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Archive for July, 2009

August 19th at 11:30 am.

I think we’ll just do a day trip and leave Kate here in Idaho Falls with someone.  If we go overnight and take her we have to worry about who will watch her during my appointment, getting the dogs into a kennel for a couple of days, etc.  Logistically it’s easier to go there and back the same day.  Tiring, but easier.

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Appointment Status

I have an appointment scheduled for August 27th with a neurosurgeon here in Idaho Falls.  I am not confident at all in his ability and may cancel the appointment outright if I can get in somewhere else sooner.  When I made the appointment I was told “he has a few chiari patients”.

I’m working with a doctor that practices with the University of Utah Neurosurgery Group in Salt Lake City.  I’ve heard really good things about Dr. Schmidt and am more confident in his experience.  His nurse told me that he’s done 4-5 decompression surgeries just this month.  My MRI results and medical chart were faxed to his office.  He looks through everything, assesses my case and then prioritizes it based on need/severity.  An appointment will be made based on how quickly he thinks I need to be seen.

I was hoping to know something by today — everything was faxed down on Monday.  Unfortunately, for some reason, my information was given to another neurosurgeon in the practice so Dr. Schmidt hadn’t even looked at it yet.  His nurse tracked down my files and gave it to him to review.  Hopefully we’ll know something tomorrow or early next week.

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Welcome

This blog officially “launched” yesterday.  Meaning that I finally had it ready enough to start giving out the address.

So for those of you joining the party — welcome!  Although it’s not great circumstances that prompted this blog, I’m glad to have so many people along for the ride.  I couldn’t do this without a tremendous amount of support.

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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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Chiari Malformation

Chiari malformation is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.  When the cerebellum is pushed into the upper spinal canal, it can interfere with the normal flow of cerebrospinal fluid (CSF) that protects your brain and spinal cord. This impaired circulation of CSF can lead to the blockage of signals transmitted from your brain to your body, or to a buildup of spinal fluid in the brain or spinal cord. Alternatively, the pressure from the cerebellum upon the spinal cord or lower brain stem can cause neurological signs or symptoms.

Joe-Jane-Chiari

Chiari malformation is diagnosed when the cerebellum herniates 3-5 mm below the cisterna magna (horizontal line “A”); typically the cerebral tonsils are 0-3mm above it.  Point B on the illustration shows where the chiari measurements are taken for diagnosis.  Mine currently measures 8mm.  Solidly past the diagnosis criteria.

shapeimage_2

Headaches, often severe, are the classic symptom of Chiari malformation. They’re typically precipitated with sudden coughing, sneezing or straining. People with Chiari malformation also can experience:

  • Neck pain (running down the shoulders at times)
  • Unsteady gait (problems with balance)
  • Poor hand coordination (fine motor skills)
  • Numbness and tingling of the hands and feet
  • Dizziness
  • Difficulty swallowing (sometimes accompanied by gagging, choking and vomiting)
  • Vision problems (blurred or double vision)
  • Slurred speech

Less often, people with Chiari malformation may experience:

  • Ringing or buzzing in the ears (tinnitus)
  • Poor bladder control
  • Chest pain, in a band-like pattern around the chest
  • Curvature of the spine (scoliosis) related to spinal cord impairment
  • Abnormal breathing — specifically, sleep apnea characterized by periods of breathing cessation during sleep.

Some people with Chiari malformation also develop a condition called syringomyelia, in which a cavity or cyst (syrinx) forms within the spinal column. Although the mechanism connecting Chiari malformation with syringomyelia is unclear, it may be associated with injury or displacement of nerve fibers in the spinal cord. When a cavity forms, it tends to be filled with fluid and can additionally impair the function of the spinal cord.

abnormal_50

Chiari malformation is uncommon, but improved imaging tests have led to more frequent diagnoses.  It affects about 1 in every 1,000 people.

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A Tour of the Place

Over the last week I have discovered how many people are concerned and want to be informed of what’s going on.  As I/we go forward from here and begin telling others, I imagine that more will want to know as well.

The purpose of this blog is to share  this journey with as many people as I can.  It will be a place for me to discuss the condition in general, my symptoms, appointments, possible treatment options and probably most importantly, the emotional toll it is all taking.

The setup of the page is still in progress and I’ll try to spend a little time here and there to address each topic individually when I can.  But for now, you can read the abbreviated back story under the “About Me” tab at the top of the page.  Next to it is a tab where I will keep a calendar of sorts detailing appointments.  Along the right-hand side of the page there are links to recent posts and comments, basic information on chiari malformation, doctors and clinics, literature and various places to show your support for chiari awareness.

There is also a link at the bottom of the page to add the posts to Google Reader.

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More Conclusive Information

When I had my appointment last Monday, I was only told that the MRI showed a chiari malformation and the very basics.  My provider said, “[he didn’t] make enough money to say anything more”.  I was too shell shocked to ask for size measurements or anything else.  I was stumbling over his referring my case to a neurosurgeon.  I just kept hearing “surgeon” over and over again.

One of my fears has been that the measurements would put me in that gray area for classification.  Chiari malformations are typically diagnosed when there is 3-5mm tonsillar herniation (dislocation) into the spinal column.  I didn’t want to face that, *maybe* it should be diagnosed as chiari, *maybe* it shouldn’t.

Today I got copies of the MRI and report from the imaging center in town.  As soon as I was in my car, I opened the envelope.  The report shows an 8mm herniation — solidly over the classification measurement.  Enough that it guarantees appointments with neurosurgeons.  Enough that it is conclusive that I do have a chiari malformation.

There is mixed emotion that comes with this.  A sigh of relief as we will avoid that gray area; an increase in fear for what lies ahead.

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