabilities here, there are at least 56 other threads where it is mentioned.
There is also a closely related disease, hemifacial spasm, or HFS. While TN and HFS can and often do have the same root cause (blood vessel impingement on a Cranial Nerve – blood pumping through the vessel excites the nerve), the symptoms are very different. HFS can be somewhat debilitating, and I know because I’ve had it, but bad HFS in no way compares to bad TN. As bad as my HFS was, and it got pretty bad in the eight years I had it, I was always grateful I had HFS and not TN. I often like to say ‘things can always be worse,’ and in the case of HFS and me that was most certainly true!
HFS affects about the same number of people as does TN, about 10 per 100,000 according to UPMC, the Univ. of Pittsburgh Medical Center. (http://www.neurosurgery.pitt.edu/centers-excellence/cranial-nerve-program/disorders-treated/hemifacial-spasm). Just like the numbers for TN, the numbers for HFS are “fuzzy” and not easy to nail down. I base that on my years of researching my own disease and my many discussions with neurosurgeons at UPMC, and also at Stanford and UCSF and hospitals in San Jose here in California, and with other professionals as well.
Searching SDMB on hemifacial spasm finds at least 4 threads where it is mentioned, and only 1 where it’s in the title – mine, from 2013, almost a year after I was cured (see here, http://boards.straightdope.com/sdmb/showthread.php?t=685914). The video link in that thread no longer works, so I found 3 quick examples of HFS. The second one is of a poor little girl who cries because her face starts randomly spasming, uncontrollably. She can’t control her muscle spasms, and because half her face jumps uncontrollably and she doesn’t understand why it’s happening, she is embarrassed. It’s her face, the very thing we look at when we communicate. Our face, to some extent, defines us. It’s like she is a marionette and someone else is pulling the strings of her eye, her cheek, and her mouth, and that lack of control instantly breaks her down to crying. I feel for her, I know what she’s feeling.
I remember taking one video of me with a particularly bad bout of spasms, repeated bursts like an M-16 on Burst mode, except it’s not always three rounds or spasms, it can be 3 or 7 or 21 rapid-fire spasms at a time. I remember it vividly, I was in Barcelona on a business trip, in my hotel room. Videotaping myself in a mirror. It was quite bad. I never posted that video, didn’t really want to, and now I don’t know if I still have that. I didn’t have enough YouTube-fu to post it privately. (sigh)
But if I had, I doubt I’d share it here anyway. It is quite embarrassing (and no, I didn’t cry like a girl). But it looked much worse than any of those three from YouTube. And with HFS,*** it always feels much worse to the self than it looks to another***.
Hemifacial spasm is terrible. But it’s still not trigeminal neuralgia.
Many cases (not all) of TN and HFS share the same root cause, a blood vessel impinging on a cranial nerve. There are 12 pairs of CNs, or Cranial Nerves. For TN the blood vessel hits CN-V (that’s a Roman numeral 5), and for HFS it hits CN-VII. This page has a good chart of the 12 CNs, and the CNs come in bilateral pairs: https://www.britannica.com/science/cranial-nerve.
CN-V controls facial sensation, including pain. When the blood vessel hits CN-V, lightning bolts of pain can randomly shoot across the face. And their thunder can be LOUD.
CN-VII controls facial movements. When the blood vessel hits CN-VII, the facial muscles can spasm erratically, uncontrollably. And the spasms can be wicked strong.
Anyway, I had HFS. But I now no longer do! I am fully cured. I’ll share my dx and tx journey and for anyone with TN or HFS, I hope this is helpful information.
If anyone has any questions or is just curious just ask away and I’ll do my best to answer. My notes from years back, my disease history and dx and tx, they are pretty thorough…