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 is..be 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 dirt..it'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 Chiarisupport.org (the Ben's Friend's site).

Happy Birthday to ME! Happy Birthday to ME! Happy Birthday Dear ME-EE! Happy Birthday to MEEEE!

As you may notice by the way I beautifully sang the title of this blog...I'm feeling better.

No, today is NOT my birthday. 

By now, everyone knows I had my second brain surgery only sixteen short days ago on my birthday (April 16-just in case you want to make a note to send me something FABULOUS next year- I'll pause briefly for you to make that note on your calendar.)

I literally waited about forty-five seconds for you to make the notation. 

I'm singing because yesterday was a good day. 

Yes, I spent eight long hours in our bumpity-bump truck with my head totally uncomfortable the entire time..but two...no, make it three very important things happened yesterday. 

Again..in order of importance: 

1.  Bob, Lindsey and I got to have lunch with Katrina and Misty!  

2.  I got a BIRTHDAY CAKE!

3.  My neuro report card was pretty much an A+ and I'm stitch-free!

Did I mention I got a BIRTHDAY CAKE?

Bob and I with my surprise cake..as you may notice- I am only 8 years old! Thank goodness they didn't put 40+ candles on this cake!

Katrina and I in the front, Misty in the back/middle..My two precious friends.

Bob, Lindsey and I. I'm not quite sure what or who they are looking at..but you get the idea..it was a fun lunch!

The real reason I got  a cake is because almost every day I have said, "Wow, I really do want a piece of birthday cake!"  So Lindsey and Bob  covertly got with Katrina and Misty--and VOILA!  CAKE!
(They all knew I'd never shut up about it otherwise!)

SO! After lunch outside of Houston, we trucked on in to the Medical Center and I saw Dr. Kim.
He was very pleased with my progress so far.  We are all very pleased.
Yes, I've still got a little bit of pain..as a matter of fact, I feel like my head is raw on one side.
It's pretty uncomfortable, but I have dealt with much worse, so no worries.
My discussion with Dr. Kim resulted in the following:
He says I'm complicated... that's not a revelation..but I was surprised to know he thinks I'm a complicated case.  You see, both Chiari Malformation and Arachnoid Cysts can be congenital-both can be connected to Ehlers-Danlos Syndrome...so it's kind of like a what-came-first-the-chicken-or-the-egg thing  (as a side bar-I believe God created the chicken first..but not sure what HE did with the Chiari-Cyst thing).
If I had syringomyelia like many Chiarians, then that would be more complex, but not complicated.
Complicated could easily be my middle name.
Anyway-
He said if I go a year and a half with no recurrence of symptoms, this was likely a permanent fix.
He said if I go three-four years, we can be sure of it.
He further stated, if symptoms recur, I will have to have a cysto-peritoneal shunt, as opposed to the internal shunts I have now.  The little ones I have now are contained basically in my brain, the C-P  would go from my brain, down through my body into my peritoneum--basically the abdominal cavity.
He is very hopeful this is a fix.
I'm setting my sights on November 2015.  If I can get there with minimal issues, I'll feel like this was successful.

Already, I feel more clear headed, my speech comes more freely, vision has improved and I have improved feeling in my left hand, leg and left side of my face. My hearing is still less than optimal, however, he said that can take awhile to improve, so I'm practicing patience.

While typing this I've experienced two of those horribly painful things I call "brain spasms".  Literally, I feel as though my brain squeezes into a tight ball and it  hurts  so  badly.  I know my pain meds don't help it..but I'm going to take some anyway, get  away from the brightness of this laptop and rest awhile.

I will report more over the next few days..Stay tuned..I'm developing a TOP 10 THINGS TO NOT DO AFTER BRAIN SURGERY list..and how found out they were things to NOT DO!  I will post it soon.

Thank you again for your prayers, support and notes of encouragement! 

"Two Weeks Post-op And All's Well!"

I always thought the job of Town Cryer would be an awesome job. 

I mean, it's almost like being paid to gossip. 

Having all of the inside info on the state of things..whether things are "all well" or "a real x@#$%&! mess".. Well, anyway, I thought it would be a cool job to have. 

I suppose I've become my own personal "CRYER". 

Don't get too fidgety, I'm not doing any real crying-at least not this afternoon.

This morning-well, that was a different story, but not one we are diving into for now. 

Nonetheless, I am my own personal cryer..it's up to me to declare the state of things...my things.

So here goes...

I'm two weeks post-op today (and all's well!). 

Tomorrow, Bob, Lindsey and I will head down to Houston for (listed in order of importance):

1. Lunch with Katrina and Misty.

2. Post op appt with Dr. Kim to get my stitches out hear what he has to say about surgery.

So far, I've had only brief periods of time alone since surgery..an hour or so here and there. 

Thanks to my Daughter, Husband, Mom and Daughter-In-Love...I've been pretty well-handled. 

I'm not at all looking forward to starting my real days at home alone, which start on Friday. 

However, I'm pleased to report that I think I'm ready. 

I feel so much better today than I did two weeks after my first surgery. 

My pain has calmed way down. My eyes are better for longer periods.

My neck mobility is almost what it was before this surgery. 

Besides being tired, nauseated more than usual and having no change in hearing loss- I am very pleased. 

I know I owe a great debt to the many of you that have prayed for me. 

I am truly in your debt and am so thankful for you. 

Prayer is something I don't take lightly.

My mom asked me while she was here if I ever wonder if all of the people that say, "I'm praying for you" truly are..I said, "No, I don't"  I just make sure when I say those words, "Praying for you" that I stop right that minute and do just that. (Empty words never helped anyone) 

Guess what I found out, my mom does the same thing.  I've known her my whole life and never knew we had this in common.

I know there are times when my writing is sad, dark, selfish-even down right pathetic. 

I would apologize, but I don't want to. 

I'm real. I'm a realist. 

On any given day I can go from dark and twisty to bright and shiny within seconds. 

 I don't trust people that are happy all the time-It's just not natural. 

Therefore, I  decided to remove the mask I sometimes default into wearing and just say it like it is. 

Love me-hate me, Leave me or keep me..

Whatever you decide, at least its a decision based on truth. 

Because YOU my friend know me inside and out. 

What you read is what you get. 

No more, no less. 

SO.. back to being my own personal Cryer.  

I'm pleased with my progress. I expect to return to Dallas tomorrow evening with no stitches in my head, a good surgical report to my credit and a warm place in my heart from spending the day with my husband, daughter-in-love and seeing my two sweet friends. 

The trip will be long (8 hrs of driving round trip), bumpy (we are taking my husband's bumpy truck because we can't all three squeeze into the two seats of our other car) and most likely painful (due to a combo of bumps and sunshine), so if you can spare a little more prayer-

We could use a little bit more for safe, painless, nausea-free travel and a good check-up. 

Thanks so much- I will try to post an update on Friday.

No One Quits

How did I get to ten days post op?

The entire surgical process is fading into my memory. 

Mercifully, God has hidden some of the events of the past several days from me. 

Mercifully, He has also allowed several to remain. 

Consistently across the span of the last few weeks, I've sunken into the depths of despair every day. 

Not really a "Why Me?" pity party...

More of a "this is to big for me to carry", hopeless, helpless feeling. 

The feeling of wanting to share this burden of sorrow, yet wanting to also hide it from the world. 

Like I told Bob yesterday, "I just want to lay here and cry for no specific reason"

Not because of the pain, or even the knowledge that this will likely be a lifelong battle, that very few people can state they are "cured" (and of those who do--it rarely lasts very long). 

Crying releases something..like a dam bursting  under too much pressure. 

Crying somehow validates that I can't carry this  burden alone. 

Crying gives me the permission to not be "brave" or "strong" or to wear that ridiculous mask of happiness that I feel is expected from me. 

Crying is a gift.

Last time I had surgery, in January 2013..I blogged more frequently and earlier after surgery. 

I wrote every thought, every ache, pain, wound, realization and "Ah ha!" moment.

Either here or on my CaringBridge site...many people followed as I chronicled the event. I had so much to share, so much to learn, so much to give. 

This time has been so very different. 

Yes, my eyes have had difficulty with electronics so that kept the writing at bay. 

At the same time, I knew I had nothing to really share.

I needed to soak it all in and regurgitate it in a way that really spoke from my heart. 

Not just a timeline of events and milestones. 

I wanted to share my heart in an unmistakable way, in a way that moves people to action. 

As words evolve from my keystrokes, I wonder if I can do justice to all I feel. 

My blogging seems redundant and pointless. 

I'm living in Blah-ville.  

Tears are rolling down my cheeks from some indescribable grief. 

I ache.

I'm tired of this. 

I'm tired of seeing the purple flame on Facebook (signifies the death of a person with Chiari), 

I tell some friends/family members..another one of us passed away. 

They look at me with pity and say nothing. 

My phone rings--I look at it. I recognize the name.  They are going to ask how I feel. 

I let it go to voice mail.  Talking is difficult and talking without crying is impossible.

More tears roll down my face. 

My head is throbbing now. Too much crying. 

Time passes too slowly. 

I have foreign objects in my brain now. Permanent foreign objects. 

I'm the brain surgery girl. 

Overheard on the elevator the other day:  "Why do you think she has that bandage on her head? Poor thing! How sad!" 

Who would've ever thought it?  

I listen to the voice mail from the caller I avoided. 

They say they hope I'm feeling better, that they are praying for me and sorry for not calling sooner-but they've had their own issues to deal with. 

Really? Who says that? 

I've had my own issues too--like having my skull cracked open.

Bitterness slips out of my mouth-as soon as I say it, I admonish myself for being so self-centered. 

This is MY world--not theirs.  Everyone has their issues. 

Funny how mine are more important to me and I'm okay with that..but I resent it when others behave in the same fashion- placing priority on their issues. 

How can they act normal when I'm suffering over here?  Can't they see, hear and feel my suffering?

Now, not only do I have foreign objects in my head, but I'm selfish too. 

I slip down a few rungs on the ladder of despair and cry more. 

This is getting out of hand...and my head hurts like hell. 

I silently pray for forgiveness for my self-centeredness, for using profanity both silently and audibly, 

for not being more grateful and I ask for God's help with the bitterness, the sadness and the disappointment with myself and others.  

I turn off the light and try to nap. There is no comfortable way to rest my head.  it feels like one big, throbbing bruise.  So, I cry some more. 

Hot tears on my cheeks make my face feel tight..I hear my own voice in my head..

"No one quits--No one quits..Not today!"

I know my writing is usually a bit more informative, more fact related, more educational...and I'm sure I will get back to that. For now, this is my outlet. As my body physically heals, 

I also need emotional and spiritual healing. 

I feel my life has once again been spared.  I am seeking purpose in all of this. 

If you have been where I am, I hope it helps for you to know you are not alone. 

Some of our Chiari sisters have taken their own lives because of the pain, isolation, feeling they were a burden.  We all have these thoughts cross our minds.  We are all subject to despair, sadness and shame.   I hope you find refuge in my writing and I hope on your darkest days you are able to look in the mirror, wipe aways your tears, pull yourself together and say, "No one quits--No one quits..Not today!"

And Then It Came Back

"And then....it came back..."

I remember reading this words on someone else's Chiari blog, speaking of her post operative experience.
I thought, "How horrible, to go through that awful surgery, to have the elation of beginning to feel great, then the disappointment of symptoms slowly coming back--that would never happen to me-that must be REALLY RARE."
As I type this, I can hear the voice over from ABC's Wide World of Sports: "THE THRILL OF VICTORY....THE AGONY OF DEFEAT!!".   (I always wanted to research and find out how many broken bones that poor guy had in the commercial.)

I guess what I'm dealing with right now is the "agony of defeat".
The past few weeks have been particularly troublesome.
Headaches, Muscle Spasms, decreased hearing, blurred vision, trouble speaking, trouble swallowing, Dizziness...vertigo...weird numb sensations..numb face, fingers, back, pelvis.. I shouldn't type "pelvis"..that is very risque for a good Baptist girl...but, hey...it' s the truth. (and at least I'm not posting a picture.).  These are all intermittent, yet they can all be present at once, and can all be gone at once, usually it's just the same 4 or 5 things.

I know I shouldn't be.-but I'm a little angry about it.   I have been on this "positive in..positive out" mindset for  about 4 weeks...and I'm telling you..when I made that declaration-it's like I threw down the gauntlet and my brain said, "We will see just how positive you can be, Little Missy!"  (My brain uses the  Wizard of Oz voice when it says this, you know, the "I'll get you My Pretty!" voice) 

I try..I mean a really think I try to be encouraging. The whole reason I started this blog is to encourage others to fight this thing...to get down and dirty with it...to not let it win, rob our joy or run our lives.  Well, my friend--my fight is waning. I'm tired of it, I've had enough and I'm full. When the first few symptoms reared their ugly head this past July, I think I handled it pretty well...then again in October when a few more popped back up...I still looked for the positives. And now, while I do look for the positives...and feel blessed in many ways...I still have to get out what and how I'm feeling and I just feel...in a word...BAD.

I've become a liar. I make no apology for it. I'm a stinking liar.  When someone says, "How are you feeling?"  I say, "I'm fine"  or "I feel good".  Who really wants to hear, "I feel like crap, I can't feel the left side of my face and everything you are saying to me sounds like the voice of Charlie Brown's teacher (wah wah wah wa wa wah), the back of my head is pulsating with every heartbeat and my right hand has been  numb since 6 pm last night (time now..10:26 a.m.), about every other hour I think,"maybe I should go to the emergency room" , remind myself of all the Chiarians that have recently passed away (9 this year that we know of), then brush it off by saying to myself-"Quit whining-it could be soooo much worse".    I KNOW no one wants to hear THAT.  So, "I'm fine" basically covers it.

I feel like there is no one to tell (thank you, Katrina Powell for FB chatting with me enough to get me out of that funk for a few hours) that I can be real with.   Whether that is reality or my skewed perception--I have no clue. I just feel horrible. I'm sad. I'm disappointed and I literally do not know what to do next.

Current doctor standings..picking up MRI tomorrow to Fed Ex to Dr. Kim.  Concerned that this has recurred because my Ehlers-Danlos Syndrome issues were not addressed prior to first surgery which may have resulted in the re- accumulation of fluid in the arachnoid cyst area and my cerebellum settling right back down where it was)..so also sendiing fillms to EDS specialist in Bethesda, Maryland,..Honestly-I don't want to be my own advocate anymore. I want someone else to do it. (Thank you, Desiree Twait for all of the info you have provided me on EDS and CCI (cranio-cervical intability). 

Tonight, my husband looked at me and said, "Are you depressed?" I said, "no".. but am I ?  Desiree suggests that I haven't gone through the "grieving process" for my old life..maybe that's true-but since I've had issues my entire life..what did I really lose?  Some friends......yes. I grieve for that, friends are really important and I truly envy people with long term illnesses that have people that are there with them-in the trenches-fighting the fight-crying for the disappointments and cheering for every victory (Misty Daley..your bestie is truly blessed).  I feel sad that I don't want to go to movies  and am not up for running upstairs to the gym to work out.  I'm sad that I know working full-time as an RN is so challenging that I'm afraid of it. I'm embarrassed that I say the wrong thing A LOT and people always point it out and I feel stupid.   I'm disappointed that I have to explain this ridiculous condition to the same people over and over because I want them to do their own research...to come along side me and guide me to the next step, whatever that is.I'm mad at myself for being disappointed with them.
And I really feel bad that my husband has to deal with all of the above, every day. I'm sure if he were completely honest, he would admit the relief he would feel if he could simply send me back in for a refund.
So..yes..maybe I am depressed.  Maybe I shouldn't be sharing this in an open forum.
Maybe I should just continue the lie.

But then again...maybe you, or someone you love feels the same way..so maybe it needs to be said.
Maybe just having a voice makes a difference.  Maybe this is just an elaborate pity party on my part.
But do me a huge favor..Don't tell me to put on my "big girl panties" and deal with it (I've always despised that expression).  I might have to knock you smooth out--or in the words of Bon Qui Qui-- "I will cuuut you".

Just let me whine and lick my wounds. The fighter in me will return- I'm sure of it.
And when she does...she will track down that meek little voice whispering, "And then...it came back", wrestle it to the ground, slap a muzzle on it and lock it away for a good long while.
After all, I am from Mississippi.