What I Have in Common with Moby Dick, Mr. Roper and Rachmaninof

Much of the last few weeks I’ve been doing my research on Trigeminal Neuralgia (TN). A few interesting things I’ve learned include:

  • Norman Fell (aka Mr. Roper from Three’s Company) had TN, as did Jefferson Davis, Sergei Rachmaninof, Gloria Steinem, and Norma Zimmer.
  • A bit character in Moby Dick is noted for having it. “Didn’t that dough-boy, the steward, tell me that of a morning he always finds the old man’s hammock clothes all rumples and tumbled, and the sheets down at the foot, and coverlid almost tied into knots, and the pillow a sort of frightful hot, as though a baked brick had been on it? A hot old man! I guess he’s got what some folks ashore call a conscience; it’s a kind of Tic-Dolly-row they say — worse nor a toothache. Well, well; I don’t know what it is, but the Lord keep me from catching it.”
  • Due to the mysterious nature of the pain people over the centuries have tried a variety of things to “cure” it, including: blood-letting, exorcism, arsenic, bee and cobra venom, hemlock, tar on the face, searing the nerve with  hot iron, shock therapy, hypnotism, radiation and X-ray therapy and inhalation of trichlorethylene (now known as TCE).

Basically, it sucked to have TN before about the 1950s. It was then that Dr. Dandy hypothesized that vessels were compressing the trigeminal nerve. He began performing surgeries to remove the offending vessels, and people were finally getting consistent relief.

This is still the most promising form of getting relief from TN.

Turns out, I’m a great candidate for surgery, and I’m moving forward with that option. It will be months before it’s scheduled–if it’s scheduled (several tests will happen ahead of time); it will probably be months before I even get a consult. I’ll keep you posted.

For those interested, the surgery is called Microvascular Decompression (MVD). This site has great in-depth info about the who, what, when, why, and how of it, including illustrations of the open skull–if that sort of thing bothers you, consider yourself warned. But in basic terms, it’s believed that vessels compress the trigeminal nerve, causing my wackadoo pain. The  point of the surgery is to pad the nerve with Teflon, or separate it from the offending vessels.

Is it brain surgery? No. The brain is not operated on. It’s considered cranial surgery. And obviously, it’s still quite serious. Real risks include hearing loss in my right ear (to which Eleanor said, “Cool!”) or partial numbness in my face. Each happens about 1 to 2 percent of the time. Does that scare me? No. I told my mom this: I feel like I’ve lost 35 percent of my life to TN since I’ve had it. Besides the pain and the vivid dread of an attack, it’s affected work, marriage, family, and my social life. Dicking around with meds and trying to chase the pain away while coping with side effects that made me anywhere from forgetful and unfocused to suicidal is part of that 35 percent loss. If the meds even worked! Living at 65 percent is doable. Do I want to settle for that for the rest of my life? No. So, if I go deaf in an ear or have numbness, I’ll still get some of that percentage back.

My biggest fear? That it won’t work.

Published by jody sparks

Jody Sparks Mugele spent her first career in marketing writing and leading teams of writers and editors. After her son came out as transgender in 2015, she dedicated herself to advocating for the rights of the LGBTQ+ community. For two years, she led the Indianapolis regional chapter of PFLAG, a nationally renowned LGBTQ+ advocacy group. She has given many conference talks about parenting trans kids, healthcare in the trans community, and suicidality among LGBTQ+ youth. And with GenderNexus, an Indianapolis-based advocacy organization, she created programming and led support groups to work with parents to help their children through all aspects of gender transition. She recently moved to Northeast Georgia where she is excited to develop opportunities to continue to strongly and proudly advocate for LGBTQ+ members of our society. She also LOVES kitschy Christmas crafting!

9 thoughts on “What I Have in Common with Moby Dick, Mr. Roper and Rachmaninof

  1. IT WILL WORK. I was just telling Paul last night that I needed to email you today for an update. I mostly don’t like the “months” of waiting. WHY?? I understand the need to do tests first, but for pete’s sake, how frustrating that there is an answer and it’s still out of reach. I’m with you (though not quite at Eleanor’s level of enthusiasm) on the possible side-effects: bring ’em on. Deafness in one ear is preferable to the pain you’ve been enduring. Hang in there, hon.

  2. If you’re a candidate for it, MVD is a great option! I experienced my first hellish jolts of TN pain out of the blue in June 2009 when I was 37. I got an MRI and a diagnosis a month later–after an uneeded root canal. For a year, I took the anti-seizure meds, which left me sedated but my kept pain full strength. I decided to have MVD in July of 2010 at Johns Hopkins. Since then, I have not had anything more than mild twinges of pain (no electric jolts), and I am off all medications! My hearing is fine too (gotta love science!). I recommend the procedure because it gives you the best shot at long term, perhaps permanent, pain relief. I know you know this, and I am sure you’ll do research (if you choose to go with surgery) so that you select a treatment team that is experienced with this procedure. That will reduce chances of complications and increase the chances of success. There are great support groups on Facebook and with the Face Pain Association if you need to vent or want to touch base with real people who endure this condition. Keep in mind, though, that such forums tend to amplify the negatives, since folks who have been successfully treated tend to return to daily life and do not post comments online. If you wish to contact me for specifics about my doctors or just have questions, feel free to e-mail me. I wish you pain-free days ahead.

    BTW, I’m a YA author too–I write for the Bluford High Series. So we share an interest in writing and TN. What are the odds?

  3. I have TN too. I haven’t read your books, but this is a wonderful and clear description. If you get tired of YA, maybe you can write about TN (or maybe just a shorter piece or something). A lot of patients are really struggling.

    You are fortunate that you are a candidate for MVD – it sounds tough and the risks are daunting, but with an experienced surgeon it is your best chance to get better. I am not a candidate for MVD, but I am fortunate to have had good medical care. So I did get a good evaluation and explanation from a neurosurgeon, and I was also able to speak with some patients who had successful MVDs.

  4. I hope your team is able to relieve your 350.1, excuse me, the ICD-code for Trigeminal Neuralgia is not known the world over.

    Call me Ishmael, Gabrielle Giffords and Soldiers recovering from roadside explosions. I was on lunch break, employed as an LNA at a nursing home, when on 01/15/07 at about 5:43pm, I took a bite of a sandwich…

    Dentist (speculated Bells Palsy) – Oral Surgeon – Neurologist – Neurosurgeon(s), see also; Medical Specialist Friends;)

    I have had marvelous and caring healthcare professionals, from my local Elliot Health System, to Massachusetts General and Dartmouth Hitchcock Medical Center.

    Adverse reaction (Toxic Epidermal Necrolysis) to Carbatrol.
    Adverse reaction (Splotchy tongue, oral lichen planus)
    (1) MVD
    (2) Radiosurgeries

    I still have a toothache.

    Take good care, bob

    @dbobsnodgrass

    http://fpa-support.ning.com/profile/dBobSnodgrass

  5. I have had two MVD surgeries in the last 3 years, one on either side, and both have been successful. If you’re a good candidate for it I wholeheartedly recommend it. I think I lost a good couple of years either to pain, or to fuzziness from a huge cocktail of drugs. At one point I think the mix was lamotrigine, clonazepam, gabapentin, carbemazepine, diclofenac and morphine! Someone asked me before the first MVD if I was scared and dreading it – no, I was looking forward to it, because it was going to fix things and give me my life back. And it did. Fingers crossed for you.

  6. I didn’t know President Davis suffered from trigeminal neuralgia. I had read somewhere that he suffered blinding headaches at times though, which was probably the neuralgia.

  7. I too suffer from TN. I am bilateral. I had surgery on my left side (MVD) last June and it looks like I will be facing it again for my right side. This is a horrible disease. Hopefully you received long lasting pain relief from your surgery.

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