One thing that chronic illness patients are, unfortunately good at, is adjusting to new health turns.
For lack of a better description, our bodies seem more fragile when it comes to being and operating to the best of their ability. Every new turn – or curve, as the tagline of this blog talks about – is just another part of our life that we have to come to terms with.
A Personal Story
So to say I was less-than-impressed when I was diagnosed with Trigeminal Neuralgia (TN) last September (2020) is an understatement.
I was first made aware of the disorder in high school when a colleague told me about her daily struggles with TN. Even when I started down the road of having my own health struggles in 2013, I always thought, “At least I don’t have that.”
TN was my ‘worst case scenario’ disorder.
Going to the dentists expecting a root canal and being immediately referred to a neurologist was quite a jolt. I left the dentists office that day in tears knowing that things were about to be a little worse for me.
Most days I can handle that. I face each day, rest as much as possible, and mitigate pain when I’m able.
But TN was going to change things. I very rarely have health diagnosis that are visible. For the first time, I was talking to a (series) of doctors about a non-invisible illness with a visible cause.
Part of me was relieved that I didn’t have to spend time proving I was sick.
The overwhelming majority of me dreaded the consequences of my new diagnosis. Was it a tumor? Was it Multiple Sclerosis? Would they be able to see the nerve compressions or was I going to be a mystery case?
Understanding TN and Rare Diseases
Unlike my Fibromyalgia and accompanying diagnosis, TN is considered a rare disease (or disorder). According to congress, that means less than 200,000 Americans are diagnosed with it.
According to the National Organization of Rare Disorders, TN is only diagnosed 10-15 thousand times in any given year. Almost all of those diagnosed have pain on a single side of their face.
Count me unsurprised, then, that I am part of the 2% of folks to have bilateral TN, which means on both side of my face. After all, nothing about my health follows the normal route and I like to ‘make things my own’ as my husband is fond of saying.
In case you are part of the blessedly unaware part of the world who has no knowledge of TN, it is affectionately referred to as the ‘suicide disease’ because of the staggering and almost un-survivable amount of pain it puts you through.
As a matter of fact, I described the pain to my dentist as exactly that. It’s the type of pain you don’t know how to survive.
It’s caused by problems with your 5th cranial nerve, which controls sensations to your upper, middle, and lower face/teeth area on one side (with an exactly similar setup on the opposite side of your face).
Depending on your cause (tumor, MS, nerve compression, bad luck), your treatment options very from medication to various procedural and/or surgical options. This isn’t a medical piece so I won’t drag you through all the details.
Suffice it to say, as usual the medicine to fix one issue creates a laundry list of other issues (for me) so I’m currently scheduled for surgery on April 15.
To have or not to have brain surgery
Of course, jumping right to brain surgery is…well…crazy.
But if you’ll allow me, I will share the several reasons I’ve made the decision to move forward after only 8 months of pain from my TN.
Is the medicine working?
In my case, I can say partly. Most days the medicine keeps the pain mostly at bay – it puts me at a solid 5 instead of 10+.
But it also makes me high. Like really high. Dizziness, unable to think of words. Flushing in my face and eyes. Exhaustion.
And the puking. Oh lord the puking.
But the thing is, the pain has progressively gotten worse in the last 8 months and I have no doubt it will continue to do so. So what happens when, in a few months, I need to up my dosage again? Because I guarantee my body won’t handle the side affects any more.
So in summary, no the medicine isn’t really working for me.
Do you have non-surgical options?
Not really.
Technically yes, but they all damage the nerve instead of trying to solve the issue at the root – pun intended!
I am young and have the possibility of at least 5 years of pain free-ness with the surgery. Maybe even more. I would rather take my chances with fixing the cause than causing permanent damage to the nerve that could and likely would result in other issues.
Additionally, both my neurologist and neurosurgeon both indicated that I stand the best chance with microvascular decompression (MVD) to remove the venous structures irritation my nerve.
Other considerations
During my MRI, it was discovered that I have a rather large vein malformation in my cerebellum, exactly where my trigeminal nerve sits.
The exactly wording from my doctor is, “this combination of already rare diagnoses is an extremely rare, complex and potentially threatening situation.”
Fortunately I’ve since had an cerebral angiogram that indicated the veins are not an additional threat because they are function normally despite their abnormal appearance.
BUT…
It does indicate, at least to me, that the issue will not a) be getting any better and b) be improved by non-surgical means.
So where does that leave us?
Brain Surgery and Bringing it all together.
Brain surgery. Believe it or not, I was perfectly normal for a large chunk of my life. Healthy and active and high-achieving.
And now I’m having brain surgery. Which gives me so much more sympathy for those out there who face terrifying surgeries on the regular. Because so far mine have been…not at terrifying as brain surgery.
On the plus side, my stepkids refer to me as Smom. And after I have a metal plate on my skull to cover the hole that will be drilled to access the nerve, they are looking forward to referring to me as Robo-Smom.
We find humor where we can because I’m pretty sure we’re all pretty intimidated by the prospect of what April 15th will bring.
So to all those out there who have found me because you’re desperately searching for TN info, at least know you’re not alone. And in a few weeks I’ll be able to tell you that there is hope and options.
Until then, know that I’m on your side and I believe you. Let me know in the comments if you have any questions!!
Don’t forget it. Pin it!
