A Visit to The Chiari Institute

December 8, 2008

Greetings family, friends, and all who reach this blogspot.

I have just returned from a two-day intensive medical appointment with Neurologists and Neurosurgeons at The Chiari Insitute in Great Neck New York. We flew into LaGuardia, a small airport that was only a 20 minute drive to The Variety House, a two-story brownstone for families and patients. It was nice to visit with others with similar medical histories (believe it or not). Some were even worse, so it made me grateful for the health I do have.

On the second day I underwent 3 hours of Imaging from the top of my skull to the bottom on my spine! The Imaging Technician looked just like my nephew Nathan, so between that and the sedative I took before the Imaging, I was a happy and compliant patient. As the MRI's went 'wack, wack, wack' I pretended to hear Native American Drumming, and soon it was all over. MRI's can be painful for me because of Trigeminal Neuralgia, but all went well.

On the third day I went to The Chiari Institute, where I met with a Nurse Practitioner, a Neurologist, and two Neuro-surgeons. The Neurologist showed me copies of my brain and spine Images, and there it was in front of me, the proof for my pain. I was glad to have taped the session, as after a while, I became numb as he delivered both GOOD and BAD news.

The GOOD NEWS is that I do NOT have Syringomyelia, which is a cyst of Cerebral Spinal Fluid (CSF) in my spinal cord. Thank you GOD!

The BAD News, or maybe I should say NEW news is that although my brain herniation of 7mm has not grown, I still have a CSF flow problem in the back of my brain, and I was diagnosed with the following:

1) Occult Tethered Cord Syndrome - that my spinal cord is matted down by tissues in my low back, and is tugging at my brain causing it to slump;
2) Cerebellar Slumping; that my brain is sagging; it may be caused by
3) An over large Foremen Magnum; which contributes to the slumping;
4) Cervical Instability; that my cervical spine is unstable, and
5) EDS (Ehlers-Danlos Syndrome) - A connective tissue disorder that causes joints to dislocate. They actually believe that many all of my medical issues are caused by this disease (hip dysplasia, degenerative disc disease, muscle weakness, and brain sagging);

So what does this all mean? Now what?

First of all, I begin traction for my neck and skull. I will be wearing a neck device during the day and when I drive that will allow me to protect my neck, and to pump up my skull, in hopes that this will improve the flow of CSF.

Second, I will consider taking Diamox, it's a drug that decreases the production of CSF. I have not yet decided whether I will take this, as it also can decrease potassium levels quickly.

Third, I will get my 'ducks in a row' and prepare for a Tethered Cord Surgery in 2009 in New York. This is a spinal surgery of my low back, and the recovery time can be much like having a spinal fusion. Which I'm all too familiar with. Prior to the surgery they want to do an Invasive Cervical Traction test. They will put my neck and skull in traction, and then wake me up and pump up my skull to see where I'm the most symptom free and comfortable. Great. Cannot wait:-) Actually, I've heard that it's not really that bad.

If you go to the Chiari Institute, bring pillows or chair supports, whatever you need to feel comfortable, because you do a lot of sitting, both on the day of testing, and at TCI. It's a nice office with TV's, but bring what ever you need to be comfortable.

Connie