Archive for the ‘fear’ Category

On July 20, 2009 I went to my NP to get the results from my MRI.  As I drove across town I had fears and anxiety about what I’d hear.  With the symptoms I was presenting his concern, although unlikely in his opinion, was multiple sclerosis.  Since I have familial history it wasn’t a complete shot in the dark.

There was no way I was prepared for what I heard.  It was that appointment where he told me about the chiari malformation.  He also said that he knew very little about what it was, what it meant and what the prognosis was.  All he knew is that someone who got “paid more money”, i.e. a neurosurgeon, needed to talk to me about it.

After leaving the office that day, I sat in the parking lot stunned before starting my vehicle.  I had been preparing myself for something I was familiar with.  Not something that I’d never heard of.  Worse yet, not something that my doctor couldn’t even tell me much about.

When I looked at the calendar yesterday, I could hardly believe it has been a year since that appointment.  What an amazing year it has been!


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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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Avoidance Issues

Since the appointment in Salt Lake City, I’ve focused my time and attention on the to-do list that seems to be a mile long.  I’ve been working my way through phone calls and emails to let people know what’s going on.  Trying to figure out lodging for everyone while I’m in the hospital; scheduling family/friends to help with my recovery; looking at Halloween costumes for Kate; coming up with birthday ideas for both her and Cris.

Focusing on this little stuff keeps me from thinking about the overall picture.  This trivial stuff allows me to push aside the big scary thoughts about surgery.  It allows me to stay busy enough that my eyes don’t fill with tears and my heart doesn’t skip.

My therapist told me that although it’s good I realize what I’m doing, I need to not do it.  I need to hand off some of those tasks to Cris and I need to take the time to focus on the fact that I AM having surgery in 34 days.

As hard as I try to avoid thinking about it, with each passing day it creeps closer and I need to be ready emotionally.

Maybe I’ll start thinking about it tomorrow.  Maybe.  😉

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The Long(er) Version

My head is still reeling from the appointment on Wednesday and I’ve been trying to make phone calls to let people know what’s going on.  Hence the delay in getting this up.

We met with a neurosurgeon at the University of Utah on Wednesday. I really, really like the doctor and felt very comfortable with him from the beginning of the appointment.  Although running slightly late for my appointment, he spent an hour in the exam room with us for the consultation.  He pulled up the MRI images from July and showed us exactly what was going inside this big brain of mine.

The Chiari malformation is crowding the spinal column and severely impeding the flow of spinal fluid in/out of my brain.  This crowding and obstruction of fluid flow is the cause for the headaches and the other symptoms.

He never faltered on the recommendation to do surgery. After his examination and looking at the MRI from July he immediately recommended it. According to him, I am a textbook case and he feels that I would highly benefit from decompression surgery.

To look more in depth at the cerebral spinal fluid flow, he ordered more in depth MRI’s.  Fortunately for us they could literally get me in right then.  While on the phone with our insurance company for pre-authorization I hurried across the medical building to the MRI department.  An hour and a half later I was dressed once again and discussing with Cris the next step.

Before the appointment, and on the drive down to Salt Lake on Wednesday, we had discusses what we would do IF he recommended the decompression surgery.  Although both of us are scared at the though of brain surgery we had agreed that if it was recommended we wouldn’t hesitate to have it done.  Neither of us wants it to progress to the point of permanent damage and we’re both concerned about how quickly is has been progressing lately.

To save us some phone calls we made our way back to the nurses’ station in the Neurosurgery Clinic to talk about scheduling surgery.  After another wait in the waiting room, we were brought back to an exam room and told that Dr. Schmidt was finishing up with a patient and would see us again to go over the day’s MRI images.

The new images further solidified his recommendation. Not only is the flow of cerebral spinal fluid severely compromised due to obstruction into the spinal column, there is NO flow at all into the back of my brain. When I move my head to look up or down the Chiari forms little pegs and “stabs” into the spinal column and cord.  If it’s not operated on and the pressure isn’t released, it has the potential to cause permanent damage and possible paralysis.

Surgery is set for Friday, October 2nd (6 weeks from today) down at the University of Utah. I will be in ICU for 24 hours post-surgery and will most likely be in the hospital 3-5 days total.  After my release he recommends that we stay in Salt Lake a couple of days to allow me to rest before attempting the 4-hour drive to Idaho Falls.

Recovery will be tough and long.  I am looking at 4-6 weeks of very limited activity afterward.  Full recovery could take months to a year.  It all depends on my body and how quickly it heals itself.

The neurosurgeon feels confident that the decompression surgery will provide fantastic relief and a vast improvement in my quality of life.

But frankly, it’s still brain surgery.  And that is scary.

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Pivotal Day Ahead

When I made the appointment three weeks ago, it felt as it would take forever for August 19th to arrive.  I felt like I couldn’t make it the three weeks to the appointment.  As I sit here tonight in the silence of the house I wish that I could stop time and not move forward to tomorrow.

I’m scared that the neurosurgeon will want to go ahead with surgery.

I’m scared that on the other hand, the neurosurgeon will want to treat the symptoms instead of surgery.

I don’t want to have my head cracked open but I don’t want to live doped on pain medications for who knows how long.  I want to feel better. I want to fix the problem instead of managing the symptoms.

I don’t want to worry about the headaches interfering with plans; I don’t want the vision disturbances to make me hesitant to drive; I don’t want the dizziness to become dangerous.  I don’t like how the symptoms are progressing.  It scares me (and many of you).

As anxious as I am for some answers and some directions, I know that tomorrow is a huge day for us.  Just as the initial diagnosis was life altering, I feel there is much hanging in the balance tonight, waiting for the pendulum to swing in one direction or the other.

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Treatment for Chiari

I don’t know if there is a defined “cure” for Chiari.  There is treatment for it, but like other conditions such as multiple sclerosis or fibromyalgia, it’s something you will live with the rest of your life.  Sometimes treatment can halt the progression of symptoms; sometimes treatment can reverse symptoms to allow you to live a normal life;  sometimes treatment is only temporary and symptoms will return years down the road.

Treatment for Chiari malformation depends on the severity and the characteristics of your condition.

In asymptomatic cases, there is no need for medical intervention.  Patients are scheduled for brain MRI’s periodically (typically once a year) and contact their neurosurgeon/neurologist if symptoms appear.

For patients that have tolerable symptoms or wish to hold off on surgical intervention, prognosis is typically pharmaceutical in nature.  Pain medications are used in conjunction with therapy to manage the symptoms.

Surgery is the approach doctors use most often to treat Chiari malformation if symptoms are interfering with the quality of life, if the symptoms are getting worse, or if the nervous system is being compromised. The goal is to stop the progression of changes in the anatomy of the brain and spinal canal, as well as ease or stabilize symptoms. When successful, surgery can reduce pressure on the cerebellum and the spinal cord, and restore the normal flow of spinal fluid.

Obviously I am NOT asymptomatic so simply monitoring the herniation is not an option.  I feel that the symptoms are affecting the quality of my life.  Whether or not the neurosurgeon(s) view(s) my symptoms in the same light remains to be seen.

Ultimately I want to find relief from this.  At least parts of it.  But there is a huge amount of uneasiness and fear about having the back of my head cracked open.

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Today’s Homework

My therapist told me today that I need to work on allowing myself to be scared.  I need to talk about the fear and all the “what ifs” that are crowding my already overcrowded head.  That keeping them inside isn’t good for me and they will come out even more forcefully the longer they are allowed to build, unaddressed.

I’ve been trying to minimize the emotional aspect as I talk to people to ensure I don’t add to their fears.  More than that though, I think I’m also afraid to face those thoughts and feelings.

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