A sleeping experiment

I had a thought the other night while tossing and turning to try to escape the horrible pain that gripped my legs and back.  I decided to do an experiment - I decided to try sleeping in our guest room to see if that has any effect on my pain level.  The guest bed is significantly firmer than our luxurious king.  Although everything I've read makes me think we made the right choice in our mattress softness (I'm a side sleeper, neither of us is very heavy), couldn't hurt to try to change a variable.  

So the past three nights I've been sleeping in the guest bed.  Jeff joined me once, to his dismay.  He hates that bed.  Otherwise he's been working nights so we aren't sleeping at the same time anyway.  I'm hesitant to disclose my experiment results because I'm afraid I'll jinx it.  So far, my leg pain has been the familiar dull aching that I experience all day, but has no intensified in the night.  Amazing.  Secondly, my back pain has lessened, then was the same, then lessened.  That may have to do with the amount of hours I'm laying down, no matter what bed.

Do I think changing mattresses will solve my leg pain?  No.  not in the least.  But, the spike in pain I experience through the night that keeps me awake may be able to be lessened or gone completely.  I don't have a plan at the moment, I'm going to sleep in there again tonight and then discuss with my partner what we should do.  I feel like a sleep number bed may be calling me...  Hmm... I wonder what my sleep number will be?

More aches and pains.

The last few nights my leg pain has been worse than it ever has been.  It wakes me up, even after I've taken a sleeping pills, and I toss and turn, hoping it will get better.  It doesn't.  I don't know what is causing this pain.  My gut tells me it's a combination of things, so I'm trying to figure out at least something so I can have a little relief.  The pain used to be mostly concentrated in my calves, now it's my feet, my ankles, legs, lower back...  I've seen a pediatrist to see if the problem is coming from my feet.  I overpronate, and have (expensive!) orthotics.  And I wear them almost all the time.  But no relief.

It seems like whatever I do, it hurts.  If I rest, if I walk, it hurts.

This day marks the halfway point with my neck brace.  I'm a bit more used to it than at first, although still dream of someone strangling me.  I'm definitely antsy to get it off.  As I mentioned, I still have the terrible leg/lower body pain, as well as pain between my shoulder blades and headaches.  The headaches (I think) are getting better.  Although they are still bad sometimes, it's more like a dull ache.  That's what it was like before surgery...  I just need to trust it takes time.

In other news, I went out on the town with my friends on Tuesday.  It was so much fun!  AND, it was semi-costumey so I could wear a boa and feel way less self conscience about the neck brace.

Me, Erin, and Christina at a sneak peek of Teatro Zinzanni's new show

Erin and me pre-show.

It was a fun night.  I paid dearly for it that night and the next day, my legs were screaming.  It's making me crazy that they hurt so bad and no one knows why.  It was merely a guess that the pain was caused by the malformation.  I'm very fearful it is not.

Recovery: Granola

Yesterday was another day of a bit of baking - granola this time.  I've never made granola, but my mom used to.  So I thought I'd try.

I made this cinnamon raisin granola, but didn't have coconut.  I used crushed pecans instead.  It turned out really well!  I gave some to a friend, and ate most of the rest this morning.  I'll definitely make that one again.  Made the house smell good, too.

Early to bed, early to rise

UGH.  How could I have ever thought that making a dentist appointment for 8am was a good idea?  I hate getting up early.  Hate it.  Ask my husband, he says I only get up before 8:30 if we have to fly somewhere. I don't think it's because I'm lazy, I think it's because of several things.  I sleep pretty poorly until the early morning, so I think getting up early interrupts my best sleep.  Also, a symptom of Chaiari Malformation is exhaustion and fatigue, so that doesn't help.

But alas, I got up at 7am to get to the dentist.  And I have to come clean.  I took my neck brace off for the appt.  I didn't think I would be able to lay in that chair with it (anytime there's pressure on the back it's an instant headache), and I just didn't want to deal with all the questions.  Even though my dentist knew I was having the surgery, and was very forgiving about the larger amount of plaque I had accrued.

It's noon and I've lost my steam.  I put the laundry room somewhat back together, but I can't find the right place that each cupboard door goes.  I thought they were all the same, but not true.  So I got frustrated, three doors are on, three are off.  I wanted to have it all back together by the time my husband got home, but looks like that isn't going to happen.

So far, the neck brace hasn't helped my symptoms at all.  I'm getting a little more used to the looks of sympathy, though.  Tomorrow my friend Erin and I head down to Seattle for a Yelp Elite event - it's sort of a costumey type party, so I'll be wearing a boa.  That will hide the brace well I think.  It's for a preview of Teatro Zinzanni's new show, super fun.

Still not back to work, although am working from home as I said last week.  I don't have a timeline for when I'll return.

Day four of the neck brace

The first night I had to sleep in this neck brace was fairly easy, which probably had a lot to do with the 2 vicodin that I took.  The nights after that have been a bit tougher - tossing and turning.  The brace is a lot more uncomfortable than I thought it was going to be.  It has to be on tight so it keeps my chin up, which means the back presses into the incision site.  I guess there's isn't much more to say about it - two weeks in a neck brace sucks, no matter how you look at it.

Jeff is away at his yearly trip to San Diego (aka Man Diego) and I'm working on the laundry room while he is gone.  Our laundry room is a pit, there isn't much getting around that.  

The Grover-blue walls have been primed now, as have the cupboards.

Projects are always bigger than they seem...  I'm trying to Killz the cupboards but some kind of stain is seeping through all three coats of it, so I have to find some kind of sealer to prevent that from continuing.  Jeff tore out the small (and very gross) vanity/sink that was in there, only to discover there was no flooring but cement underneath.  Looks like we'll be doing new flooring in there, too!  

My goal here is to get everything primed and the cupboards back on and the room back together.  We'll be painting it but we will want to do that after the new floor is in and the molding is up.  One thing after another, it just gets bigger and bigger.  Isn't that the way it always goes?  Nothing is ever as simple as it seems.

Special delivery

Just received the neck brace.  This is going to be a long two weeks.

still waiting.

As rough of a time as I've been having, I realize something.  I thought the hard part of this whole thing was the stay in the hospital.  And the few weeks after.  And that was hard.  But it really doesn't compare to this kind of hard.  Because the time in the hospital and right after was supposed to be hard.  It isn't supposed to be hard any more.  I'm not supposed to still have deafening ringing in my ears, or headaches, or leg pain, or exhaustion.  I'm supposed to be better.  I think that's what makes it so hard right now.

I'm still waiting on the neck brace.  Super irritating, I paid for rush shipping but it's been 4 days.  I'd love to give them an angry call, but I don't have the energy for that.

In other news, I've begun working from home more regularly from home.  Thanks to Dropbox!  It been super helpful, Rachele just drops the files for me to work on in there, I work them, and then she grabs them back out.  It's very cool.

Waiting for the delivery

My mom helped my find the right neck brace that I'm supposed to wear, I had to order it online because apparently the general population has a short neck.  Boo to all of you short necked people!  It was hard to find something that was tall enough without being huge length-wise.  I learned something new - the circumference of my neck is 13 inches.  Who knew.

I still wait to improve.  I'm sleeping better, although now I'm sleeping a ton.  Maybe that means my body is healing and needs a lot of rest.  I hope so.  I still have headaches, worse than before the surgery, as well as aches in my neck and legs.  I will wait and see what 2 weeks wearing a neck brace does and then go from there I suppose.

What a pain in the neck.

If you read my previous post, you know that I am to wear a neck brace for the next two weeks.  Who would have thought it would be a huge pain in the ass to find one?  Apparently I have a very abnormally long neck, which is making things harder.  I just want to hurry up and find one so I can hurry up and be done.

6 Weeks: Backslide

I just returned from my 6 week follow up with Dr. Heffez.  My dad and I traveled to Milwaukee from my parent's house in Chelsea, MI.  It's about a 6 hour drive, then I flew out of Milwaukee back home.

Long story short is this: The new MRI images are amazing.  I don't have a copy of that MRI but am hoping to get one soon.  The images look totally different, there is a ton of 'white space' around my brain stem now, and the arteries aren't even touching the brainstem where they used to be distorted into almond shapes before because they were being crushed.  Dr. Heffez even pointed out the plate he put in to 'keep my brain from falling out.'  His words.  It was funny.

That being said, he is not happy with the lack of progress I have made and was hoping for more relief from my symptoms.  He looked back at his post op notes and he said there was 'a lot of deformity that was corrected' so I think there was more than he thought initially.  He is pretty baffled by my leg pain, but does want to give it more time because there was so much damage that needs to right itself.

He looked again at my cervical spine MRI and my lumbar spine images.  In the lumbar spine he is looking for something called tethered cord (TC), which means basically the tissue of the spinal cord attaches to the spine sort of, and causes a lot of discomfort and leg pain.  I have a bit of 'abnormal activity' in my 4 lumbar vertebrae, and he said if it were any lower down the spinal cord it would be considered tethered cord.  But since it isn't, he's skeptical.  He's also skeptical because I present some symptoms of TC but not all the classic symptoms.  He is baffled, I think.  Which is not what I want.

He is also a little concerned about a bit of my cervical spine (neck) images.  It's hard to explain without an image, but basically there's a part of the lower brain stem/upper spinal cord (not really sure what it is, to be honest) that is supposed to 'float' within the spinal fluid column.  In my image, it shows the inner cord to start in the middle, go down a bit and veer off and touch my vertebrae.  That's not good, I guess.  So what does that mean?

That means I now need to wear a 'soft cervical collar' aka a neck brace 24-7 for 2 weeks.  The hypothesis is that if I spend a lot of time with my chin vertical and not tilted down (tugging on that spot that's connected to the bone) it will give me relief.  Wearing the brace is sort of an experiment - if I experience relief, then I guess there is quite a bit of physical therapy and postural therapy that can be done to really improve that.

I guess the bottom line is that he wants to see more improvement, but because there was so much corrected in there I need more time.  He is fairly baffled by the leg pain, so I think he's trying the neck brace to try to figure out that pain, and some of the other pain may resolved itself while I continue to heal.

I don't have to tell you that I'm frustrated, I think that's obvious.  And to feel like I'm going backwards - being able to do more, then having to be confined to a neck brace feels like a backslide.  It is what it is.  If I get any tryingtobefunny comments about the neck brace, I will definitely punch said person in the throat.  Not in the mood to joke about this.  Annoyed.  Mad.  So let's just all pretend it doesn't exist, ok?

Well wishes

First, I want to wish my facebook Chiari friend Trina good luck - she has her surgery on Tuesday (the day before my 6 week check up appt).  Trina, you'll do awesome.  There's nothing to say to lessen your fear, but know that I'm pulling for you and hoping for a speedy recovery for you!  The hospital is tough, but the ICU nurses are awesome, they will take very good care of you.  Keep your thumb on the pain button. =)

Tomorrow we leave for Michigan, then my dad and I travel to Milwaukee for my appointment.  I get another MRI and then meet with Dr. Heffez.  Hopefully my dad and I will be able to stop by Kopp's and try their sundae of the month.  I would get another MRI just for some Kopp's custard.  Shoot, I would get another MRI for a visit to Northpointe Snackbar.  (It's funny how familiar Milwaukee is becoming in my mind.  And strange how fond my memories of that place are.)

On another note, I went into a hospital yesterday.  I had no idea how jarring that would be for me.  I'm interviewing to volunteer with Dozer at Swedish Hospital in Edmonds.  I walked in (Dozer wasn't with me this time), I was fine...  Until I saw someone wheeling by on a gurney...  My stomach dropped and I immediately had butterflies fluttering around in my stomach.  It definitely brought me back to that morning before surgery.  I have never had anxiety dealing with hospitals, not even though I've had a million MRIs and X Rays and CTs and all kinds of things.  But after my surgery experience, I have a whole new outlook on hospitals.  I think it may end up being a blessing in the end, hopefully that will help me get in the shoes of the patients that Dozer and I see...  I won't start visiting for a few weeks, so I can get a bit more distance between that time and my surgery.  That was a hard time.

Recovery: Mac and cheese

At the suggestion of my friend Laura, I will start putting the recipes I'm trying during this recovery time.

I made this mac and cheese the other day.  Here are my suggestions:  add a bit of milk, lessen the amount of bread crumbs (they are overpowering) and add more cheddar!  It isn't cheesy enough without more cheddar.  With those changes, I'd give the recipe 4 stars.  Without them, 2 stars.  It tastes good, but it more a casserole than mac and cheese.

The sun is showing it's pretty little face today.  I'm headed to Steven's Hospital to start my volunteer orientation so that Dozer and I can visit as a pet partner team.  Next week I will be at my 6 week follow up appointment with Dr. Heffez.