Brain surgery? That's hilarious!

Got my EKG and chest xrays done today - nice to check those off the list.

Apparently the fact that i'm getting brain surgery is funny.  Or at least the guy who did my EKG thought so.  The event went as follows:

guy pointing to a gown: "Do you know what this is?"
me thinking: it's a prom dress.  what am I, an idiot?
me: "yeah..."
guy: "Put it on, opening in the front."
me thinking:  Geez bossy.  Good thing I know what it is or I'd be totally lost.

guy: "When was your last EKG?"
me: "I don't know, like 5 years ago."
guy laughs: "Yeah, that was a long time ago."
me: "I don't get them regularly."
guy: "Why are you having one today?"
me: "Part of a routine pre-op physical, I'm having brain surgery."
guy: laughter
me thinking: WTF??  is this happening?  How is that at all funny?
guy: "Why?"
me: "my brain is too big."
more laughter by guy
me thinking: if you laugh one more time at this, I will give you a solid punch to the throat
guy: "Do you use?"  as in, use drugs
me thinking: Again, WTF??  Who asks that?
me: "no.  it's a genetic condition."
guy: chuckle, "What do they do?"
me thinking: are you really asking me this?  you must for SURE want a punch to the throat
me: "Take out a piece of my skull."
guy: "So it can grow?"
me thinking:  Yeah, you ass clown.  After using a number of illicit drugs, I spend hours doing sodoku and it enlarged my brain so much it's too big.  Once they take out a piece, then i can do sodoku AND crossword puzzles!
me: "um...  No...  to make room...."
awkward silence.


I kid you not.  It was so bizarre and inappropriate.  I am so glad an EKG literally takes about 2 minutes.

A frustrating snag

Long story short, I had my pre-op physical done last friday, which was the 25th of June.  My surgery is the 26th of July, meaning the physical was 31 days instead of 30 days prior to my surgery.  Trying to find the right person to ask if that is going to be a problem is a problem.  It's so frustrating being a patient.  I don't know who to talk to about what, I have to tell my story over and over again just to get transferred to someone else.  I just want my damn question answered, it's that simple!

Wisdom from a real nurse Part III

The last installment of my series.  My friend Heidi imparts her nurse-ly wisdom!

TO THE FLOOR: After 1-2 days you'll go "to the floor". That means out of the ICU to the regular hospital floor. The difference will be that you will not be connected to monitors, your nurse will have more patients, and you will be more heavily focused on physical therapy, occupational therapy, mobility, and independence. This is quite difficult but you CAN do it. Try to keep in mind that what you will be going through is TEMPORARY. Remind yourself that it will be better someday and that "this, too, shall pass". Remember the people who are rooting for you and let that strength help you.

A couple other items that don't fit into one location:
TO BRING: Less is more. Seriously. Try not to bring anything valuable to the hospital. Things DO indeed get lost (soemhow. I really can't figure out how, but I blame the drunken grandpa). so, seriously consider what you could possibly leave at home and still be okay. Have your favorite items be things to look forward to coming home to. I'd suggest chapstick, a picture of the pups, maybe an iPod. Jeff can hang onto these things for you. Magazines are good to have. You will NOT feel like reading a book. No way, no how. The less stuff, the better. Not only will you have NO desire to use it, you have to cart it around from room to room and that sucks. If you take any meds at home, leave them at the hotel. You won't need to bring them to the hospital unless they're REALLY, and I'm talking REALLY, obscure or illegal. 

DOCTORS: these are strange creatures. They come in a variety of shapes, sizes, and flavors. They can be ellusive. You may or may not see your MD prior to surgery. He/She will come around 1-2 times a day, briefly, to check in. Have questions ready for the visit (if you have any). The doctors don't spend much time with you. There may be a resident who takes care of you for the majority of the time, instead of the main MD. The resident will do stuff like help with pain meds, changes in symptoms, etc. This is okay and the resident will be in contact with the rest of the medical team. 

NURSES: These are also strange creatures. ICU nurses are sarcastic, have a dark sense of humor, and are very kind people despite what it may seem sometimes. Some of us are quite Intense...cuz of the "I"CU, but it's not out of dislike for you. It's simply a phenotype. I am absolutely certain that your nurses are going to ADORE you and wish that you could be their patient every day. Trust me, I know this for certain. If I had a patient like you, I'd lick the floor if it made you feel better. (and then I'd drink bleach, but you get the idea). They will be able to tell you almost anything you need to know about how you're doing. They will likely nOT be able to answer a lot of questions about yoru surgery...like what happened intraop, how long exactly it took, what exactly the doctor's said about the case. We don't tend to get a bunch of details about that kind of thing. This is something to ask the doctors. Speaking of...

QUESTIONS TO ASK:
For the doctors: What are you plannign to give me for pain/nausea medication? (Sometimes the neurosurgeons are a bit skimpy with meds because the meds can interfere with a good neuro exam. So know what you're likely to experience beforehand.) when can I expect to see you? (so you can plan for questions later). How did my surgery go? Did anything unusual happen? What do you expect for my recovery?

For the nurses: Anything you want. What to expect for the day (if it's something you're concerned about). You should ask what they're doing if you want to know. What meds you're getting. How they think your vitals are. Your nurses will generally be very open with you and you will probably not even need to ask, but you have the right to know. 




Thank you to Heidi for your humor and information - it has really helped, and made me laugh!

Wisdom from a real nurse Part II

Continuing the email written to me by my friend Heidi, a nurse.

TO THE OR: So the drunken grandpa will accompany you to the o.r. It's cold in there, lots of lights, possibly some music (unfortunately this is not for you, it's for the surgeon and he/she will have specifically outlined the playlist before surgery. it's funniest cuz I'm totally serious). The drunken grandpa will make some comment about feeling sleepy. He may or may not put an oxygen mask on you. You'll probably see him injecting something that looks like milk. That's called propofol and it's very fast-acting. After that, you won't remember a dang 'ol thing. Then you'll go either to the recovery room or straight to the ICU.

RECOVERY ROOM: Again, looks a lot like pre-op but with hospital beds instead of chairs. YOu'll have a nurse who probably has 1 or two other patients. They will be taking your vitals abotu every 15 minutes, asking you questions that may seem silly, and also asking about pain and nausea. They will orient you to the time and date and tell you briefly how the surgery went. You will feel very tired, sore, and a little out of it. You will have a catheter in your bladder (called a "Foley" which you may or may not feel but it shouldn't be painful. You will have had a breathing tube in for surgery and your throat might be a little sore and dry. This really sucks and will just take time to get better. After a few hours, they will take you to the ICU. 


ICU STAY: Ahh...yes, this is my home. This is where I can REALLY help. the ICU is quite the place...full of beeping and buzzing and alarms and people and lights. It's annoying and loud and busy. But you will be monitored in more ways than you can possibly imagine so if nothing else, you can feel safe knowing that your condition is being so closely monitored. The RNs will be waking you up every hour to do an neuro exam on your. This will involve moving various body parts on command, looking at your pupils, asking about pain and sensation in your extremities. This will go on for about 18-24 hours (= exhausting for you!!). Your vitals will be monitored every hour and you will be constantly connected to a BP cuff, O2 finger sensor and EKG lines. Your monitor might beep or buzz. do not worry about this. You are in the ICU for a reason and if something is wrong, you will have the entire staff rushing into your room. Sleep when you can, be honest about how you're feeling, and try not to put any pressure on yourself about anything. Don't take phone calls if you don't feel like it. Ask Jeff to go to the waiting room for awhile so you can take a nap and not worry about "entertaining" someone. And remember that this is time to recover. This is about YOU and no one else but you. This is a time to create a whole new meaning of "focus". (I think that might be a song). You will have plenty of time to be awake and social. This is not that time. And if people don't like it, they can suck my wang. 


Final installment of my Wisdom from a real nurse series tomorrow....  And yes, Heidi did say "they can suck my wang."

Wisdom from a real nurse

My friend Heidi is a nurse, and I emailed her to ask her... Well, basically ask her what the hell I'm in for.  She wrote me a response that I have to share - it was enlightening and also made me laugh out loud several times.

I've been a hospital patient several times but it was easiest when I knew exactly what was going on and what to expect, i.e., after I was a nurse. Otherwise, it seems kinda foreign and uncertain. Which is why I'm so glad that I get to offer some info and help to you. I'm assuming you'll spend at least part of you time in the ICU so I'll give you the skinny on what that experience might be like too.

ADMIT: You'll go to the hospital at the ass-crack of dawn probably through the admitting department, which usually looks like a doctor's office waiting room. A slightly overweight lady will ask for your insurance card, contact numbers (Jeff's cell, e.g.), address, etc and have you fill out some paperwork like a financial agreement saying that you know that the hospital will bill you and stuff like that. She will not make eye contact with you, nor will she smile. She may or may not be having a simultaneous conversation with her co-worker about her friend that won big at bingo and how she wishes it were her because she hates her job. I think it's a hiring requirement. Do not take it personally. Then you'll wait until they take you to pre-op. Wait and wait.


PRE-OP: This is usually a big room with a bunch of big chairs separated by curtains. At that point, they will confirm your identity, give you an i.d. band (if they didn't in admit), confirm allergies, confirm procedure site, stuff like that. They will take your vitals and have you change into a hospital gown. The gown is ugly and your ass will hang out (trust me, this does NOT bother some people. These people are the very ones that it should, in fact, bother). There are multiple ties with seemingly no purpose. I still haven't figured out if they all have an actual place to tie to. I'm pretty sure it's actually a stealth neuro exam. You'll probably feel a little chilly because of said gown. They may start a couple IVs at this point. This feels a little like a blood draw. It's not the most comfortable thing in the world but it's temporary. If you are worried about it, try to distract yourself by listening to the conversations of the patients next to you. Trust me, you will not be disappointed. Then, some more waiting. And waiting. There migth be some bustling or some more paperwork or questions. This is normal. And then more waiting. Then usually the anesthesiologist comes in to talk to you. This is generally an older gentleman with a questionable sense of humor. It's unclear if he's perpetually drunk. But don't worry: he's very competent.


Continued in my next post...

All the pieces of the puzzle

Now that Dr. Kraft is helping me get my pre-op physical done (required by Columbia St. Marys before I can have surgery), I have all these little pieces to put together.  I have an EKG scheduled for next week, as well as chest x-rays.  There's bloodwork to be done, as well as the actual physical.

In addition to all the medical pieces, I'm still tying to solidify my travel plans.  It's a bit complicated since I had already planned my yearly trip to Michigan, we had to do a lot of juggling around to get it right.  Jeff was on the phone for a long time trying to make sure he and I were on the same return flight from Milwaukee to Seattle...  Since I won't be allowed to lift anything, he gets to carry all my bags.  Hopefully I'll have enough pain-killers to just sleep through the flight.

As all these little things come into place, I'm trying not to think about the fact I'm going to have surgery.  I'm trying to do the logistics and forget that I'm getting my head cut open.

Slow it down

Dr. Kraft says I need to slow down.  He said that during my recovery I'll have to take it very easy, and that is hard for me.  I'm kind of a go-go type of person.  Not to the extreme, but leisure time is hard for me.  I'm always thinking of what I could or should be doing.  He suggested I really start to train my brain to accept and embrace leisure time, because my body will be working overtime to heal and while it's doing that I need to rest.

but there's so many things to do before the surgery.  The studio where I work is moving locations so we're packing everything up in one location and taking it across town, not to mention all the renovating we're doing on the new place.  So aside from getting that in place, there's dogs to care for, a cat to give IV fluids to,  Real Housewives of New Jersey to keep up with, among all the usual home things.

So maybe I'll wait to slow down.

from my little brother

got a package in the mail from my little brother today.  among other things, it contained this amazing shirt.

family is a good thing.

losing sleep

my nights are filled more and more with worries and thoughts about the surgery.  most nights I dream about it, sometimes when I wake up I'm not sure what really happened in my dream and in real life.  when people ask, "how are you feeling?  Are you nervous?  Are you scared?"  I feel like saying what I'm thinking at that point.

How would you feel if you were having brain surgery?  Would you be nervous?  Would you be scared?  That's what I thought.

Celebrating my dad

(I forgot to post this on Father's Day!)

My parents came with my husband and me when we went to Milwaukee to see Dr. Heffez.  Even though I'm 28 years old, I'll always need my mom and dad.  That said, today is the day to celebrate dad.

Let me tell you a few lessons my dad taught me that I do my best to keep in mind:

• measure twice, cut once
• pay yourself first
• if you're going to do something, do it right and do it well
• ice cream is the perfect ending to any kind of day
• telling stories is different than lying
• use a map, not mapquest

So hooray to you, dad!  I love you!

What are some lessons you've learned from your dad?

A reminder.

I have several tattoos, small ones.  If you add them up, they might equal one regular sized tattoo.  My brother in law tattooed this for me

It's on the top of my right shoulder.  I absolutely love it.  It means a lot of different things to me, the obvious being in reference to being a photographer.  But it's more than that.






For quite a while I've been wanting a friend for the focus tattoo and a word has stood out in my mind for a long time.  Strength.  Everyone knows what it's like to need to be reminded to be strong.  As my pain has gotten worse, I need more and more of a reminder.  Not only does it serve as a reminder, it's also a statement.  A declaration.

Welcome to my body, new tattoo!  Just freshly done (obviously since it's still pink and puffy), and I already love it.  

I love when people say, "You know that you're going to have that forever..."  Yes.  Yes, I do.  And I will forever need a reminder to be strong, and a celebration of how strong I have been.

Everything but the kitchen sink

My husband knows it takes me like a week to pack for any kind of trip.  I put my suitcase out, add a few things here, a few things there, make piles, it's a big ordeal.  I wouldn't say that I overpack, but I definitely over think my packing.  I run through every scenario - "What if it rains?  What if there's a tornado? What if I have some fast growing tumor that i need to cover up somehow?"  You know.  The usual.

So what am I supposed to pack for my vacation to my home state PLUS a week in the hospital?  So far I have a few suggestions, such as:

• chapstick
• your own pillow
• slippers
• Ice bag (i've been told the hospital has like ice packs that are hard, and an ice bag is more comfy)
• my own PJs
• my own shampoo/toiletries (seems like that will help me feel more comfortable, a little more like myself)

Any ideas?  Anyone spent time in the hospital and have any suggestions as to what I should take?

The best 20 bucks I ever spent

I'm a list kind of person, and I've been making all kinds of lists for what to bring to the hospital.  I have this pair of sweatpants that I start having a small anxiety attack if they are in the wash or I can't find them.  I love this pants.  I mean, love them.  My house is on fire, I'd run in for the animals and my sweatpants.  There really isn't anything special about them, they're grey, long enough for my legs which is rare, they have a faded logo on them...  Yeah, nothing special.  And I had no idea how much I'd love them when I bought them.  But sometimes things are like that.

What's the best $20 you ever spent?

Dr. Kraft saves the day!

If you've been following my blog, you know that I've been going in circles about this pre-op physical.  Well, Dr. Kraft saves the day.  I started seeing Dr. Kraft, a naturopath physician, when I had seen everyone else and no one could help.  He has always been helpful and kind, but I hadn't seen him in quite a while because I've been so caught up in traveling and specialists.

All I needed to do was tell him the situation and what I needed, and two wonderful words came from his mouth. "No problem."  He's going to call the WI Chiari Center and figure out exactly what they need, and get it done.

It's a small thing, but such a huge weight off my shoulders.  I finally felt like a doctor was working with me and for me, and not against me.

I found this website, this is not where I'm having my surgery done, but it's been a real help for me to read and get somewhat of an idea of what I'll be going through.

I find this hysterical.

I found this shirt. And I find it hysterical.

Click here----->  If you think my...

the shirt off your back.

Those of you who know me, know that I am a crafter.  I've started a new fun venture using old t-shirts and crocheting them into scarves.

Tara is modeling my latest one

Snez is bundled up in my first try ever

I tell you all this because after my surgery, I know I'll be bored and needing to occupy myself!  If you have any old t shirts (any color, any wear, the tissue tee ones are the best) that you're wanting to get rid of, PLEASE send them my way!  I plan on cutting them with my mom pre-surgery, then having a bunch to work with for post-surgery.  You can mail them to me, email me if you don't have my address.

Again, doesn't matter the color, if they're graphics or whatnot.  Just make sure they are all cotton t shirts with no bedazzling or studs.  I know you guys, you wear a lot of bedazzled clothing.

Round and round we go

Still this pre-op physical is holding everything up.  Bright and early this morning, another call from my PCP's office - "No, we can't do the pre-op physical.  you have to get it done where you're going to have the surgery."  She said that like a.) that would be easy to do and b.) I should know WHY that is.

Finally my Dr. got on the phone, and she said they no longer do consults, and something to the effect that the cost of one is included in the surgery cost.  She she won't do it.  And that leaves me where, exactly?  She will call the WI Chiari Center and tell them that, and then get back to me.

Why is this such an issue?  Why am I being treated when I talk to different providers that it's -my- fault they don't cover these physicals?  And why did I get the strange feeling that my Dr. doesn't believe the surgery will work...?

To all of you in healthcare...

Here is a note to all of you in some kind of healthcare:

You may see a dozen patients in a day.  You may see more.  But each patient only sees you.  You may go through the motions monotonously but each patient has taken time from their day to seek your help for something.  Something big or something small, but something.  Keep that in mind when you hear the same question for the third time that day, or have to do the same exam over and over.  YOU are the only experience that patient will have with that scenario, so please, be kind.

Some basic Chari info...

A number of people have been asking a bit about Chiari (kee ARE ee), so here's some basic info.

• Chiari Malformation (or a subtype) affects less than 200,000 people in the US population (found here)
• Malformations may occur in the lower portion of the brain or in the brain stem
• Chari Malformation is diagnosed by an MRI, the most common symptom is headaches
• Chiari malformation (CM) includes a complex group of disorders characterized by herniation of the cerebellum through the large opening in the base of the skull (foramen magnum) into the spinal canal. The herniated tissue blocks the circulation of cerebrospinal fluid in the brain and can lead to the formation of a cavity (syrinx) within the spinal cord. There are three main types of CM. CM1, the simplest and most prevalent form, is generally considered to be a congenital malformation, although acquired cases are recognized. (See diagrams below.) It is rarely apparent at birth. CM2 and CM3 are more severe congenital malformations that are apparent at birth and associated with complex defects of the brain and spinal cord.  (Found here, at times looks like the image below)
•   

want more info?  try these sites:

Conquer Chari

WI Chiari Center (this is where I will have my surgery)

Chiari One

The Chiari Foundation on Facebook  (I check in here every once in a while - a great meeting place for real people with Chari or loved ones with Chiari)

Please note, these are resources available on the internet, and if you think you have Chari don't just trust the websites!  Make sure you find a specialist in your area.  Obviously.  

A bright spot in my Milwaukee trip

I went to Milwaukee to see Dr. Heffez, the Chiari specialist.  Milwaukee is a gem of a city, and we were able to enjoy a bit of sunshine.

The Milwaukee Alehouse, a lovely meal on the river.

Other places to stop by:

• The Historic Third Ward (Hello shopping!)
• The Water Buffalo (a brewery-ish spot on, ironically, the corner of Water and Buffalo)
• The Public Market (Although i have to say, those of us from the Seattle area are spoiled by Pike's Place)
• the Milwaukee Art Museum (This place is amazing!  At least go see the building open and close like wings in the noon hour.  Pretty awesome)

Seriously?

Apparently my primary care physician is to do a pre-op physical for me within 30 days of my surgery.  I think it's like chest x-rays and blood work, make sure I don't have a condition that will make me explode on the operating table or anything.

I get a rather rude call from my PCP's office, saying they can't do the pre-op physical for me because I've never been seen for that 'condition' at her office before.  Hmm...  That's because my PCP referred me to a neurologist like any good PCP would.  I've seen her several times years ago for symptoms relating to Chiari, but I didn't know that at the time.  What a bizarre circle - the PCP won't see me for Chiari because it's out of her specialty, but I need her to do the pre-op physical...  But she won't do the pre-op physical because she hasn't seen me for Chiari...  But won't see me for Chiari....  You get the idea.  What a cycle.

I'm in the process of contacting my neurologist to see if he can do a pre-op physical and I can just let go of the whole PCP mess.  If not, who knows.  

Although I think health insurance is one of the best things in my life right now, I find the health care system frustrating at times.  The nurse that called me was not helpful and very rude, and made me wonder if she thought at all what a vulnerable state I am in, and how that made me feel.  

an illustration...

This was the best MRI still I could find to illustrate my squished brainstem.  There is a blood vessel on the other side of the blood vessel showing that is also squishing the brainstem on the other side.  The top of the image is toward my face, it's a horizontal cross-section.

hoping for the beginning of the end.

So I've gone back and forth about whether or not I want to chronicle this journey. I've decided that I would create this blog to keep everyone updated, and I also feel like it's important for me to share this.  


Maybe at some point it can help someone else. Long story short: I've been in pain for 5 years, diagnosed with Chiari Malformation. (Basically a part of your brain hangs a bit lower than it should.) First it was 'insignificant,' so i went to see every specialist you can possibly think of trying to figure out what is causing all this pain. You name it, I tried it. Well, no witch doctor, but everything else. (Any of you who know me know about this pain monster that looms over me like a horrible black cloud)  


To learn more about Chiari Malformation, visit http://chiaricenter.org/ or http://www.wichiaricenter.org/.  


We went to Milwaukee as a last ditch effort to find some answers and find relief. Lo and behold, Dr. Heffez (the leading Chiari doctor in the country) shows me an image I have never seen before. I'll attach an image at some point. As you can imagine, a squished brainstem is not ideal. Lots of stuff goes on there. and squeezing it causes all kinds of issues.  


So what happens now? There is no treatment for Chiari, there is pain management or surgery. Late-July, I will have surgery. Dr. Heffez will go in there and make room for my brainstem so there's no more squishing, and hopefully no more pain. The surgery is called a decompression surgery. Dr. Heffez does over 100 surgeries of this kind a year, while other 'specialists' may do 2 or 3. 


Let me share a few things:  
- I'm not sharing this information for pity or sympathy. In fact, I don't really want to talk about it. I don't want to tell the story over and over again. It gets old. I don't want to answer the question "are you scared?" Because yes. I am.  
- I don't have to have my head shaved. Only a little patch in the back about the size of your thumb.  


That said, I do want to document my journey, because this could mean a new beginning to my life. Any of you that have chronic pain knows how debilitating it can be, and how it completely alters you as a person. It colors every decision, every aspect, everything. It colors what you say and your mood, what you can and can't do. I am cautiously optimistic this is the answer to so many prayers. Also, I do want to keep people updated on how I'm doing. I am so blessed to have so many people concerned about me and hoping for the same outcome as I am.