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January’s Story (Chiari Malformation)

January's Story (Arnold Chiari Malformation)From the moment I was born, my parents knew there was something seriously wrong with me. I was constantly crying in pain and nothing would soothe me. They started taking me to doctors around a month old. The doctors told my parents that some babies are just fussy and I would eventually grow out of it. This “phase” lasted a very long time.

The headaches started around the time I started school. The headaches were debilitating enough that often my mother would have to get me from school because I couldn’t lift my head from the desk. The doctors told my parents that I was suffering from a chronic childhood migraine syndrome and that puberty would make the headaches less frequent and less severe. Over the years, my parents took me to several doctors, only to get the same answer.

During my routine seventh grade physical, the doctors conducted a hearing exam and found that I was legally and truly tone deaf in both ears. We got a chuckle out of this since my entire life my voice has always been unsteady and I couldn’t carry a tune in a bucket.

A couple years passed and I realized that I had difficulty focusing my vision and difficulty being steady on my feet. Which, was also a huge joke in my family that my middle name definitely wasn’t Grace. I was constantly falling and running into things. During my physical for ninth grade, I failed my eye exam and was referred to an eye doctor. Once it was determined that the pressure behind my left eye was increased a great deal, I was sent to a specialist to determine whether or not I was suffering from early symptoms of glaucoma. The specialist determined that I was suffering from migraines with auras and prescribed migraine medicine to help combat the headaches.

The headaches never ended. In my 20’s I was still suffering from debilitating headaches and after having my gallbladder removed in 2008 and dealing with chronic nausea afterwards, I sought the help from a neurologist. He told me it sounded like I was suffering from several migraine disorders, including migraines with auras and abdominal migraine syndrome. They prescribed anti-seizure medicine and major anti depressants that made me a walking zombie.

Over the years, I just got worse. The headaches were worse than ever, my body ached all the time, my hands and feet would go numb, I had a chronic sore throat, constant ringing in my ears, pain in my neck and upper back, chronic fatigue, chronic insomnia, complete unsteadiness, and in general I just always hurt and always felt ill. I was seen over the period of five years, nearly twice a month with a new symptom or one that was so irritating and wouldn’t go away. I was prescribed pain medicine, anti nausea medicine, migraine medicine, anti inflammation medicine, muscle relaxers, anti depressants, antibiotics and NOTHING was helping. I began to lose hope and fell into a deep depression.

In August 2013, my father was diagnosed with non-Hodgkin lymphoma. The same time, I started falling and blacking out, which I attributed to stress. In September 2013, I lost my job of 14 years. I was severely depressed and wanted to die. My husband had me hospitalized for severe depression. While in the hospital, the doctors asked me why I was so distraught. My only answer was, “I hurt, physically and emotionally.” I couldn’t explain the pain anymore, I had gotten used to it…I was still aware of it, but my physical pain turned into anger as the years passed with no answer. They agreed that I was probably just emotional from the life stressors, and I was released three days later.

On October 23, 2013, I fell and blacked out for the third time in a matter of weeks. Visions of my dad going through chemo ran through my head. I woke my husband up around 1 am and told him what had happened. Sobbing, I told him I believed I had brain cancer. I sobbed in his arms for about an hour and lied awake all night until I could call the doctor in the morning. They got me in first thing in the morning. I told my doctor all of my symptoms over the last few years and told him it all matched symptoms of a brain tumor. He ordered a brain MRI stat, which I had never had before. They called back immediately after the radiologist read my report. The diagnosis; a 12mm Arnold-Chiari malformation and hydrocephalus….my brain had “fallen” into my neck, completely blocking the flow of CSF fluid, causing the fluid to build on the back of my brain and put pressure on the part of the brain that controls all muscle function. I needed brain surgery.

In November 2013, we found a doctor that agreed to take my case and specialized in spine and neck disorders and Arnold-Chiari malformation. Since the condition is rare, and only present in about 1% of the world’s population and typically present under a 5mm herniation…I was skeptical that I’d receive proper care. My husband and I met with the team of doctors, and my husband watched as I failed every single neurological exam. I had basically lost ALL my reflexes and my muscles were extremely weak. They scheduled me for brain surgery, allowing me to spend Christmas with my family.

A week later, I fell again and the doctors bumped up my surgery, fearing I would suffer permanent brain damage. They agreed to my pleas to just let me spend one last Christmas with my four children and my husband, but warned me that waiting any longer would greatly increase the risks of permanent brain damage. I was scheduled brain surgery for December 27, 2013.

After a tearful Christmas, December 27th reared it’s ugly self. I didn’t sleep at all the night before, I cried over the top of my children all night long, I walked around taking everything in one last time. “Just in case I don’t make it, please take care of my children,” I prayed for the first time in my life. In fact, I argued with God all night long. My mother and husband were attending the surgery as support and I could tell my mother had cried all night long as well. We all managed to hold it together and make the 45 minute drive to the hospital without crying. We made it through admitting and pre-surgery holding without a tear. We even cracked jokes with the team of doctors about actually finding a brain in there. They went over the whole procedure with us; I would be having a suboccital crainetomy, laminectomy of c1 and duraplasty. They would be removing over two inches of my skull, removing my c1 vertebrae, sewing in a cadaver patch onto the “skin” around my brain and screwing in a titanium plate to cover the opening in my skull. I made it to the part where they were getting ready to take me to the OR and lost it. So did my mother and husband.

The surgery lasted four and a half hours and the doctor came out to tell my family that I was in recovery and should be out in an hour. The surgery went well, the only hiccup was that my 12 mm herniation was actually a 17 mm herniation and was completely compressed, so they ended up having to remove c2 as well. My family waited for several hours to see me, with no word on the status of my condition while in recovery.

While in recovery, they administered Morphine, a drug I had never had before. I had an adverse reaction to the drug, and my heart stopped and I quit breathing. They were forced to administer Narcan, a drug used to reverse the effects of Morphine and other powerful narcotics. My family finally saw me 10 hours after my surgery began. It was only then that they informed my family and I of the close call in recovery.

I spent four days in the hospital in the neurosurgery department’s west wing. I was suffering from a severe form of optical neuron “sparks” after surgery. The first day, I was allowed NO narcotic pain medicine until all the Morphine had left my body. In severe pain, I spent four days in complete agony throwing up everything in my body. I started throwing up liver bile on day two. I was on so many drugs, I don’t remember much of the stay at all other than I literally could not move because it hurt so bad and I refused to eat or drink anything. When it came time for me to walk, I refused, I could barely open my eyes, I knew I couldn’t walk. On day four, the doctor forced me out of bed to a chair and realized that my muscles were just too weak to walk unassisted. I walked with a walker for five weeks after until regained enough strength.

I was prescribed so many meds to go home on because of the amount of pain I was in. 1800 mgs of Gabipentin per day, oxycodone, valuim, flexeril, etc. I’ve been told I could barely say my own name. I don’t know….I don’t remember a single thing for the first three days I was home. The extreme pain left me in agony for about two weeks, then things FINALLY started looking up. The optical “shocks” from my nerve endings being severed were healing. I could open my eyes again, the stitches from my six inch incision on my head were taken out and I was beginning to feel a little better, although I was still very weak. Things seemed to be going great and I was healing well….until my one month zipperversary approached.

On January 24, 2014, I noticed fluid leaking from the bottom of the incision that had burst open. The fluid was leaking from my nose, ears, tear ducts and my fresh scar. I was rushed to a local hospital and transferred immediately to my neurosurgeon at another hospital. They stitched the leak in my neck shut, and started giving me a ton of caffeine to help stop the leak. It seemed to have worked, so they sent me home a day later. Three days later I noticed the back of my shirt was sopping wet, so I reached back and found that my incision was leaking again. I called my surgeon and I was sent back to the hospital, where I spent eight days and underwent a second brain surgery. The cadaver patch they sewed into the “skin” (dura) of my brain, had failed to take and I was leaking CSF (spinal/brain fluid) outside of my brain and spine. It needed to be repaired immediately. They cut my six inch incision open again and repaired the leak with a synthetic patch and did NOT administer Morphine this time!!

Once again, my nerves had been severed and I was having optical “shocks” shooting from the back of my head to my eyes. Three more days of vomiting and intense pain and I was sent home. Only this time, I had a migraine from hell to go along with it all. Two days of absolute agony and I was sent back to the hospital. Unable to open my eyes, eat or drink, and barely responsive. They dosed me up enough to make me forget who I was and sent me home.

It’s been four months since my last brain surgery and to the dismay of myself, I’m almost normal!! Surgery nearly CURED my headaches (I still get them from time to time, but they’re not nearly as debilitating). My numbness in my hands and feet are less frequent, as are my dizzy spells. I still am fighting chronic pain and fatigue, along with a horrible case of insomnia and PTSS from enduring so much trauma in a short amount of time. I’m awaiting a third surgery to correct a retro-flexed ondnoid and a complete fusion to c4 in my neck. But, out of everything I’ve been through, I’m happier and more appreciative of life. I’m happy to FINALLY have an answer to all these years of pain and suffering. Even though there is no cure for Arnold-Chiari and I will go through good times and bad with my illness for the rest of my life….just knowing gives me hope for the future. Every day I will live with this, every day I will fight this, but to finally have the correct diagnosis and to know that everything I feel is NORMAL for someone living with chiari, gives me great strength to fight through every obstacle thrown my way. My illness has given me strength, not made me weaker. This is what I have learned by fighting an incurable disease. It gives me the strength to see the good in every bad situation.

Submitted 06/02/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

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One comment

  1. Jackie

    Thank you for sharing your story! Please post updates if possible. Best wishes in your recovery!

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