Questions to ask at your Surgeon visit.

So I talked to my friend, Jessica. She requested that I give her some questions to ask at her upcoming appointment. So  I told her I would post what I could think of. Here we go....

1. How big is my Chiari?
2. How many cysts do I have on my spinal chord? and how big?
3. What are my options surgically? (start with the least invasvie options)
4. What are some pain management options prior to surgery? (Tell the doctor everything you've tried)
5. How many Chiari patients do you have?
6. How many decompression surgeries have you performed?
7. Will I need a shunt?
8. Do you have any information on Chiari that I could provide my family with?

That's all I could think of for now, but I hope it helps!

Research Question????

If more awareness is raised about Arnold Chiari Malformation, will researchers develop a cure?

My Hypothesis. $$$

Let me lay it down for you. If people had as much awareness about Chiari as they do about, lets say, Cancer, then maybe the Chiari foundations, what few there are, would have more money to do more research for treatment. So that people like me would not have to go through so many surgeries and live the rest of their lives in pain.

The Reason I Created This Blog.

This blog was made for my Sociology 131 class. The class is located at the EKU Manchester campus. I created this research blog for a grade, but in doing this I also hope to raise awareness about Chiari, if only to a few people.

What is a Zipper Head???

Zipper Head is a nickname that Chiari patients who have had the decompression surgery call themselves. The nickname refers to the scar left by the decompression surgery. It literally looks like a zipper, as if you could unzip the back of the head. I am a Zipper Head and proud of it :)

This is an actual picture of my "zipper". My scar goes from the bottom of my neck to my crown and is around 12 inches in length.

Taking this picture was the second time I had ever saw my scar. The first time was with two mirrors over a year post-op. I constantly run my fingers over it. I don't know why, but it has always been emotional to think about looking at it or actually looking at it.

It does look a little different compared to someone who has had only one surgery. My site was opened three times. Along with internal stitches, I recieved 28 staples from the first surgery, 26 staples  from the second surgery, and 34 staples from the third.

How do you treat Chiari 1?

Type I is generally adult-onset and, while not curable, treatable and rarely fatal. Decompression surgery is used on patients with significant size Chiari and patients who are severly symptomatic.


Once symptomatic onset occurs, a common treatment is decompression surgery, in which a neurosurgeon usually removes the lamina of the first and sometimes the second or even third cervical vertebrae and part of the occipital bone of the skull to relieve pressure. The flow of spinal fluid may be accompanied by a shunt. Since this surgery usually involves the opening of the dura mater and the expansion of the space beneath, a dural graft is usually applied to cover the expanded posterior fossa.




I had the decompression surgery as described above. The lamina of my first and second C-spine was removed. I did not have a shunt, and I had a Dura Seal patch placed on my dura instead of a graft.

How is it diagnosed?

• Diagnosis is made through a combination of patient history, neurological examination, and Magnetic Resonance Imaging (MRI). The radiographic criteria for diagnosing a congenital Chiari I Malformation is a downward herniation of the cerebellar tonsils greater than 5 mm below the foramen magnum.

• Other imaging techniques involve the use of 3-D CT imaging of the brain and cine imaging (a movie of the brain) can be used to determine if the brainstem is being compressed by the pulsating arteries that surround it.

• In the Syndrome of Occipitoatlantoaxial Hypermobility, cerebellar tonsillar herniation is typically only evident on an up-right MRI, due to the fact that the Chiari Malformation is gravitationally acquired by means of connective tissue weakness.

•  3-D CT imaging may aid in the diagnosis of related disorders such as retroflexed odontoid. Invasive cranial traction (lifting of the head off the spine) is often used as a confirmation of the diagnosis.

• The diagnosis of a Chiari II Malformation can be made prenatally through Ultrasound.

CT scans have never shown my Chiari. All my diagnosis have been done via MRI. And here's a little fun fact, I have to have an MRI done every six months. Sometimes I think I'll be radio active by the time I'm 40 haha.