Today is October 7th, and that, my friends, is also Trigeminal Neuralgia Awareness Day. I bet you didn’t know that. A few years ago, I would have been right there with you. The first time I stumbled on the words ‘Trigeminal Neuralgia’ I had to sound them out. And as I kept reading, my heart rate sped up and my breathing tripped… because this, this beast, was what my was torturing my daughter.
So, today, I take a little departure, and tell you about some of the travel I’ve never blogged about. In honor of TN Awareness Day, I’m sharing a little of why, every year since 2012, we travel to Orange, California.
Trigeminal Neuralgia: (Bare with the Medical for just a moment)
Our Katie has a very rare, absolutely excruciating, facial pain condition called Trigeminal Neuralgia, or TN for short because that’s a mouthful. She also has Geniculate Neuralgia, but we rarely tell anyone that because even doctors have no idea what that is.
SO, a little travel blog departure for a biology lesson (I’ll keep it short, I promise!)… Classic or Type 1 Trigeminal Neuralgia (what our girl has) is usually caused, the experts believe, by a combination of two factors: First, the person has a flaw in the myelin (protective covering) that covers their cranial nerves. For some reason, it is not strong, and with irritation will break down. Second, that person must have something compressing their cranial nerves in some way. This may be as scary as a tumor, or as fluke as the nerve attaching somewhere weird it shouldn’t, or having something literally growing through it. Most commonly, it’s from a blood vessel laying on or looped around the nerve. Years of this contact is enough to rub that flawed myelin off the nerve, and the nerve starts firing like an uninsulated wire with the slightest stimulation. If this is happening to the the Trigeminal (5th cranial) Nerve, which supplies sensation to your face, your stabbing/electrocution-like pain will be in on side of your face, and you have Trigeminal Neuralgia. If this happens to the 7th and/or 9th cranial nerve, that pain is Geniculate Neuralgia, and the pain happens deep inside your ear.
It’s called “the most painful disease known to man” and other lovely nicknames, and my girl has it.
Let’s now leave this lovely little discussion.
Why Southern California?
Ok. Sorry. I just figured I’d explain, so you understand a little of why we were willing to seek out neurosurgeons up and down the East Coast, and then finally fly to California in search of someone who could help her.
So, Katie and I went to Orange, California, to the University of California, Irvine (UCI). The first time we went, we landed at Long Beach Airport (a totally adorable airport that looks like it stepped out of the 1950s) and went straight to Huntington Beach. At home it was already jacket & sweatshirt weather, and Katie had talked incessantly about wanting to see the beach. And really, if you are 12 years old, have an excruciating facial pain condition and one failed brain surgery under your belt already? You get to stand on the beach on a school day.
Katie put her feet in the water, chased seagulls, and explored the pier. When we got back in the car to drive south, she grinned up at me and said, “For a little while, I forgot all about TN.” You may not understand the emotional hit of those words, but as we pulled out of Huntington Beach that day, I was swallowing and blinking back tears. There weren’t any times we forgot all about TN back then. We still love Huntington Beach.
“For a little while, I forgot all about TN”
We drove south on the Pacific Coast Highway, toward San Diego, where a facial pain conference was going on. We drove through an adorable little beach town, and I threw a pen at Katie telling her to write down ‘Laguna Beach’ because we had to come back for a visit some day.
And we did, just this year, make it to Laguna Beach:
On that first trip, at the San Diego conference, I faithfully duct taped the air vents in our hotel room shut (just that breeze could set off her pain) and she twice had to return to the room to lay down and wait out pain, even through the mind-numbing amount of meds she was on. (Because of the meds she was on, she could not count backwards from 10 some days. Try learning algebra like that! ) But we still went to dinner on the waterfront with new friends who understood what we meant when we said “pain,” and Katie met another girl her age who was also on this path – a huge rarity.
After the conference, we drove back north, through the brown hills and taking an obnoxious amount of photos of the sea to our right… to University of California Irvine to meet with Dr. Mark Linskey. He’s not a Pediatric Neurosurgeon, but he’s one of the (if not THE) top neurosurgeons in the world treating TN patients, and he was willing to go to bat for us with the hospital to get our daughter treated there. (UCI is not pediatric, it took some finagling.)
We returned a few months later, this time for an extended trip so Katie could have the pre-Op testing, her 2nd brain surgery, and recovery. And I have to tell you, there’s no “How to Pack for Brain Surgery Across the Country” guide. Someone out there may want to get on that.
Surgery and Recovery in Sunny Southern California:
If you have to have TN, and have two brain surgeries for it, Orange, California isn’t a bad place to have to go. Sun and Palm Trees in January? Not bad. And we were able to keep ourselves from dwelling on what was in store.
Two days before brain surgery, Katie and I decided on a great way to distract ourselves from the endless medical testing and impending adventure that would be yet another surgery. One last roller coaster before the post-surgery restrictions set in.
And, one of my favorites taken at Disney that day, where it looks like there’s a spoon growing out of her ear:
Surgery was surgery. I’ll shorten it all up and sterilize the process, and just say… it hurts. It hurts, it’s hard, and no one wants to see their child go through it. I’ll spare you the pics of the staples down her head, and the ones taken through the microscope during surgery. You’re welcome.
It’s hard, but she says she’d do it again in a moment instead of taking the pain of TN in her life.
Recovery and Returning:
After being released from the hospital and continuing to recover at the Ronald McDonald house, she had a real struggle with when day and night were, sitting up in frustration for hours each night. When we decided to get her good and tired for bedtime, I made a call to a high school friend who had visited us and kept in touch. He lived, at that time, just down the hill from the famous Hollywood sign. How cool is that? So we took advantage of his amazing hospitality…
Yep, taking a little stroll up behind the Hollywood sign.
Ongoing Southern California Visits
Now, every year, we return to Orange, California. Back to University of California Irvine, to check in with Dr. Linskey and be part of ongoing research (Early Intervention with MVD for Pediatric TN, coming soon to a medical journal near you!). We always try to get to somewhere interesting for at least a little time – Laguna Beach and a stop at the Sea Lion Rescue, Downtown Disney, or a quick stop at the Doc Marten store. We can’t let it all be boring medical stuff (though we love you Dr. L.!)
And besides, with all she’s been through, I have no problem getting a little serving of SoCal in the middle of our dreary winter each year. So, for the forseeable future, we’ll keep making our little treks cross country, not for selfies and sightseeing, but because some travel just has to be done.
19 thoughts on “The Travel I Don’t Blog”
What a powerful read. How honest and touching… I love how you manage to talk about the lighter, sunny side as well. You and your sweet daughter are brave! I wish you the very best.
Thank you. ❤ Katie inspired us so much through it. If she was fighting the pain that hard every day, we couldn’t give up finding the help she needed.
I’m bowled over by how positive you and Katie have been. How is she now? Is TN something that has to be managed and monitored even after surgery? Hope you continue to have happy travels!
Thank you for stopping by. Now, she is doing great! Since this 2nd MicroVascular Decompression (brain surgery) 3.5+ years ago, she went through about 12-18 months of healing ups and downs and slowly decreasing pain episodes. She is now effectively Trigeminal Neuralgia & Geniculate Neuralgia pain free! Yay!! Now, she’s a high school junior, not liking Chemistry, loving French, and getting ready for a formal this weekend. Normal as anything. Most people are shocked when they learn what she’s been through. 🙂
Oh! And we go to annual follow ups with Dr. Linskey in Orange, CA. He is always checking her neurological response, and checking for any facial nerve deterioration – such as numbness or changes in sensation. But so far, she’s passing it all with flying colors. We continue to go back because he is tracking the progress of the kids he has treated, and has a research paper currently in the peer review stage. We want to provide all the data points we can!
This is such an inspiring story you put in while keeping a brave face. Hope Katie is fine and better than before now. Wish you guys good future!!
Thank you! She is going great! We are so excited she just gets to be a normal almost-17-year-old. So much better than the outlook she had just a few years ago. The surgery has been life-changing for her.
Really glad to hear that🙂
Thank you for sharing this personal story. I have a rare disease myself and know how hard it can be to not think about anything else. Travel helps me with that. It’s lovely to know you and your daughter can have fun and see the positives in difficult trips every year. Even though you say this is the travel you don’t blog about, I’ve found it’s so important to write more about my rare disease to both raise awareness and help myself become more confident and unafraid of it.
Sarah, I think you are so right. Especially when dealing with a rare disease, sharing our story is so important. Several other moms and I have actually started a FB group for the parents of kids with TN, and work to connect and help this rare group of warriors. I’ve been so impressed watching Katie grow in her boldness, discussing cranial nerves and myelin with her friends, teaching them about what she has faced. It’s a delicate line to walk, being bold and awareness-building, while not letting it overtake our lives – but we do our best.
I hope you are doing well. I know it’s tough when others don’t know about and/or understand your disease. Well-meaning advice, subtle comments… it can get exhausting in and of itself. It’s awesome you have found travel helpful! I think Katie has, too. Before her 2nd brain surgery, we actually spent time in Hawaii as a family, and just let ourselves enjoy and be distracted from the battle we had been in. It didn’t hurt that Hawaii’s mild weather was excellent for her facial pain! I filed that knowledge away, and will use it if we are ever in the battle again.
This is such a different post, cannot even imagine what you must have felt when you say ‘it hurts’. Wish Katie the very best for her future. And we must say that Katie is very brave, and lucky too, to have you by her side.
What a brave young lady!.. Indeed an inspirational post! Wishing you all the best and more travels for both of u!
That is indeed a different kind of post you expect to find on a travelblog…
Reading the other comments: Great to know Katies surgery was a great success. Yet,I still think this quite horrible (especially for a then
Thanks for sharing your story. TN is something I am familiar with because I have Multiple Sclerosis and it is somewhat common among people with the disease. Also my neighbor who has MS too, has battled TN for years. Thankfully after several surgeries in NYC she has gotten it under control.
In recent years I have had three surgeries on my hip. The second one, there were only 2 doctors who were skilled in the surgery. One in Germany, the other in Philadelphia close to where I live. Regardless of where I had the surgery done I was going to have to pay out of pocket because the procedure was not covered by insurance. I kept trying to justify going to Germany for the surgery because it meant I would get to travel as well. That was a tough justification since I had a doctor in my backyard who could do it. Ultimately I had it done in Philadelphia.
It seem you and your daughter made the best of a bad situation by adding some fun to the process. Wishing you both all the best. Happy travels.
What a great post. I love reading such an honest and open post, very refreshing!
So glad the surgery went well, but what a difficult journey. And yet there you both are, smiling though it. Great story, very well told.
I hadn’t heard of Trigeminal Neuralgia before this. Katie is such a brave girl. Hope she stays pain free always. And I’m happy she made it to the top of the Hollywood sign.
Loved reading your post. Thank you for sharing this personal story. Sharing your story about a rare disease is so important to raise awareness. I wish Katie the very best for her future !
My eyes welled up while reading this post. Thank you for touching my heart, I think I needed a good cry today. Sending much, much love <3 <3 <3 Katie, you're a warrior!