Writing to Write

I learned the hard way this week, that I can NOT sew anymore until after surgery.  On Tuesday night I hemmed the new curtains for Kate’s room and made a quite valence out of the fabric I cut off the bottom.  It was no more than an hour of work, but completely knocked me out of commission for 24 hours.  Within 15 minutes of finishing one of the worst headaches I’ve had kicked in and kicked my butt.  I went straight to bed in an attempt to kill it before it got any worse.  The next morning I woke up even worse and called Cris in tears at 10am to come home.  For the first time in 20 years, I wished that we could call an ambulance for treatments; I honestly didn’t know if I could make the 6 minute drive into Urgent Care.

One of the before surgery “to do” items on our list was to get the trailer put back together and get out camping at least once this season (we’ve been out of commission this summer due to a horrible water leak, which caused us to tear most of the trailer apart to fix the damage).  We made the executive decision yesterday morning to put that on hold until next spring.  We’d much rather take a day next weekend and try to go to Yellowstone one last time before the park closes for winter.  There’s no need to make myself sick(er) by trying to plan and execute a weekend camping excursion.

We’re within days of signing the final drafts on our wills, medical directives, power of attorneys, etc.  We started talking about all of this stuff before Kate was born but never got around to actually doing anything about it.  After the Chiari diagnosis we felt, or more correctly, I felt it was imperative to get everything in order before surgery.  I’m not being fatalistic; I’m not scared that I’ll die.  It needed to be done.  This was just the incident that kicked us into gear.  Anyway, having to think about all of that stuff and make decisions is really hard.

Even with my sleeping pills, I’m struggling to sleep well.  I take forever to fall asleep and wake up early.  Unable to get anymore rest before needing to start the day.  What sleep I do get is filled with strange, random dreams.  I miss the nights of falling asleep easily and getting a blissful 8 hours of rest.

I’m starting to see glimpses of the stress all of this is putting on our household: behavioral issues with Kate, impatience in Cris, strained communication within our marriage.  I wish none of this had to happen.  I just hope we can all bounce back after recovery.

Today I’m tired, scared, hurting, angry, confused and optimistic.

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Quiet

I’m trying to take all of the thoughts bouncing around in my already crowded head and weave them into something eloquent.  Or just something coherent in general.  I’m not having any luck.

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The 2nd Stage

I was told by my therapist that I will cycle through the five stages of grief (denial, anger, bargaining, depression, acceptance) in regards to being diagnosed with Chiari and the upcoming surgery.

From the last couple of post I’m beginning to think that I’ve moved from the first stage of denial, squarely into the second stage.  Anger.  I have moments of depression peppered amidst the anger.

With only 17 days until surgery I’m not very optimistic that I’ll work my way through to acceptance before then.

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Things I’ll Miss

It’s hard when life throws you unexpected twists.

It’s hard when those unexpected twists prohibit you from fulfilling promises.

On June 1st, my youngest sister told me not to worry about making a trip to Michigan for her upcoming baby shower, that she’d rather have me there for Christmas for the birth of her baby.  I told her, “I WOULDN’T MISS IT FOR ANYTHING” and she “couldn’t keep me away from a baby shower”.

Her shower is set for November 7th.  Chiari and brain surgery will keep me from her baby shower.

I hate the things I’m missing out on.

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Distorted Perspective

For the last 3+ weeks, I’ve talked about surgery in the 3rd person perspective.  I’ve disconnected myself from the details to stay unemotional while talking about it.

Last week I was slapped upside the head with a slight realization about my hospital stay.  I’M GOING TO BE IN THE INTENSIVE CARE UNIT FOLLOWING SURGERY. The ICU scares the shit (sorry, but it does) out of me.  Even typing that makes my breath catch in my throat.

The ICU.  I’m going to be in ICU post-op.

(It doesn’t seem to be making any easier the more times I say it.)

The only experience I’ve had with ICU is when people are dying.  I associate it with really sick patients.  I need to start seeing it as a place for patients that need more watchful care.  As Cris said, “high maintenance” patients.  He reminded me that ICU is a good place to be following brain surgery.

I can get my head around the high maintenance part.  I need to get my head around the ICU part.  And quickly.

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The Surgery

As surgery creeps closer and closer (21 days!) I can no longer coincidentally forget to post about its specifics.  😉

The object of Chiari treatment is to stop the progression of symptoms, and relieve the existing ones. This may be accomplished by decompression of the brain stem, cerebellum and spinal cord, as well as re-establishment of spinal fluid circulation.

Thankfully (in my opinion), the surgery is performed with the patient asleep under general anesthesia. An area of hair about 2 inches wide is shaved at the back of the head from the bottom of the hairline to midway up the pack of the head. An incision is created from the occipital area at the back of the head down to the upper neck.  Once the incision is opened, the neurosurgeon will begin the task of exposing the skull and spinal vertebrae.

Decompression is achieved by removing the bony structures that are compressing the brain stem, the spinal column and the cerebellum. Bone is removed at the base of the back of the skull (posterior fossa decompression )and from the back part of the cervical one (C1) vertebrae (cervical laminectomy). In rare case, the lamina (roof bone) of C2 is also removed. The goal of the surgeon is to remove as little bony structure as possible.  There needs to be sufficient space created to allow the tissues to decompression and expand, but if too much bony structure is removed it can allow the brain to “slump” down into that newly created opening.  Thus creating more problems.

Once the sections of skull and vertebrae are removed the team will work to expose the dura mater of the brain.  The dura is a tough membrane that covers the brain and spinal column.  It is responsible for containing the cerebrospinal fluid.  The dura needs to be opened to allow decompression; it will not allow much decompression unaltered. In some cases, marked crowding is present despite opening of the dura.  In these cases the tips of the cerebellar tonsils are shrunk with electrocautery.  The tonsils are no longer functional brain tissue (due to the compression and lack of blood flow) so no damage will be done by shrinking them.

A patch of tissue will then be sewn into the opened dura to allow room for expansion.  Dr. Schmidt uses a bovine product called durepair as the patch.  Over time it will degrade and my dura mater will regrow to cover the area of decompression.

The tissues are then closed with stitches and staples are used to close the skin.

After surgery I will spend 24 hours in the intensive care unit at the hospital.  My total stay at the hospital will be 3-5 days.  The length of stay is dependent on how quickly I can get pain management under control and start moving around on my own.  After being released from the hospital we will stay down in Salt Lake City an extra couple of days to allow me to rest more before making the 3-4 hour drive back to Idaho Falls.

Recovery differs from patient to patient.  For the first 4 weeks I cannot lift anything heavier than a gallon of milk.  After that I can add 5 pounds every week.  At that rate it will be early December before I can even attempt to life Kate again.  Coupled with the lifting restrictions are restrictions on housework, cleaning, driving, etc.  I was told to expect to do nothing the first 6 weeks after surgery besides rest and focus on getting well.  After the initial recovery, we will discuss setting up physical therapy to help rebuild the strength and use of my neck.

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What Balances It

This is in no particular order either.

• I am grateful some days are better than others.
• I am grateful that I can get out of bed most days.
• I am grateful I have good doctors.
• I am grateful for good insurance.
• I am grateful to be able to seek multiple opinions.
• I am grateful the MRI was ordered in July.
• I am grateful there isn’t a syrinx in my spinal cord.
• I am grateful for my neighbors.
• I am grateful for my friends in town.
• I am grateful for my friends online.
• I am grateful for family.
• I am grateful for friends in Utah.
• I am grateful so many people are concerned.
• I am grateful to receive phone calls, emails and text messages checking on me.
• I am grateful for positive thoughts and prayers.
• I am grateful for the offers of help.
• I am grateful for 6 weeks of in-home help after surgery.
• I am grateful for a supportive husband.
• I am grateful I found the therapist I have.
• I am grateful she has given me the tools she has over the last 3 months.
• I am grateful for the amazing support network this creates.
• I am grateful to not deal with work and Chiari at the same time.
• I am grateful the surgeon feels we should see a great (if not full) improvement post-decompression.
• I am grateful we’re not facing daunting medical bills.
• I am grateful Kate is content to watch a movie in my bedroom some days.
• I am grateful she still likes to sit on my lap and snuggle.
• I am grateful we have the access to the medical technology we do.
• I am grateful Kate is young enough to not remember much of this down the road.
• I am grateful this list is longer than yesterday’s.

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In No Particular Order

• I hate Chiari.
• I hate the pain.
• I hate the headaches.
• I hate that my ears always feel plugged.
• I hate that I can’t stand up without taking a second to make sure I don’t pass out.
• I hate worrying about bending over.
• I hate having to evaluate if I feel good enough to drive.
• I hate the restrictions I’ve had to place on myself.
• I hate that it stops me from doing things I enjoy.
• I hate how it has turned our life upside down.
• I hate preparing for surgery.
• I hate thinking about surgery.
• I hate that I must have surgery.
• I hate the stress it has put on Cris.
• I hate the concern it causes everyone.
• I hate that Kate says her head hurts when she wants attention.
• I hate the medical bills.
• I hate battling with my insurance.
• I hate the doctors appointments.
• I hate the emotional roller coaster.
• I hate the lack of support groups in Idaho.
• I hate how often I talk about it.
• I hate feeling so alone amidst a wonderful network of support.
• I hate that I hate so many things.

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Cause and Effect

I measure the quality of a day based upon the pain I’m in and what I can do to relieve it.  Good days are days where I can take just ibuprofen or excedrin migraine and feel alright.  Bad days are days where I have to take my heavy duty meds (my migraine ones) and chase it with narcotics and sleep.

The problem with good days is that I find myself doing way more than I should.  When I feel good I push my limits and try to get as much done as possible.  I know that it’s me taking advantage of feeling good; trying to get caught up on all the things that have been pushed aside on the bad days.  Coupled with those neglected household chores is the “to-do” list I’ve written as pre-surgery tasks.  Which means plenty of thing to occupy my time with when I have a good day.

The downside is that after I have a good Chiari day and push my limits, I wake up the next day feeling horrible.  Sometimes it is immediately a “bad” day; sometimes it is a moderate day that progresses to bad.

Then the cycle perpetuates.

I know that I need to set limits for myself and not overdo it.  I’m just not following through on that very well.

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More Opinions

(Opinion #2)

Last week, Thursday I met with the neurosurgeon here in Idaho Falls.  At first he was very friendly, easy going and seemed genuinely concerned about my case.  About 5 minutes into the consultation my appointment with Dr. Schmidt at the University of Utah was brought up and his demeanor completely changed.  I had hoped he would be more open to the idea that I had sought a second opinion but it seemed as if he was offended that HE was the second opinion.  Due to scheduling, it just worked out that I didn’t get into him first.

The appointment with Dr. Greenwald didn’t set well with me at all.  He focused solely on the headaches and blew off all of the other symptoms.  Even the lack of spinal fluid flow to the back of my brain.  His recommendation was to see a neurologist and do a complete work-up on my headaches and try to find both a preventative medication and a rescue medication that worked more efficiently.  After all, they were “just migraines”.

I was upset that he didn’t seem concerned about the other symptoms.  Dizziness, blackouts, visual disturbances, etc. seem to be pretty important symptoms to just glance over.  At least in my opinion.  But I was somewhat concerned that I had tunnel vision in regards to surgery and perhaps I should listen to his advice and meet with a neurologist.

(Opinion #3)

Fortunately, the neurologist’s office had a cancellation yesterday and called me Monday afternoon to see if I could take the appointment.  I took it with some hesitation and debated canceling it to save myself the trip across town.  I’m glad I opted to keep the appointment though, because Dr. Garland reaffirmed the need for surgery and validated that my other symptoms shouldn’t be overlooked.  Much of his concern centered around the occurrence of blackouts that has recently developed.  His opinion was that new symptoms like that were progression of the Chiari and a direct result of the compromised spinal fluid flow.  He felt like I might have a history of migraines but the constant headaches now are certainly Chiari related and need to be addressed through decompression surgery.  In his opinion, it would be ridiculous to do a work up before surgery–a waste of both his and my time.  His hope was that my headaches would be completely resolved post decompression, but if not to contact his office in 6-8 months (to give myself sufficient time for recovery) and we’d discuss options and possibly a different course of treatment for them, then.

So 2 out of 3 doctors recommend surgery.  I feel better knowing that more than one professional feels strongly about the condition and needing to treat it.  There are still fears but no questioning the decision to schedule the decompression.

Onward we continue to march…

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