Tracking Medicines Post-Surgery

This is a purely practical post.  I had no idea how many medicines I would be taking after I got home from the hospital.  There are the medicines you take to treat your condition, and then there are the medicines you take to balance out the negative effects of the medicines that treat your condition.  I probably took three or four laxatives for several weeks.  I took Pepcid.  I had an oxycodone prescription, that sadly I had to use.  I had dexamethasone (a steroid that reduces swelling in your head and face).  I had an anticonvulsant.  I had acetaminophen.  After three weeks I had ibuprofen.  So many medicines.  And my brain wasn't working quite right to keep track of them all.

So here is your practical tip if you have to undergo brain surgery--get a blank notebook and write down every time you take medicine.  Your will feel like your bedroom is a pharmacy for awhile.  It may take months, but eventually you won't have to take so many medicines and you won't have to write them down.  But at the beginning, write them down.

It's helpful to know when you took your last set of pills, but another benefit of writing down all your medicines is that you will be able to see when your pain was better or worse over time.  My pain levels fluctuated, and I liked being able to look back and figure out what was going on with my body. 

Apparently people can come away from brain surgery with terrible headaches for up to a year (or forever).  I thought it was helpful to have my medicine list as a record of my pain.  I took oxycodone very sparingly and after a month or so I took it back to a local pharmacy that provides medicine disposal.  But I liked being able to distinguish when I was taking oxy versus acetaminophen versus ibuprofen, especially when I was living from one dose of pain meds to another. 

For about two and a half months I feared that I would never be off pain meds.  And then one night I woke up with terrible heartburn, and I worried that maybe taking so much Tylenol was hurting my system, so I cut back at lot.  Thankfully at that point my head healed enough that I didn't need to take so much, and by about three months post-surgery I was not taking any pain medicine regularly.  If this happens to you too, don't worry.  Your head takes a long time to heal, and you will probably get headaches more frequently after surgery.  It's okay, and it's okay to take medicine to keep you going when you need it.  Just be sure to ask your doctor before taking any new medicines.  You never know what type of adverse reactions could occur in your unique position.

Hospital Stay

My surgery was on Tuesday, September 19th, and I think I went home on Saturday.  My memory from this time period is so minimal.  In fact, my memory of a good chunk of October is really minimal. 

While I was in the hospital I wore a cap thing to protect my incision from becoming infected.  Katie, the physician's assistant, came to check on me every morning.  Residents came frequently.  I had a drainage tube attached to my head, and I'm pretty sure the reason I had to stay until Saturday instead of going home on Friday was because my head was still draining a lot.  My husband and I watched the non-animated version of Cinderella and another movie called Five Flights Up with Diane Keaton and Morgan Freeman.  Don't ask me what the movie is about.  I can't remember.

In the midst of all this inability to remember, I was able to put together that one of the residents went to the same medical school as one of my high school friends and that my high school friend taught a seminar this resident took.  All I can say is that the brain is remarkable.  Apparently my long-term memory was not affected by the surgery. 

I was thrilled that walking was pretty manageable compared to trying to walk again after a c-section.  I had had two c-sections before my brain surgery, so surgery to me meant struggling to poop and having a hard time walking.  Thankfully these were not my problems after brain surgery. 

The nurses gave me a ton of meds after my surgery, and I'm devoting an entire post to managing your medicine after surgery because it is really complicated.  One of the amazing, glorious medicines that you get to take after brain surgery is dexamethasone.  It's a steroid that reduces swelling in your head.  Some people say it makes them want to eat a ton, but I think it left a really bad taste in my system and I hardly wanted to eat at all.  Between the fact that the doctor cut through muscles that move when you chew (so I couldn't open my mouth wide for months) and the fact that everything tasted badly, I hardly ate for several weeks.  They also had me on several kinds of laxatives, Pepcid, oxycodone (for pain), and who knows what else. 

One day my husband brought our sons to the hospital to see me.  I only remember that they came and we took a picture of me in my hospital bed with them.

And that's about it.  The day I got home from the hospital, my cousin and his wife were in town so they came over for tacos.  My cousin went to get me some See's Candy.  And then I was so tired I went to bed before they left.  The next several weeks I would sleep a lot, but I think that helps you get better.

Keppra Allergy

I took Keppra for ten days.  (More about the prescription here.)  I started the day after leaving the ER, and two to three days later my life was flipped upside down.  The morning of Saturday, July 8th, I made plans to go running with a friend.  A week before being in Utah I could run five miles.  After a few days on Keppra, I could hardly walk.  We made it half a mile from my house, and I had to turn around and go home.  Breathing was difficult. 

I recorded the effects I was feeling from Keppra:

• Complete loss of appetite and rapid weight loss
• Small pimples all over my body (my skin was in so much pain that I could not brush my hair without wincing)
• Unbearable fatigue
• Shortness of breath
• Loss of coordination--it became very hard to write and grasp objects
• Inability to think or process information (I even had to leave one of my classes early because I couldn't teach anymore) 
• Horrible anxiety, worse than anything I had ever previously felt
• Inability to walk (I went from being able to run 5 miles to not being able to walk 1 mile)
• Sight problems--I could no longer see my computer screen without my glasses, even when holding it up close
• Muscular pain

On July 14th I asked the neurosurgeon about my prescription.  He said he couldn't do anything about prescriptions, but he gave me a referral to a neurologist at OHSU.  The only drawback was that my neurologist couldn't see me until August 2nd.  I nearly had a panic attack on July 14th and could hardly sleep that night.  With no doctor being able to tell me why I was taking the Keppra, I stopped.  Two days later, I was back to myself and felt incredibly relieved.

Before my neurology appointment I was so worried they would tell me I needed to go back on Keppra.  When the neurologist told me that anti-convulsants were unnecessary at that point, I was thrilled.  They also told me that if I needed an anti-convulsant in the future, they had a recommendation and would forward it onto my neurosurgeon.  I was so grateful to be taken seriously and get positive feedback.