Sunday, May 4, 2014

My Imperfect List of Top 10 Things to Not Do After Brain Surgery

Disclaimer:  These are the things that stand out most to me. Use your own judgment and always discuss with your doctor when in question.  THIS IS NOT MEDICAL ADVICE.

My Top 10 Things to NOT Do After Brain Surgery:

10.  Don't try using a WEDGE pillow- the people that  bragged on these things should be strung up- they are miserably uncomfortable.  Use pillows you love and stack them. You will not be comfortable laying completely flat for at least 12 months because this increases the pressurized feeling in your head. I was determined the people that recommended this expensive sleeping apparatus knew what they were talking about and wrestled with it for a few weeks before actually returning it to Bed Bath and Beyond (they are about $59).
9.   Don't let your narcotics dictate your food choices.  To me opiates whisper these two things in my ear- "Cheez-Its" "Reese's Peanut Butter Cups". Have a plan beforehand.  Whomever your caregiver firm.  They will give you whatever you say you want to eat when you have a fresh zipper in the back of your head...This is FACT.  Junk food on an already compromised adrenal system will result in a weight management nightmare.
8.   Don't go home without a prescription for nausea medication and muscle relaxers.  Oddly enough, the docs are good at throwing out opiates but tend to forget these other two very important pharmaceutical jewels.  Ask for sublingual Zofran-it works quickest-  and your favorite muscle relaxer. If you don't have a favorite, borrow mine: Flexeril 10 mg.  Otherwise when you throw up..and you will throw up, (a combo of dizziness and nausea from the pain meds..) you will have painful spasms in your neck and shoulders (guess how I know?!)..head these off at the pass..ASK FOR THE DRUGS!
7.  Don't skip taking your stool softeners.   No one likes to talk about poo.  Poo is not a popular topic.
You won't even think of poo because you will be glad you don't have to get out of bed to go.  But listen to me on this..Day 5 or 6 post op, it will cross your mind, or the doctor will ask you when he calls you post op.  Then, your focus will become poo..or the lack thereof.  Everyone in the hour will talk about your poo. You will have poo peer pressure. Straining will cause increased head pressure, pain and spasms.  Magnesium Citrate is your friend.  Buy some preoperatively and put it in the fridge (you can find it at Walgreens or CVS, lemon-lime or grape are the best flavors...guess how I know). Go ahead, get some Miralax and a stool softener (ask your pharmacist what works best).  You will thank me later, I promise.
6.  Don't wash your hair with baby shampoo.  I did this at the recommendation of a well-meaning person in a FB group.  The docs don't really specify a shampoo..and this is harsh on your hair. Your hair will change texture a bit as it is, no need to help it turn into straw.  Dry shampoos work well for a clean feeling (which is short-lived), but once you start shampooing, use conditioning shampoo. My hair took over a year to get back to it's original texture with this first surgery (I used Burt's Bees Baby Shampoo the first go 'round).  This time I used Giovanni Organic Shampoo and Conditioner..and Kerastase Nectar Moisturizing cream..much better).
5.  Don't look at your incision immediately upon bandage removal.  If you've seen Frankenstein (or my post-op photos)- you can bet you will look just as horrible.  You will break down and cry like a baby even though all this time you've been looking at the photos of others and knowing how it will look.  A day or two later is better to look, after exposure to the air, the inflammation is decreased and it doesn't look as frightening.
4.  Don't  go without lip balm on your lips for any length of time the first 2-3 weeks. Your lips will crack, peel and bleed.  Drink, Drink, Drink water. Your body needs to stay hydrated to keep your lips, skin healthy during this physically traumatic time.
3.  Don't under hydrate prior to and after surgery. Drink, Drink, Drink water prior to surgery (NOT DAY OF), you will be told to not eat or drink after midnight the night before..follow that rule, however, prior to that time, hydrate as much as possible.  You will wake up with multiple IV's, probably and arterial line and possibly a central line.  I woke up with a 14 gauge (that's a very large gauge) IV in my foot the first time because I was dehydrated.  I am usually an easy stick, but I guess being anxious I didn't think to drink.  So-you remember: THINK TO DRINK!
2.  Don't tease the poor nurse who is starting your IV before surgery or re-sticking you after surgery.  Being a nurse myself, I teased my nurse (1st surgery). I told her I am an easy stick and if she couldn't get an IV started on me, she needed a new profession.  I was laughing, of course.... until she couldn't get an IV started and had to stick me multiple times and ask for assistance.  I woke up looking like I had wrestled with a porcupine.  I had the 14 gauge in my foot, an IV in each hand, one in my forearm and an art. line. The ICU nurse told me they had lots of trouble getting patent IV's on me.  So with surgery #2, I gulped water down the entire week before and I DIDN'T TEASE THE NURSE.  I'm not sure which worked for me..but I had only two regular IV's.. a 20 gauge and and 18 gauge and an arterial line when I woke up. They were able to discontinue my central line in the OR.
1.   Don't talk your mom..or anyone  else into coloring your hair right after surgery.  Around day 7 or post-op (second surgery), my hair color looked horrible to me.  I couldn't just be happy being alive. I wanted to look alive. Big dark circles were under my eyes, bruises on my temples, swollen, painful spots from the head fixator stuck out of my hairline, my hands, arms and neck were bruised from the IV's and central line, my lips were cracked and my nails were paper thin from me removing the Shellac from them a few days before surgery. For some reason, I just got fixated on my hair.  l sent my mom to Walgreens for necessities, magnesium citrate, pre-packaged enemas (just in case) and Garnier Nutrisse Haircolor: Darkest Brown.  What do you think we did first?  Drink the mag citrate?..No Way! Once glance at the clock told us Bob wouldn't be home from work for another 45 minutes. So, we used an occlusive dressing, covered my incision and Mom colored my hair.  I sat still for 25 minutes, holding my head up on my own while the color set in. It never occurred to me that it would hurt like the dickens to rinse out. See, the nerve endings around the hair follicles are so super sore, even today, 17 days post op, my head feels raw. I still only gingerly brush it. So, when my mom started rinsing out the color...two things happened. 1: I had spasms when I bent my head over to rinse it, so I was in massive internal pain and 2: I couldn't bear her rubbing my scalp because it was so sore, so she didn't. Fast forward to few days later, I keep noticing my fingernails are dirty.  I'm constantly washing my hands and complaining until I realized, "Hey, Einstein, you keep scratching your head, which is covered in hair color still...that's not's Garnier Nutrisse Darkest Brown!"   Yes, I admit it..I did that, all on my own! So please, color your hair a week or so prior to surgery and save yourself some pain and embarrassment!

SO that's my list..use it for what you will.   Other, more informative lists can be found on various FB Chiari group pages and on (the Ben's Friend's site).


  1. these were 1- great suggestions and thank so much for sharing them!!!

  2. All so true. NEVER knew how tired you can be just from taking a shower. IM 3 weeks since surgery. Get rest. IT'S the only thing that makes you feel better. ANd , yes, drink a lot of fluids.

  3. So I know this is an old post but do you recommend a neck pillow??? People keep telling me to get one. Surgery is Wednesday

  4. Laughed at alot but also will take this super seriously thank you. Hope your healing has gone well.

  5. Thanks, this is good for any planned trip to hospital, even overnight...stress/teams plays havic on our systems. I start a week before, FYI, it's been 6months since 20 gauge needle inserted for some test/left in for a few days,"in case they had to redo scan/dye. The best:after 1 week in hospital the original IV put in by Ambulance tech, I had to yell to have it flushed it,felt on fire....