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