Wednesday, August 20, 2008

Why I think that doctor is wrong.

I thought I'd lay out the details, for my own benefit, of how I disagree with the surgeon's assessment that Chiari isn't my problem:

1) The two main determinants he used for his conclusion were the fact that my cerebellar tonsils are only herniated 6 mm, and that to him it looked as though my CSF (Cerebrospinal fluid) wasn't being impeded by the herniation.

a) Herniation on its own has been shown in recent years to be a poor determining factor for the diagnosis of Chiari. It is a symptom rather than the cause. Many people have severe symptoms occurring with a much smaller herniation that 6 mm (the radiologist who analyzed my MRI actually reported 6-8 mm for me), and some have much larger herniation with no symptoms at all.

b) Specialized tests, such as Doppler ultrasound and Cine MRI are used to determine impedance of CSF, and even these tests are not conclusive. This doctor spent perhaps 3 minutes (or less) reviewing the still images of my standard MRI when coming to the conclusion that CSF wasn't blocked.

2) My symptoms. There are many diseases and disorders that cause the symptoms I have, but it seems that holistically, they are a near perfect confluence of Chiari evidence. These telltale symptoms include:

-daily (sometimes constant as today) pain in the back of my head

-frequent headaches in my entire head, at one point occurring nearly 24 hours a day for 3 weeks (this was the initial impetus for my CT scan that revealed the malformation)

-a host of eye problems that have not subsided for many months, such as frequent reduced and blurred vision, and disturbing flashes or slow moving streaks of light

-ringing in my ears

-moderate insomnia over a prolonged period

-profound fatigue and pain in the muscles and joints

-numbing in my fingers (and tongue! That happened for the first time yesterday.)

-stiffness in my throat and obstruction of my airways at that point--this was my first symptom and it remains a constant problem, every moment of every day. Recently I've noticed that when I try to run, once I get up to an aerobic breathing pattern, I believe I have what is called a "stridor," which is sort of like wheezing, but is a single high-pitched tone that occurs in turbulent airflow as I inhale.

The list goes on and on. The important thing is that imaging concluded that I have Chiari I Malformation and before I ever knew what Chiari was I had daily pain in the back of my head. It's basically a slam dunk diagnosis. Now all I need is a doctor who agrees.

4 comments:

Chiari Mama said...

you need to go to a Chiari specialist to find out for sure . They are all over the US

Christine from WI said...

Dear Dan,
I commend you for taking responsibility for your own health and not just blindly trusting the first surgeon you saw! I was happy to read you are contacting the experts at the Chiari Institute. I wish I would have seen an expert instead of trusting a general neurosurgeon for my decompression surgery! I ended up permanently disabled when it was all said and done. Hang in there and stay strong! Christine from WI
P.S. My blog has my personal story on it (in just one entry) but is more of a reference library of good information about Chiari. I think you would find it helpful. Here's the address if you would like to check it out! http://christineschiariblog.blogspot.com/

lace1070 said...

Hey Dan ~ keep looking for a doctor who will look you in the eye and listen to you ~ really listen to you! If you can get to NY ~ The Chiari Institue or see Dr. Oro in Colorado ~ they are the experts. Don't lose hope ~ you are not alone in this journey ~ hugs ~ Lace
http://livelovelaugh-lace1013.blogspot.com/

Laura said...

Hi, I'm Danielle's friend.

As someone who is very familiar with head pain (chronic complex migraine with occipital neuralgia), I'm here to agree with everyone and say DO NOT GIVE UP.

Besides the pain in your head, prolonged CFS pressure on your eyes can cause permanent damage to your vision.

There are a gazillion Chiari websites out there now. Heck, Extreme Makeover built a house for a family that had it. I'm sure that a bunch of them will have information on how to get in to see a specialist in Chiari.

Make it your first priority after the move, because getting in to see these types of specialists can take months and months.

Good luck with the move!
Laura