Life After Brain Surgery

A week ago my family was all meeting up at a parking garage outside of University of Maryland Medical Center Baltimore, gathering our belongings necessary for the long day ahead, and rushing inside to get to where I needed to be by my 5:30 appt time. Sadly, the hospital sent us on a long run around until we finally landed right where we needed to be, but we got there. Tension was high among the group, of course. The nervousness in the air; palpable.

I was asked if I was ready, more times than a few. How do you answer that? How are you ever ready to risk leaving your family behind? How are you ever ready to risk not coming back to them the same as you left them? So I lied. I was ready, yes. I lied and said I was fine. I lied and said I was going to be okay. I was petrified.

Questions began, IV was started, prepping was moving at the speed of light, but I was still stuck. Lingering, waiting for my entire family to hug me all at once. What would be my last thing to say to each one of them? How do you decide that? You cannot scare the kids, Kristen. You cannot upset your sisters, Kris. And my God, don’t let my parents feel my fear.

Last night I was asked what I felt in those moments. What was it that I told myself to help me get through it and make the final decision to go through with it.

The answer is my life. I wanted my life back. The vibrant, exuberant, fly by the seat of her pants girl was gone. She was replaced long ago by a zombie of a woman that was barely surviving this world. She could no longer head out on grand adventures, planned or otherwise. She spent her days hardly able to make it up and down the stairs let alone to a school event with homemade brownies.

She couldn’t make it to concerts with her sisters anymore. She had to cancel plans with friends more times than a few. She couldn’t get outside and run around with her two sons anymore. Life as she knew it ceased to exist.

But this morning. 7 days after the scariest decision of her life, that girl woke up at 5 am without an alarm clock, went downstairs without a single creaking or aching bone (stairs are a different story), and made herself a cup of coffee. Do you realize how long it has been since that has happened? I won’t count the nights where sleep never happened and I got up at 5 to start a day after a night of no rest. I’m talking actually slept for hours, woke up, went down, and made my own damn coffee??

Let’s ask my little baristas when they wake. I bet ya it’s been a while.

Good morning, world. It’s good to be back.

Little Things

So yesterday I broke down several times. Surgery is one week away. So of course my nerves are a wreck. It’s normal. I’m told I wouldn’t be human if I wasn’t worried. But let me explain why I broke down yesterday.

I was cooking more meals to freeze for the kids to have during my hospitalization and recovery. My oldest son was practicing his trumpet. (actually a 1956 coronet which is so bad ass) I decided to pick it up and wow him with some things. Ya see, I taught myself to play the trumpet when I was 10ish. Yep, picked one up and taught myself. I was incredibly talented. I say this not to brag, but just to say I am confident in that fact. My talent was passed to my kids, each knowing how to play but only my older son choosing to play. Anyway….

So I played a few scales, a little improv, and then it happened. The damn nerve in my face fired like crazy. Electrical shocks down my jaw. The hammering pain in my bones of my face. And reality hit me.

Even though I don’t play regularly, it is something I do enjoy. I love to just play and reminisce about my youth and my time in band, both concert and marching band. How I was chosen as a freshman in high school to play with the University of Maryland Eastern Shore band for commencement that year. How much I loved having solos during concerts. How I know it was something that made my parents proud. And it truly was a passion.

Now, I can’t play. And that devastates my heart. If they can’t fix my nerve disorder with this surgery I will not be able to play. Ever. A little thing with a huge impact.

My heart is hurting. My soul feels like it was a personal blow. She is weary. She is broken.

Little things can bring with them the misery of a thousand broken hearts.

Screaming in Silence

Pain, ripping flesh, breaking bones, searing flames of agony.
This isn’t torture. It’s my normal.
Tears flow down swollen cheeks to meet the pool gathered on my pillow. How many more nights will this flare last?
The drill in my ear, pressure building. Electric shocks through my jaw. Someone stop it.
Turn off the power. Cut the nerve. Rescue me. I’m dying. Please help me.

I wrote that poem in the middle of a flare up of the neuralgias I love with. They are always constant, but some days they flare so bad I cannot function. It’s unbelievably frustrating. The pain is beyond what the human body should have to endure. 10 days to surgery. I am so ready for this to be done!

~Kristen

Tests Approaching: Fear Rising!

Later this week I will travel 3 and a half hours for additional testing and another visit to a specialist. This specialist, an ENT, will be able to rule out any potential structural issues inside my ear that could be leading to the pain. The neurosurgeon doesn’t think this is the case, but wants to make sure he rules it out before we move forward.

I will have an additional MRI done with and without contrast. Similar to ones I’ve done in the past, but I don’t recall ever having the contrast. I also haven’t ever had one that will show quite as much detail as this one will. This will show thinner cuts which will allow the neurosurgeon to see more detail of the vascular and nerve systems within that area of the brain. We are hoping this will show what he needs to see that will help determine how involved the surgery will be.

I have decided to take this trip alone. Partly because I don’t want anyone else to have to sit around while I’m in the machine and doctor’s offices all afternoon. But also because I am afraid of what will be found and I honestly would rather take bad news alone than with someone else. I’ve always done it that way, so it seems normal to me. I’ve been alone for every other crappy diagnosis, so why not this one, right?

I have this fear, and I know it is based off of a really slim chance, but it’s still relevant in my opinion. I have a fear the doctor will find a tumor compressing all of the nerves and more than just a simple vascular compression. With this fear, one would think that I wouldn’t want to be alone. But I really feel like I wouldn’t want anyone looking at me during my initial reaction to something like that. I would want to process it alone before telling anyone.

I know that the success rate of this upcoming surgery is very high, but I also know that risks exist. As the appointments get closer, and surgery will be decided, I am more and more nervous of the what ifs. I know this particular post is a bit of a whiny mess of words, not really making much sense.  Please forgive me. Perhaps I will have something a bit more coherent as the time draws closer.

Kristen

LIFE BEFORE BRAIN SURGERY

Friday I was informed that I am going to need brain surgery. More invasive surgery than previously discussed. And it is a scary, hopeless feeling. What if something goes wrong? What if it doesn’t even fix the issue? Plus a million more questions. Friends have told me to think of the positives. To look for the end result. And to consider that if it’s fixing an issue, then just go for it. But those friends are not able to speak from their own personal experience. They aren’t the ones that will lay on that table while strangers slice them open, remove a piece of their skull, and go digging around extremely close to their brain stem! I don’t know if you realize just how essential the brain stem is; oh ya know, just essential for LIFE!!

And what about recovery? My kids? Work? Life on a regular basis during my recovery? Who will help me? Who will care? The questions are swirling and won’t let me rest. I’ve gone from tears to laughter. Tears because of the fears and laughter because of the stories I will tell a year from now when someone notices my scar that I will be rocking. Shark bite? Nah, too played out. Jumped by a gang of clown ninjas? Maybe!

Thanks for reading my random and scattered rambling. This is the first of many posts as I trudge down this new path. I’m not sure why these cards have been dealt, but I do know that these nerve conditions picked the wrong girl!

 

**Image is my own.

Life With Chronic Illnesses

A couple weeks ago I visited my rheumatologist to discuss my fibromyalgia. I haven’t had too many “bad” days, so it was just a routine visit to discuss meds and whatnot. He informed me that a new medicine I was on (prescribed by neurologist) would likely lower my white cell count causing me to have difficulty with fighting off infections. Yay me.

Today I got about 40 needles in my face, head, neck, shoulders, and back. These needles, though incredibly painful, allow me to function. They allow me to get up out of bed and at least try to be normal. These needles are botox for migraines.

But before the needles happened, I had to discuss some weird side effects from that other medication (mentioned above). I explained to my neurologist what had been going on since increasing the dosage. Skin has been peeling off of my fingers and my feet. I’ve been sick with what feels like the flu. Turns out I am severely allergic to the only medicine that was keeping another chronic condition semi-tolerable. A condition I visit a neurosurgeon about tomorrow. A condition that chose me as one of its few victims this year. Trigeminal neuralgia. So tomorrow I will visit University of Maryland Neurosurgery to discuss surgical options for this pain, also known as the suicide disease.

Have you any idea the fear involved in deciding on a procedure that uses radiation to essentially kill a nerve right where it exits your brain? And even though the pain is the worst I’ve ever felt in my life, this procedure scares the hell out of me! I realize that with the 3 conditions, also known as my pain trifecta, I am not living the life I wish to live. And I want my life back for sure. The risks, though; I’m just not sure I’m ready for them.

At this point, I am not medicated since I had to stop the one and the other makes me way too antsy. I will struggle through one more night of insomnia tonight before making my way on my 3 hour journey tomorrow to see the surgeon. I’m scared.

My New Normal

Yesterday I was diagnosed with now a 3rd pain disorder… Er disfunction/disease/ailment/illness that causes pain. I don’t even know what to call it. All I know is I’m really over it.

I’m over not being the woman I want to be. I’m over not being the mom I was; the mom my kids deserve. I’m over people questioning my constant illnesses and my constant pain. I’m over people making jokes when I slur my words or when I walk with a limp. I’m over this daily struggle.

But it’s my new normal. I have to learn to deal. 3 years ago I woke up with a migraine that never left. Thankfully, botox injections ease them enough so that I can function. Almost 2 years ago I was diagnosed with fibromyalgia. That was also a major change and adjustment. One I still struggle with daily. And now trigeminal neuralgia. I do not know much about it yet other than it’s rare, it’s painful, it can happen to anyone, and there is no cure; only the attempt at treatment.

I am not looking for sympathy or anything. I am primarily writing this just so I can get it out. So I can face the music and say to myself, “this is your new normal so learn to deal”….

I’m not sure what the future holds or if the meds will help me. I also don’t know what fresh hell awaits me for next year. Anyone wanna place bets? I’m kidding, don’t be so sensitive!

Until next time….