Friday, July 16, 2010

Dying to Get in my HEAD!

Well here goes...This blog will hopefully shed light on Arachnoid Cysts and Chiari Malformation and my personal experience with them both. And just maybe help someone else who has similar symptoms and is looking for answers, or as in my case has someone researching for them, since I spent the majority of this year unable to get on the Internet...Yes, brain surgery at 36. Here's my story!

I always been a real healthy girl, it's a rare occasion that I need to go to the doctor. It's usually a once a year thing for me. Anyway, I felt my first symptom January 9, 2010, when I almost fainted twice in one day. Not normal. I say almost, because I felt the spells coming on and put my head between my legs.

So, the following week it was time to get things checked out. My head felt kind of full sitting on my shoulders, but I had a light headed/faint feeling as well. Thought I was getting anemic, or that my blood sugar was low, maybe I was pregnant?? I got my blood checked and everything looked ok. I started eating every 4 hours just in case. I also felt a little more fatigued than usual. But, went on about my business.

By the end of February the symptoms were getting worst. I noticed them more at the end of a work shift, but they were always there. I had been to the Chiropractor a few times, traditional and non-traditional, would feel ok for a short time, then the symptoms would return. I was feeling dizzy now, like I was on a boat, or an elevator ride. We started calling it vertigo, however, apparently in vertigo the room is moving, in my case....I was moving. We got in to see an ENT doctor right away. He thought it might be the crystals in my ears, but recommended the Balance Center and an MRI. He gave me nose spray, just in case it was that swimmers ear I had been through 6 years ago after a cruise. Is an MRI really necessary?? I opted for the balance center. Needless to say, after my first visit, it looked like a had a slight nystagmus, she gave me some exercises to do. I worked on the exercises at home, apparently rushing through them, and making myself feel even's a blessing though, it scared me enough to get that first MRI.

This MRI w/contrast was not suppose to find anything, then the call came in that I had an Arachnoid Cyst on my Cerebellum. (whatever that meant...scary) I needed to get in and see a neurologist right away.

Arachnoid Cyst: (technical jargan)
Arachnoid cysts are fluid-filled sacs that occur on the arachnoid membrane that covers the brain (intracranial) and the spinal cord (spinal). There are three membranes covering these components of the central nervous system: dura mater, arachnoid, and pia mater. Arachnoid cysts appear on the arachnoid membrane, and they may also expand into the space between the pia mater and arachnoid membranes (subarachnoid space). The most common locations for intracranial arachnoid cysts are the middle fossa (near the temporal lobe), the suprasellar region (near the third ventricle) and the posterior fossa, which contains the cerebellum, pons, and medulla oblongata.

In many cases, arachnoid cysts do not cause symptoms (asymptomatic). In cases in which symptoms occur,
headaches, seizures and abnormal accumulation of excessive cerebrospinal fluid in the brain (hydrocephalus) are common. The exact cause of arachnoid cysts is unknown.

In my case I had an posterior fossa.

I met with my first neurologist and neurosurgeon, both saying lot's of people have Arachnoid Cyst, we don't think this is causing your symptoms, let's check other things. My MRI Addendum Report also said Right Tonsillar Herniation into the Foramen Magnum, which was pretty much just looked over.


Right Tonsillar Herniation:
In tonsillar herniation, also called downward cerebellar herniation,[4] or "coning", the cerebellar tonsils move downward through the foramen magnum possibly causing compression of the lower brainstem and upper cervical spinal cord as they pass through the foramen magnum.[5] Increased pressure on the brainstem can result in dysfunction of the centers in the brain responsible for controlling respiratory and cardiac function.

Tonsillar herniation of the cerebellum is also known as a Chiari Malformation (CM), or previously an Arnold Chiari Malformation (ACM). There are at least three types of Chiari malformation that are widely recognized, and they represent very different disease processes with different symptoms and prognosis. These conditions can be found in asymptomatic patients as an incidental finding, or can be so severe as to be life-threatening. This condition is now being diagnosed more frequently by radiologists, as more and more patients undergo MRI scans of their heads. Cerebellar ectopia is a term used by radiologists to describe cerebellar tonsils that are "low lying" but that do not meet the radiographic criteria for definition as a Chiari malformation. The currently accepted radiographic definition for a Chiari malformation is that cerebellar tonsils lie at least 5mm below the level of the foramen magnum. Some clinicians have reported that some patients appear to experience symptoms consistent with a Chiari malformation without radiographic evidence of tonsillar herniation. Sometimes these patients are described as having a 'Chiari [type] 0'.

There are many suspected causes of tonsillar herniation including: spinal cord tethering or occult tight filum terminale (pulling down on the brainstem and surrounding structures); decreased or malformed posterior fossa (the lower, back part of the skull) not providing enough room for the cerebellum; hydrocephalus or abnormal CSF volume pushing the tonsils out.

Under the recommendation of the neurologist, I did an EEG and EKG ( two week event heart monitoring devise). I had experienced some shortness of breath recently, so I went through with these tests. Most of the testing came back normal, yay...but she had some questions on the EKG, so off to a cardiologist I went. After another EKG and a heart sonogram, I was given a good bill of health from that cardioloist. Great knowing my heart was good, but still no real answers...I wasn't fixed.

By this time my head was very sensitive, it hurt to lie down, but once I did it was my favorite position, that's when I would experience less symptoms. I had headaches mostly in the back of my head...unlike any kind of stress headache I had ever had before.

My ENT recommended an inner ear specialist. They wanted to rule out inner ear damage that could be causing these symptoms, however, this doctor dealt with patience having brain tumors and said it could very well be that cyst. My VNG and Vemp tests all came back normal, which was a good thing, but still not fixed.

It's very important to find the right neurosurgeon...the right doctor. My husband was doing some research one afternoon and stumbled across Dr. Spetzler of the Barrow Institute in Phoenix, AZ. He deals with patience who have Arachnoid Cyst and believe them when they say they are experiencing these symptoms. I sent my records to him right away. By this time, I was unable to work, unable to really exercise, not on the computer, not reading, not watching TV, could not be around loud music, having daily headaches, a tender head, nausea, dizzy, light headed/felling faint, full head sensation, slight tremors, slight slurring of words/not thinking clearly/in a fog, and slight trouble swallowing. I would really feel light headed if I were to strain, so no lifting.

Your records get reviewed with his round table of doctors at the Barrow Institute and I received a phone call that Dr. Spetzler would take my case. They sent me a letter saying he would preform Chiari Decompression Cyst Fenestration surgery. Yes, that's a mouth full...but finally some real answers!! When you google Chiari Decompression, you get

Chiari Malformation: (more technical stuff)
The Chiari malformation is an abnormality in the lower part of the brain called the cerebellum. There are several different forms. The most common type is the Chiari I malformation (CM) which this article addresses. Less commonly, it may be known as Arnold-Chiari malformation, tonsillar herniation or tonsillar ectopia. Most cases of Chiari are congenital, meaning they are present from birth.


The most common symptom of Chiari malformation is a headache, which begins at the back of the head (neck) and radiates upward. The pain is often made worse or can be brought on by coughing, sneezing or straining. These activities are known as valsalva maneuvers.

Visual problems such as nystagmus (involuntary eye movements), double or blurred vision may occur. Balance difficulties, vertigo and dizziness also may be present. Some people may have cranial nerve compression. This can result in apnea (cessation of breathing), gagging, swallowing difficulties, facial numbness or syncope (temporary loss of consciousness).

Patients may have muscle weakness, particularly in the upper extremities, coordination problems, and gait abnormalities.

Finally real Answers!!! Now we could really start putting all the puzzle picses together. All the signs pointed to this type of surgery Chiari Decompression and cyst fenestration. I had even tried my options with a less invasive type clinic in AZ that has many brain tumor success stories, however, I soon learned from their experts that their method can't work on a cyst. They can break down a tumor, you apparently need to penetrate a cyst.

So yes, I went through with the surgery at St. Joseph's Hospital in Phoenix, AZ on June 17, 2010. I consider myself lucky to have found out what I have and how to fix it within 6 months. I've read numerous stories of people experiencing symptoms like myself, and not finding answers for 3-5 years.

I have to go for now, but I will be sharing pictures from my MRI in the next few blogs. I am currently in recovery...Praise God!!! And, will share more about it. I can tell you one thing, about 10 days post opt, it felt like my brain had be turned back on!

See you on my next post...thanks for taking the time...God Bless!
Stacey <><