Things I wish I would have known before brain surgery

I’m a little over a week out from my surgery, and I’ll post more about that later, but right now, while it’s all fresh, I’d like to create a list of things I wish I would have known before my microvascular decompression .

  1. Your face is going be numb. The trauma to the nerve will leave you with diminished feeling on the side of the surgery and that takes time to get back. Also, eating feels weird and you’re going to end up with food on your lips because not feeling them means you don’t really know if you’re clearing them.
  2. Same vein, you’ll wake up with little or no hearing in that ear. Actually I knew that one, but I feel like this list needs that. That came back pretty quickly.
  3. You will not sleep laying down. Period. It is nearly impossible to get comfortable. Protip – prop up the arm of the side of your surgery, it will relieve the tension of your incision and make a huge difference. Also, recliners.
  4. Car. Rides. Are. The. Devil. Especially if your surgery is in Maryland where they repave every 25 years. You will feel every bump of the road.
  5. Ask for muscle relaxers. My biggest complaint has been about how stiff surgery made my neck, more so than the pain. It took over a day for me to get some, but I am actually off of pain meds all together and only take the muscle relaxers.
  6. Your hair will be so gross. They don’t take a lot of care to wash it in the OR and I’m not allowed to wash it until my follow-up. Thank goodness for the knit hats my friends made me.
  7. Hair growing back is itchy. Combined with the incision, it’s a new form of torture.
  8. The lifting requirement seems nearly impossible. Nothing heavier than a half-gallon of milk? This means I can’t get myself water from the pitcher or my laptop.
  9. Bending down is bad. Like dizzy bad. Between this one and #8, there’s no dog walking either.
  10. Also, stairs. And looking down.
  11. You may very well wake up from surgery with a bunch of tiny sores on your face. This is from the contraption that they put your head in to hold it still. This was a total surprise.
  12. Start taking stool softeners before surgery. #justsaying
  13. You can do this. This is a few days of being uncomfortable for 20 years of a better life. You are brave and strong and people love you and will help you and a week afterwards you won’t even remember is it was bad.

You are not your pain.

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Two rounds of pokadots

I wanted to blog about my journey with trigeminal neuralgia because I hadn’t found any blogs that really talked about the process, the surgery, what the recovery was like. Sure, I saw people talking about how much it sucked, which scared me, but I wanted more. So I thought I’d be the more.

Now my story is different. But I’ll start at the beginning.

Getting an appointment at Johns Hopkins requires filling out a medical history and symptom questionnaire, to which they take a week to review and determine if you’re a candidate for surgery. If you are a candidate for surgery then they assign you a doctor and then you’re off to the races. The questionnaire process is the longest bit of the entire thing, at least for my case. That and the fact that I went on vacation and couldn’t take the first appointment that they had.

Surgery was scheduled ten days out, which then became a race. Get things squared away at work, preop testing, make sure my house was in order, presurgery MRI, then the day of. It moved at lightening speed, until the day of surgery.

On the way there, and we were about ten minutes away, I received a call that the neurosurgeon wanted me there early. When I got there I was immediately taken back to preop. And that’s where things got shakey for a couple of days.

Johns Hopkins is nothing if not thorough, and when I had my MRI, the radiologists flagged an abnormality and then notified my doctor. What they saw was a possible Arteriovenous fistula and that had everyone in a tizzy. I had never heard of this before, but my awesome doctor discussed what this could mean, and it’s sort of scarey. There was some crying involved.

My neurosurgeon had already been in contact with the vascular neurosurgeon and said that I could proceed with the procedure if I chose, but he might get in there and have to close me back up depending on what he saw. My doctor then said that if I were his sister he’d tell me to not do the surgery and get this abnormality checked out, and that was enough for us.

That was on a Monday. By the time I was walking out of the hospital I had an appointment for a cerebral angiogram that Thursday to see want all of the fuss was about and a new surgery date the following week.

Cerebral angiograms suck. But my came back all clear. The vascular neurosurgeon thinks that the MRI contrast dye had just pooled in my vein making it look like it had a heavy flow.

So it’s now eleven days after my original surgery date and I am back on my way for round two. Fingers crossed.

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(Brain surgery requires that you have an MRI 24 hours prior to the procedure. They put these lifesaver looking stickers on your head to provide a road map so that the doctor can match photo with actual head. You get to wear them until surgery. It’s a great trend. Look for it on all the runways this fall.)

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Brain. Surgery.

I have been on a lot of medication. And high doses of it as well. And it’s not been the end all cure all that a cocktail of drugs should be. So following a particularly bad attack that took days to get over, my neurologist said the one word I was hoping to avoid ever since my diagnosis.

Surgery.

When I was first diagnosed with Trigeminal Neuralgia I did a lot of reading and research. I learned that this is a progressive sort of thing where at first the meds help and then they don’t and you need higher doses and then you move on to a second anticonvulsant and then that one stops working and then it’s surgery or hell, you pick. I went in to this thinking that I’d try to stay on a low dose as long as possible because I was going to slow that ride down or not need more drugs or something else stupid. My face had other priorities. I started on 300 MG of Tegretol and it just wasn’t under control and then it was upped to 400 MG and then I had the worst attack of my life and upped myself to 600 MG and that didn’t even stop it and then my lovely neurologist said 800 MG and start making appointments because they can take awhile (that depends on how far you’re willing to go for a neurosurgeon).

There are a few surgical options for TN patients, a menu, if you will. A less invasive with a greater chance of pain or facial numbness and weakness or an almost zero chance of pain for decades with an OMG-THEY’RE-GONNA-CUT-MY-HEAD-OPEN deal. Guess where I’m headed with this?

I made appointments at Georgetown University and Johns Hopkins. Georgetown was able to see me in October, Johns Hopkins wanted me the next week but I was going on vacation. Then my doctor went on vacation. Then I got to go up and meet him. And then I was scheduled for surgery ten days later. TEN. DAYS.

They’re cutting my head open. They will squish a sponge in there to make my face less angry.

And this is all happening very very soon. More soon than I’m prepared for.

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The Suicide Disease

It’s been a while. I kept telling myself that I would pick this blog back up, dust it off, and move forward. But where do you go when a thing goes from light-hearted and silly to deep and depressing and grieving? Silly just doesn’t seem right.

From my father’s struggles, I think I’ll now move on to my own. It seems like the place to be, and maybe I can help someone else out along the way and find my voice again.

I have recently been diagnosed with trigeminal neuralgia. Never heard of it? Yea, neither had I.

TN is an issue with the trigeminal (get it?) nerve in your face. For reasons no one is quite sure of, my face hates me. The feeling is mutual these days.

TN manifests itself differently for everyone. For me, it started as a sharp pain on my lower right side of my face when I was eating, like taking a bite and then getting stabbed in the face, sometimes with the added bonus of my right arm getting weak. This went on for months and I just stopped chewing on my right side.

Then it became multiple stabs so that it seemed to be a constant pain. I thought this must be my TMJ coming back. It was always in the afternoon and would last for hours, despite taking anything.

But I’m a bad adult and continued to shrug it off until the night that it was so bad that I was dizzy and my vision blurred and went white, and that was enough to send me to the emergency room to figure out what was causing this. Trust me, all the worst things were going through my mind – in addition to the constant knives.

A night ill-spent in the hospital and several tests later, I was given a depressing diagnosis and told to see a neurologist.

The thing about TN is that it doesn’t show up on CT scans or MRI, there’s no EEG that can determine if you have it, the basically determine that you don’t have anything else, but you have wicked pains in ¬†your face that don’t respond to pain killers. Then they give you anticonvulsants.

And those were magic pills. For a couple of weeks and then the pain was back with a vengeance and it is the most disheartening thing about being told you have a chronic pain condition. I have spent hours crying over the electrified knives being shoved in to my face and an inability to sleep. I understand why it’s called the Suicide Disease, because when your own face is your worst enemy and the act of eating is torture and don’t get me started on brushing your teeth, staying positive is hard.