- CASE FILE
I have an incurable brain disease; IIH. I've had 15+ surgeries with no end in sight, including 5 shunts. 3 in my brain and 2 in my spine.
ABOUT THIS CASE FILE
I was diagnosed 7 years ago with Pseudo-tumor Cerebri also known as Idiopathic Intracranial Hypertension on August 23, 2013. My body produces an abnormal amount of spinal fluid and it sits inside of my skull dormant and puts pressure on my brain. The doctors are only guessing at this point about the cause. They will also tell someone, we cannot die from IIH. They're wrong. Though death directly from IIH has not been proven, the complications from the disease will kill you. Stroke, aneurysm, seizures, infection, meningitis and suicide have taken many IIH patients. It started while I was in college obtaining my 2nd degree. A young wife and mother with a full life ahead. I went to a regular appointment with a local optometrist after having severe migraines and not being able to read the board in class for a few months. After THREE hours of the same tests they told me I would need to see a Neuro-Ophthalmologist immediately. Confused, I asked them why. They told me my optic nerves were swollen and without a spinal tap and MRI, they couldn't be certain what the actual problem was. Two days later I was seeing an Ophthalmologist and scheduling an MRI to rule out a brain tumor. The results proved to be negative and I didn't have a brain tumor. At this point I was not taking this seriously. I honestly thought I just needed some glasses and eye drops. About a month later, my doctor forced me to have a Lumbar Puncture (LP) also called a spinal tap. I had my first of 35 LP's and my opening pressure was 30. The "normal" is supposed to be between 10-20. I was immediately put on the drug Diamox. I had a severe allergic reaction that could have turned fatal had my husband not rushed me to the ER. Two weeks after that on December 4, 2013 I was having my first brain surgery to place my first Ventricular-peritoneal Shunt. At that moment, that's when it became real. I was laying in a cold, sterile hallway, waiting to be transported into the OR. I cried like a newborn baby. I was terrified. I was scared I would never see my children again. Thankfully I came through the surgery with flying colors and was surgery free for about a year and a half. Since being diagnosed I've had 15+ surgeries, a vascular angiogram, venogram, power port placed in my chest, 35 LP's, 100+ scans, 5 shunts total (3 Ventricular-Peritoneal, 2 Lumbo-peritoneal shunts), countless ER visits, shunt revisions, external LP drain placed. These are just a few of the procedures I've had done personally. Someone with my disease will need a primary doctor, neurologist, neurosurgeon, radiologist, general surgeon, neuro- ophthalmologist and many more depending on the patient but these are my regular doctors. There are many, MANY side effects to IIH. Just to list a few that I experience personally; nausea, vomiting, vertigo, lethargy, migraines, vision loss, tremors, memory loss, anxiety, depression, fatigue, anger, organ damage from medications and those are just a few. The migraines are the worst for me. Imagine taking a vice grip and squeezing your brain with it. I've been dealt a terrible hand, however I have decided to find the positive in this nightmare. I'm an avid advocate for IIH. We need a voice and I want to be that voice for those that can no longer speak or are afraid to speak. I've been in several local interviews with our news stations to bring awareness to IIH. My ultimate goal is to create a foundation to help fund research and eventually have a scholarship program for patients affected directly. We need more research. Without it, we won't have a cause and without the cause; we most certainly will not have a cure.