Anybody Suffering with TN? (Trigeminal Neuralgia) Also HFS (Hemifacial Spasm).

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.

https://m.youtube.com/watch?v=Y-6AiynrwTw
https://m.youtube.com/watch?v=u_eSv8sqqMw – the little girl, maybe 6 or 7?
https://m.youtube.com/watch?v=3cu6C9PCHrY

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…

I need to break up my posts. Sorry, that OP was long.

I found my notes from five years ago, in an email to the Yahoo! Group for HFS. Remember, the root causes for TN and HFS can be the same, and it is fairly common, and so my experience (dx and tx) really best applies if and only if another’s TN or HFS has the same root cause.

Also please remember, whenever I had a muscle spasm, and in the later stages they got to be every few seconds and sometimes flurries and bursts of spasms several times a second, that is with HFS. If it was TN (again they are similar, impinging on CN-V for TN instead of CN-VII for HFS) those would be lightning bolts of pain instead of muscle spasms. I am so very fortunate I had HFS instead of TN.

My HFS Summary:
► Apr 2004: onset of left facial spasms; mild and infrequent
► Jul 2006: initial HFS Dx; spasms progressively get worse and more frequent
► Jul 2006: start meds for HFS, to Jun 2007 - tried six different meds
► Jun 2007: start alternative Txs, to Jul 2009 - acupuncture 35X, chiropractor 5X, facial healing massage, acupressure therapeutic massage
► Oct 2007: start BTX, every 12wks @ Stanford, 18 txs to Nov 2011
► Jun 2012: MVD surgery on 6/12 at UPMC

Not all of this was covered by insurance. I never did total my costs. While I think my dx and tx notes are good (if I do say so myself) there isn’t much cost data at all. I am extremely fortunate and grateful that I was able to afford my txs, especially the surgery because I flew thousands of miles to see the neurosurgeon that I had researched and selected (another hint at the possible subtitle of It’s hard to find data on treatment frequencies and outcomes. But I get ahead of myself…

It is because I took notes that I can share this even now in 2017, five years after my 2012 surgery and 13 years after the HFS onset in 2004. I took those notes because I knew I’d otherwise forget these details. I tend to put things behind me and forget, and just press on to the next thing. I usually don’t lament my ailments (well, I do cry to my wife, sometimes I sure can be a big baby).

And if anyone wants or needs more detail to fill in the blanks (e.g., my post-surgery regular pain scale reports (logged by my wife, the sweet angel, taking dictation in my blog notes while I was grimacing in pain), or the specific meds that were rx’d to me long before surgery, in a pathetic attempt to tx my HFS, or even why did we check out the White Turkey Drive In, in Conneaut OH? (BTW, good stuff, Maynard. Or at least it was back in Jun of 2012), just ask. I can also email that over. It’s like a blog.).

And if anyone is or was or knows someone on that HFS Yahoo! Group, I can be easily found by searching those emails on that HFS Summary above. It’s close to verbatim from my email signature. Every time I sent updates to that HFS group, I pretty much found my original thread and added to that. Even post-surgery updates, with pictures, I’d respond to and add to my thread.

Hey, I used to be a chem lab technician in a previous life, in the 1980s, and my lab notebooks back then were neat and pristine, and clear and exact. Impeccable penmanship, I had. Old habits die hard I guess. It was advanced composite materials and organic polymer chemistry, BTW. Our company basically built the Voyager of Burt Rutan and flown by his brother Dick Rutan with Jeana Yaeger (had to double check her spelling!), nonstop and un-refueled, around the world back in 1986. Sheesh, I sound old. But I’m not! I refuse to grow up. For you young snot-nosed whippersnappers who haven’t the foggiest of that which I speak, here is one Wkpd page for ya: https://en.m.wikipedia.org/wiki/Rutan_Voyager. Those were good times and it was neat meeting them.

So yeah, I learned how to take good notes. Wow that was thirty years ago…

Okay, moving along back to tx and dx…

Since the Jun 2012 surgery I’ve been completely spasm free! That cure was certainly a God-send. And I know this surgical procedure has cured many with TN. It is called the “Jannetta Procedure”, for its creator, neurosurgeon Peter J. Jannetta. (Wkpd: https://en.m.wikipedia.org/wiki/Peter_J._Jannetta). Jannetta (R.I.P.), of UPMC, pioneered this procedure for TN before realizing it also applies to HFS. More on Jannetta, and my surgeon, later.

I got ahead of myself. Back to My HFS Summary.

► Apr 2004: onset of left facial spasms; mild and infrequent
► Jul 2006: initial HFS Dx; spasms progressively get worse and more frequent
► Jul 2006: start meds for HFS, to Jun 2007 - tried six different meds
► Jun 2007: start alternative Txs, to Jul 2009 - acupuncture 35X, chiropractor 5X, facial healing massage, acupressure therapeutic massage
► Oct 2007: start BTX, every 12wks @ Stanford, 18 txs to Nov 2011
► Jun 2012: MVD surgery on 6/12 at UPMC

That means:

Apr 2004 - Jul 2006: I began noticing rare and random, yet repeated minor muscle spasms on the left side of my face. They started at about one every 2-3 months and then steadily increased in frequency and strength to about one every 2-3 days. Systemic and repeated, in an infrequent and random way. Though the spasms were very minor, they were somewhat regular. When I say muscle spasms once every 2-3 days, e.g., that is a rough average over about 1-3 weeks. Before “blogging” this in an email to the HFS Yahoo! Group, I logged this info into my Palm Pilot. I can be anal that way.

Jul 2006: the meds I was rx’d, by a well-meaning neurologist in San Jose, had terrible side effects on me. One basic thing did not make sense: why should a system-wide, overall body cure (pills dissolved in my stomach and those meds carried in my blood stream to all nerves and muscles, not just the facial ones) work on a highly localized problem? Not ideal to me, and in short they did not. They helped a little bit, but not well enough. I didn’t like the side-effects, and I didn’t like the system-wide solution to a localized problem approach. Meds might work well for another, but not for me. I tried those six different meds for a year before moving on.

Jun 2007: that same SJ CA neurologist recommended acupuncture, which I tried. It was, umm, quite interesting to say the least. There was some reduction of spasms, but nowhere near enough. And I went 2-3x a week, even more. And I tried those other things, throwing dollars like darts to see which would stick on the bullseye. The spasms increased in frequency and strength.

Oct 2007: botox injections at Stanford, by a highly regarded and referred neurologist (and quite attractive, I might add! Hey now, talk about motivation to return for follow-ups!). I can do this.

Administering botox (BTX for short) is an art form. Injected in the wrong place, and the wrong muscles droop. Too much BTX, and the side of the face sags or does not respond to your stimuli (e.g., smile, frown, laugh, smirk). Can you say zombie? Fortunately my doc was the best, and it helped for a while. But BTX was always a band-aid that did not address the root cause, and that bothered me.

BTX works by deadening the muscle. It ‘stuns’ the muscles for about 12 weeks, and then when the BTX wears off the muscles reawaken. With BTX in effect, the input stimuli (nerves) still happens, but the output is a dead muscle, no contraction, no movement. The lights, they turn on, but there ain’t nobody home. This is how BTX as a beauty tx makes you look younger, you can no longer furrow your brow, e.g., and voila! No lines and creases. For 12 weeks, anyway. Hey, I can use all the beauty help I can get.

But underneath all that BTX, my HFS kept telling the muscles to fire, to spasm. With my face all BTX’d up, the nerves were yelling, “Jump!” And the muscles were saying, “Chill, dude.” BTX is a band-aid, as far as I and my HFS were concerned. BTX works well enough for many people, but because it didn’t address the root cause, it didn’t work for me.

Besides, that beautiful Stanford neurologist with the heavenly Brit accent, she was married. And so was I. Four years of her eye candy and pleasant conversation every 12 weeks were enough. It was time to for me to move on to something else. To someone else. I’d been doing my research, I’d been checking out profiles on match.com. I left the Stanford beauty with brains and great sense of humor for a younger man, some geek of a neurosurgical doc, way out in Pennsylvania.

During this time the spasms continued to increase in frequency and strength. BTX lasts about 12 weeks, and towards the end of every 12 week span the spasms were no longer masked by the BTX. The spasms were quite strong, sometimes fully scrunching the left side of my face, on average 30-45x an hour, and sometimes every few seconds. And sometimes several times a second. Fun, let me tell ya.

A quick self-hijack about BTX: for my first BTX injections, the injections were the day before I was to leave on a 24-hour, 1,000 mile non-stop motorcycle ride from home, essentially San Francisco, to Grand Junction CO. Stopping only for gas, and only gas. No pee stops!

I had no idea how BTX was going to affect me. Fortunately it wasn’t too bad for the first time, with half my face shot up with BTX. I was able to ride.

The main reason for the trip: the World Series, in Denver. My brother is a Red Sox fan and we met for Game 3 in Coors Field. He was slightly smarter than me, he flew LAX-DEN like the normal people do.

But, why did I ride instead of fly, or at least drive? Why, to qualify for and obtain a certification from the Iron Butt Association, a group dedicated to long distance motorcycle riding, of course. 1,000 miles in 24 hours is what the IBA calls a Saddle Sore 1,000, and for some sick and twisted reason I wanted that award! Who wouldn’t want the moniker off World’s Toughest Riders!? (images) Well, plenty, it turns out. And that’s no surprise to you, is it? But I wasn’t as smart, and I went for it, and pulled it off! Grand Junction via I-80 is a little over 1,000 miles from San Francisco, and then Denver was another 250. Well, since that World Series I’ve done 3 more SS1000s, and one was with my wife on the back seat. We have done some other sick rides, 2-up. She’s a little bent too.

Anyway I’ve gone long enough about that hijack, but it was right after that first BTX tx admin. It all turned out fine.

I’ll now move on to the data I was able to find that led me to my surgeon in Pennsylvania, but first I need a break. Questions? Just ask. Comments? Toss those here, too. Want to call me crazy for that ride, and those rides? Sure, go for it.

You want that hot Stanford neurologist’s name and number? I have it and I can give it to you, but it’s gonna cost ya. How much a got?

The Data: The big key to finding a cure was the data. I’ve worked with cancer registries and oncology management systems for 20 years. Data is key. Without data you are mostly guessing. From the data I found a surgical solution, and I also found neursurgeons who (1) had done many of this surgery, and (2) had independently-reported successes with it.

The Yahoo! Group for HFS gave me some not-clean data, but it was good enough. It was an old list, several years old, where people reported in with their own surgeries or treatments, who and where was it done, and what their results were. So the data was independent from the hospitals and surgeons, and was roughly objective. I pasted that into a CSV and then into XLS, and had to do a fair amount of work to massage that data to normalize it - much of the information was prose, non-standard words or phrases, and I had to map that to discrete outcomes for each data field.

Anyway, long story short I was finally, after quite a bit of work, able to get a sample, and from those I determined the following:

  • my best chance to a cure was to have brain (or, skull) surgery. MVD, Microvascular Decompression, was the procedure. (YouTube has some nice videos, and some can get your willies up when you think that THAT is going to happen to ME)
  • other cures or txs had inconclusive results: botox, meds, and some others that I don’t remember and now don’t care. With my experience over the preceding 7 years, I concurred.
  • I identified several surgeons who met my subjective criteria for enough surgeries performed, and enough patients reporting permanent success
  • I identified the definition for success to be completely spasm-free, even though some patients experienced some subtle and minor spasms before settling down to spasm free

Again, much of this approach applies to trigeminal neuralgia as well as hemifacial spasm. And if the root cause of TN is vascular compression of CN-V, then I posit that much if not all of this approach applies directly.

I now had a short list of surgeons and facilities to talk with. I called with a standard set of questions, asked each place the same questions, and compared their answers. Key questions I asked included how many MVDs had the surgeon performed, what percentage of surgeries were successful, and how did they define success?

I work in the medical device software field, and work with doctors, nurses and clinicians. Another factor they highly recommended is finding not just a well-practiced surgeon, but also a well-practiced surgical team. Nurses, anesthesiologists, MRI techs, neurologists doing the pre-surgery checks, etc., all are very important if not just as important than the surgeon. Good point, and so I looked for that also.

Bumped, to include the Facebook groups for HFS and TN.

HFS: https://m.facebook.com/groups/Hemifacial-Spasm-(HFS)-Worldwide-Support-Group-40558153414/

TN: https://www.facebook.com/trigeminalnauralgia/
These are serious diseases — especially TN, whose nickname is the suicide disease. HFS is no picnic, either. Even though I had my surgery in Jun 2012 and am cured, I’m still dealing with some lingering long-time after effects.

The FB groups are good for sharing one’s experiences with the diseases. I hope this info is helpful to anyone with either, but I hope more that nobody here needs this info.

I first found the SDMB from a web search (about relationships, not about HFS), so someone else might search and find this info too.