My Chiari Story - Part Two

When we left off yesterday, I had just had an MRI of the brain and the results came back showing "Chiari Malformation of 5 mm". The neurologist whom my primary care doctor referred me to said they could not see me for 6 weeks. At this point, I felt that my condition was rapidly worsening.  I was scared to death and I desperately wanted answers. I began to research Chiari even more. I finally found that there was a neurosurgery group in Cincinnati, Mayfield Clinic, who had a specialized center for persons with Chiari Malformation. Their site was extremely informational, and recommended that any person diagnosed with Chiari consult with a neurosurgeon. The site also described a surgery that could treat the condition and possibly relieve some or all of the symptoms. That was my first glimmer of hope!

Source

I called the Mayfield Chiari Center appointment number listed and one of their very helpful patient reps walked me through a detailed interview process about my MRI results, current symptoms, past medical history and then instructed me to send my MRI report to them. I did and within a week, he called back and I was scheduled to see one of their physicians. It still was going to be a month before I saw the doctor but I finally felt that I was on the right track to getting some answers and help.

On October 24, I awoke with a severe headache…the worst one I had ever had. It was unrelenting despite the prescription pain medicine I took. Along with the headache, I had right arm and leg weakness, and tingling in my right hand. It was so scary! My parents and husband gathered by my bed and prayed over me for relief from the pain. Within an hour, the headache had eased some and I was able to rest. From that day forward, my symptoms were worse than ever. I was never without a headache and pressure in the back of my head. My vision became blurry at times. I was very dizzy and could not bend over without feeling a huge increase of pain and pressure in the back of my skull. I also could not lay flat without getting horrible pain and pressure, thus causing a lot of sleep issues for me.

On November 14, I was finally able to see a neurosurgeon at Mayfield Clinic. He agreed the my MRI did show Chiari Malformation and my symptoms did sound like they could be related to Chiari. He stated that to be sure, I needed to have a specialized test called a Cine-MRI, which checks for adequate flow of cerebrospinal fluid around the brain. What can happen with Chiari Malformation is that the herniation of the cerebellar tonsils can cause blockage of the cerebrospinal fluid (CSF), causing increased pressure in the head and also resulting in compression of the brain stem, other brain tissues, and cranial nerves. If this blockage goes untreated, it can cause a build up of CSF on the spinal cord called a syrinx or syringomyelia. This can lead to paralysis. The blockage can also cause many other issues inside the skull.

If the Cine MRI showed that I had blocked CSF flow, then I could potentially be a candidate for a surgical treatment.

The following week, I had the Cine MRI. It wasn't as bad as I anticipated because it only took 15 minutes. I then had to wait 3 more weeks before I saw the neurosurgeon again, to get my results. That was the longest 3 weeks ever! Absolutely grueling!! But, I held tightly to God and He faithfully gave me the comfort of His love and peace!

In the meantime, my symptoms only continued to increase in number and severity. I was having more painful daily headaches and an increase in the number of weekly severe headaches. These were my symptoms:
Daily headaches and head pressure in back of head. (I was never without a headache)
Severe, debilitating headaches 3-4x a week.
Increase in headache pain/pressure when bending over or bearing down, coughing, sneezing
Dizziness
Balance issues
Ringing in my ears
Tingling in my right arm, hand and foot.
Weakness in my right arm and both legs.
Diminishing fine motor skills. (I dropped things a lot)
Blurred vision, spots in my vision
Forgetfulness and memory issues, overall "foggy" thinking
Insomnia
Nausea

I saw a neurologist on December 3rd and he stated that he felt my symptoms were from Chiari and felt that I could benefit from surgery if a candidate. He started me on Amitriptyline to help with the headaches (which never helped at all).

Finally on December 12th, I returned to the neurosurgeon. He stated that my Cine MRI did indeed show a blockage of CSF flow and Chiari Malformation of 8 mm. He stated that with my rapidly worsening condition and the results of the MRI, I should consider having surgery. The surgery is called Posterior Fossa Decompression. Basically, what they do is surgically make the opening at the base of the skull, called the Foramen Magnum, larger and remove the back portion of the top of the spine (C-1). They also cut open the outer layer of the brain, the dura, and sew a patch in place to allow the brain more room and achieve normal CSF flow.
If you are curious, here is a more detailed description of the surgery from Mayfield Chiari Center site:
http://www.mayfieldchiaricenter.com/chiari_surgery.php

My neurosurgeon felt that I had a very good chance of the surgery being successful and relieving my headaches, head pressure and severe neurological symptoms. The surgery also halts the progression of the condition thus preventing further damage to the brain. He advised me that he could not guarantee that it would relieve all of the symptoms I was having, because Chiari and the blockage of CSF can cause damage to the brain tissue and nerves which may be irreversible. He also said, "Surgery is only a treatment, not a cure."

My surgery was scheduled for January 25, 2013. As devastated as it was to hear that I needed brain surgery, I was relieved that there was a treatment that could halt the progression of the condition and hopefully relieve the severe symptoms I was living with. I felt such a peace from God throughout this whole time. I knew that He was faithfully guiding my steps, leading me to the right doctor who could help me, giving me the strength I needed to get through each day, and comforting me with His love in the darkest of times.

Throughout this entire time and up until the day before my surgery, I continued to work 2 days a week as a RN. By the grace of God, I never had severe headaches while at work. I was able to manage the worst of my symptoms with medication, without impairing my abilities in the least. I only missed a couple of days or had to leave early a few times throughout those months. I look back now and realize that I was stressing my body very hard, really beyond what I should have, but I did what I had to do at the time. I have often wondered how in the world I managed, but I know I did not do it with my own strength but with the strength God gave me every day.

Thank you for reading this part of my story! I will share about my surgery and recovery tomorrow.