Here I am in my room at St. Joseph Mercy Chelsea Hospital writing letters home to my loved ones.
I have a spacious room, one once intended for two. It has a ton of space as a result. I have cozied it up with a sari quilt, a fuzzy leopard pillow, and a bouquet of peacock feathers from the feed supply in town. It will be my home for the next week or longer, so I wanted to make as home-like as possible.
Today I began the day with “rounds”. Unlike most hospitals, we go to our team in the lounge for rounds and meet with everyone at once. My team and I discussed treatment for the day and the week, and analyzed yesterday’s failures and successes. I was informed what doctors I would be meeting with, what medications I would be trying, etc.
As I walked back to my room Nurse Joan came and took me in to see the plastic surgeon. We discussed my last horrific experience with nerve blocks and he asked me to try again. So, I had occipital nerve blocks done. Six injections into the back of my skull, leaving me a numbskull. For the next six hours I track the result. So far, numb. Can’t quite tell if the headache is better or not. Can’t say the experience is pleasant. It is not, but it was not the horror show I experienced last time so whatever he did differently, I’ll take it.
Dad has been coming to see me every day. He sits in the comfy recliner by my side while I deal with treatments and headaches, reading a WWII book on his kindle. Sometimes he will tell me a bit about the book, a memory from my childhood, something about when he and mom met. It’s been a cozy time to get closer to him. I am beyond thankful for his presence.
I try to stay cheerful with silly touches like Ruby Slipper socks:
And letters from loved ones. Thank you to all who have sent them, they help a lot.
Today is a high pain day, but I managed to make my bed, eat some breakfast, and blog. My next mission is to take a walk and then I will come back and try the next medication on the list of hopefuls.
Tomorrow morning I take my fuzzy pillow and my comfort quilt and I board a plane for the Michigan Headache and Neurological Institute in Ann Arbor.
I don’t know how long I will be there, if they can do anything, what the prognosis is.
All the anxiety I have been staving off with everything I could possibly find just hit me right now, in the 5:30 am quiet of the house.
I somehow can’t believe my headaches have gotten so bad I am going into a special hospital for them, but here I am.
If you have spare prayers, please throw a little my way. I am casting about in a tiny boat on a huge angry ocean. This is the last big try, if it doesn’t work, there isn’t any other plan.
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.
The “NOIVE” of some nerves.
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.
What’s next?
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.
***
UPDATE
This is future-me:
Marvel.Wikia SheHulk Vol. 1:9
Managing life with chronic illness requires savvy spoons