Winter is not my friend. It’s not even my frenemy. It’s simply a clear, crisp, diamond-studded, fluffy-flaked, season of pure hell.
It hates me.
Whatever stability I manage to achieve with my headaches and TN is immediately compromised the moment the boiling pressure systems begin to crest the horizon of the fair Mile High City and I am trapped like Rapunzel in her tower until it all passes.
Except without any singing.
Or any golden tresses.
Or any fairytale solution.
Unless, of course, you consider these to be a fairytale solution:
I kind of think they are fabulous. How did I end up with them? I am glad you asked.
So here I was in my very dark room surrounded by pets and diligently preparing for the hospital stay in a little over a week by looking up non-slip hospital socks on Amazon. Mutinous thoughts of being stuck in a hospital for an undetermined period of time were sluggishly marching through my brain when I discovered that Foot Traffic has adorable non-skid socks!
I can’t tell you why having ruby red slipper non-skid socks will help me in the hospital and I am fairly certain if I tried to you would think I need to be there for ‘other’ reasons involving my brain. However, I can tell you I am happily ordering several pairs.
Maybe I will feature them on my video blog during my stay. If I, in fact, proceed with said video blog. After all, “It’s a fabulous idea to record yourself in the hospital and put it on the internet”, said no one ever.
I keep talking about this ailment I have, so whiskey tango foxtrot is it?
Trigeminal neuralgia, or TN for short because it’s a tongue twister even for the medical crowd, is a chronic pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain.
TN causes the nerve’s function to be disrupted, usually resulting from contact between a normal vein or artery and the trigeminal nerve, causing the nerve to freak out and malfunction. Chemical imbalance can also cause TN.
When you have TN, the slightest stimulation of your face, such as breathing, wind, cold, moving your hair back behind your ear, the kiss from your child, etc, can trigger an attack of of excruciating pain.
The pain can manifest in a number of different ways. For me, it does exactly that. I have an atypical presentation of the disorder, because I am special. (I no longer like being special, by the way, I would like to be dull normal please.)
I have a constant, ever present awareness in the left side of my face. Sometimes it feels like there is icy hot on it, sometimes it feels as though it is made of ultra fine glass. It’s not painful, per se, but it’s not pleasant.
I also have the attacks that come with the tiniest degree of stimulation. When I was first diagnosed with the disorder, I had the attacks rarely, but now I have them dozens of times a day.
Sufferers often initially experience short, mild attacks, but trigeminal neuralgia can progress, causing longer, more frequent bouts of pain, resulting in chronic pain and disability, including depression.
The attacks last from 30 seconds to ten to fifteen minutes. They have a dozen different sensations as my brain tries to make up it’s mind about what the nerves are telling it.
Brain: Dudes, seriously, are you actually being punched in the jaw, sliced along the cheek with a knife, set on fire, and doused in ice water, all at once? What is going on down there?
Nerves: … FEEL ALL THE THINGS!!!…
Sometimes I feel as though I have the worst earache ever, sometimes it’s a toothache. I have actually checked to see if I have a sore tooth by poking madly at my molars with tweezers. I stopped doing that after I realized it would likely eventually cause an actual toothache. (To my credit, I never poked madly at my inner ear with tweezers.)
Sometimes I feel like a lance has been driven from the top of my head down through my left shoulder.
I am not doing well.
However, I am lucky. TN comes with depression, cause, OW. It also comes with isolation. I have my parents, Dan, my children, and a number of loving friends who have reached out, visited, sent loving texts randomly, called, emailed, and let me know I am not alone. I have support. I have people to hold me when I seize up and to remind me to breathe through it. I am going to be OK.
TN is first treated with medications, such as anti-convulsants and muscle relaxants. When that doesn’t work, they move onto brain surgery.
(From the Mayo Clinic Website)
Surgical options for trigeminal neuralgia include:
Microvascular decompression. This procedure involves relocating or removing blood vessels that are in contact with the trigeminal root.During microvascular decompression, your doctor makes an incision behind the ear on the side of your pain. Then, through a small hole in your skull, your surgeon moves any arteries that are in contact with the trigeminal nerve away from the nerve, and places a pad between the nerve and the arteries. If a vein is compressing the nerve, your surgeon may remove it. Doctors also may cut part of the trigeminal nerve (neurectomy) during this procedure, if arteries aren’t pressing on the nerve.Microvascular decompression can successfully eliminate or reduce pain most of the time, but pain can recur in some people. Microvascular decompression has some risks, including small chances of decreased hearing, facial weakness, facial numbness, double vision, a stroke or other complications. Most people who have this procedure have no facial numbness afterward.
Gamma Knife radiosurgery. In this procedure, a surgeon directs a focused dose of radiation to the root of your trigeminal nerve. This procedure uses radiation to damage the trigeminal nerve and reduce or eliminate pain. Relief occurs gradually and may take several weeks. Gamma Knife radiosurgery is successful in eliminating pain for the majority of people. If pain recurs, the procedure can be repeated. Because Gamma Knife radiosurgery is effective and safe compared with other surgical options, it is becoming widely used and may be offered instead of other surgical procedures.
There is a third procedure where they “Burn the nerve” causing complete facial numbness on that side. I was advised against that procedure because young people go quite crazy when they have a completely numb face. Apparently older people do not.
I am starting with the Gamma Knife radio surgery. My hope is two-fold. One, I will no longer have the TN pain. Two, I will become She-Hulk. (She was a lawyer, I totally fit the comic book.)
I can try the Gamma Knife twice before the other surgery. I can do that surgery once. I was told this will come back after every procedure. It’s just a matter of time.
I was also told they have no idea what causes it. Some people think it’s age, some people think trauma, some think virus. All they know is that it is more common in women than men, and it sucks. (That’s the official medical term.)
So there you go, that is one of the two ailments I have. The other, chronic persistent migraine, I will save for another post.
Have a good day y’all, I am off to play Eidolon and drink coffee.
It begins with the warmth of several small furry bodies as the cat and dog nuzzle close to combat the winter cold. Then the boyfriend, all strength and spicy smell, cuddles closer before leaving for work dropping kisses on my cheek and tucking me in.
When it’s time to wake the young man for school we wrap him in fleecy layers of sweaters and pants and balaclava’s to keep out the cold. Then he wants cuddles too, all soft and cozy, like a giant moving teddy bear cuddled in my lap.
Now back in bed with the fireplace on, the dog against my leg, and a cup of piping hot coffee sliding, sip by sip, down my throat.
Because it can produce a few notes, tho they are very flat; and it is nevar put with the wrong end in front!. Lewis Carroll.
Because it’s satisfying to be in the presence of both. Me.
I have the use of a lovely antique writing desk thanks to my parents. It’s a happy little desk, about three feet wide, with a fold out writing surface, spindly long legs, and a number of little nooks and crannies within it for my ink and pens. It inspires correspondence and brings a sense of peace to me when I sit down to it of a morning. I have paired it with an antique wooden chair with a soft cushion on it and it sits beside my bed providing constant temptation for letter writing.
So if you want a letter, send your address to email@example.com.
Daddy is coming with me to Michigan and staying for the whole time I am out there. What before seemed like a terrifying hospitalization far from home now seems like a chance for a cure. I will still be tested every day, poked and prodded, drugged, and possibly even operated on, but each day I will see my father. Each day include a visit from my fiercest protector and best advocate. I will not go through this alone.
When I was in college I took a marketing class. In this class I learned that during the 1950’s a man invented a closed plastic mousetrap that would capture the mouse and kill it as effectively as the open wooden mousetrap, all without the mousekiller having to see or touch the mouse. This new and improved mousetrap was only a few cents more than the wooden trap.
He went out of business.
You see, despite being designed to be disposed of, the trap looked fancy enough that housewives across the U.S. were cleaning out the traps and reusing them, they looked to expensive to throw out. As cleaning out a dead mouse is revolting, they quickly went back to the wooden mouse trap we all pretty much use today.
It’s all in the presentation. If the marketers of that mousetrap had made it look less attractive, we could be using their trap today.
I have had a paradigm shift this week in the way I view my illness.
I have had migraines since I was 12. My family has felt sorry for me, my friends have commiserated. I have dealt. Then my trigeminal nueralgia came along and for the most part, we all treated it like a different version of the migraines. Something really unfortunate that I just have to cope with. Something without any real cause that needs medicating.
Until yesterday. A ha ha ha until yesterday.
Yesterday I met with a neurosurgeon. First of all he made it clear that I have a condition that is different from the migraines. It’s an operable condition. There is something physically wrong with my trigeminal nerve.
Then he explained my options. I can either have gamma radiation rays aimed at my brain to permanently disrupt the connection between my nerve receptor and my face, or I can have inpatient brain surgery where they cut a hole in my head and insert a pad between the blood vessel and my nerve. Both have a chance of causing permanent numbness ranging from occasional tingling to complete “I just had a root canal” numbness. Neither is a permanent fix. Apparently my TN will always come back. There is a third option but I am too young, I can burn the nerve off completely. There is a 100% chance of complete face numbness with that one.
Suddenly I wasn’t dealing with migraines any more. I wasn’t facing just migraine management and pain control. I was facing brain surgery and a physical nerve condition that has been treated for over 50 years but is still largely not understood. No one has any idea why the trigeminal nerve suddenly decides to fire randomly throughout the day and send shooting pain through my face. Some think it can be caused by age, some think head trauma, some are trying to link it to a specific virus, but as of now, they do not know.
All they do know is they can stop the shooting for a while by cutting open my head or shooting me full of gamma rays.
Okay. Gamma rays. It’s an 85% effectiveness rate versus a 95% effectiveness rate. There is a small chance I could be permanently numb, but I like to believe there is a small chance I become the incredible hulk. (Though Dan says I would be the credible hulk because I would back my claims up with citations.) Two days of feeling not so great and then I see if there is any improvement.
I can do the GammaKnife twice and the surgery once. If those don’t work, I can burn the nerve.
Honestly, I am freaking out. Now I am crying and scared.
In 18 days I ship off to Michigan to be hospitalized for 24 hour in-patient treatment. I am looking at brain surgery. My cardiologist is testing for PFO ( a condition where a small hole in the heart is the cause of migraines.).
The presentation has changed. I can no longer believe I am simply managing a worsening condition. I now really feel as though I am falling apart.
Hope is supposed to be a gentle feeling, but yesterday morning I got the call from the Michigan Head Pain Clinic telling me I fly out March 10th for my evaluation. The hospital, somehow, is in network with my insurance. A phone call to the insurance informed me they were already mid-process on approval for the hospital stay. This crazy aggressive in-patient headache and face pain treatment possibility has become a reality.
Hope leapt out at me like a ravenous tiger and began devouring all my stoicism and outward calm. I began to feel tears well up within me. Oceans of tears began flowing upward within me as the hope swelled into an unstoppable force of feeling. I might actually come out of this with a working treatment plan. I might not have to wait years to get this together. I might be OK sometime in the near future. I started shaking with the feelings coursing through me.
All of the sudden in the course of two hours I was on my way to leaving Colorado for a new place to see specialists I have never met for intensive evaluation and possible hospitalization with no end date in site. I cried several times yesterday, even though doing so set off headaches. I am simultaneously terrified and hopeful. This clinic is supposed to be the place where they can try all the treatments, immediately, via IV and determine side effects and effectiveness without waiting months for ramp up. It’s also the place where they can teach me how to handle living with the disability through therapy, physical therapy, and more. It is the only clinic designed for migraine patients in the world, the only place where people like me, people who are considered “challenging” by every neurologist they see, have a real chance at symptom management. While I may be spending weeks at a hospital in the middle of Ann Arbor Michigan hooked up to an IV and being pumped full of god knows what, I am supposed to leave it with a treatment plan designed to give me a workable life.
I might have a workable life, sometime in the next two months. This nightmare could be under control.
Managing life with chronic illness requires savvy spoons