Faith, Family, and the Right Neurosurgeon Bring HOPE for This Wife and Mother of Four

My name is Shelain. I am a 38-year-old African American suffering from Intracranial Hypertension. I  was diagnosed in 2009 after the birth of my second child. My family physician read an article on "pseudotumor cerebri" (an older name for Intracranial Hypertension). I was referred to a neurologist who had some knowledge of the disease but she was not willing to help me at all. She prescribed me Diamox (acetazolamide) and referred me to an neurosurgeon.  

Before I saw Dr. Dong Kim I had seven lumbar punctures. The first lumbar puncture level was so high they admitted me to the hospital. After the last lumbar puncture I had, I had a spinal leak. The leak was fixed with a blood patch. I learned very quickly what this disease can and would do to me and my family.  I was also learning as I was going through my adventure. 

Dr. Kim is and always will be my lifesaver. He educated me on this disease. He ask me during my first visit if I had seen any difference when taking the Diamox. My answer was "no."  I was told to stop taking it right away. We discussed my options and I decided to have an LP Shunt; the vessels in my brain were too small to do a VP Shunt. 

After my surgery was the best I ever felt in a long time.  But it was short lived. I collapsed at work. My wonderful LP shunt was infected. The shunt was surrounded by a bag of pus the size of a cantaloupe. I was admitted to the hospital in my city, but the hospital would not take out the shunt. They said they did not know enough about the  LP shunt. I laid in that hospital for two days. I only had IV fluids running; no antibiotics. By then I was put on five liters of O2. They didn't understand why I was getting worse. 

My family insisted that Dr. Kim be called, but they were told that Dr. Kim said he had no knowledge of me. My family was also told that I would not make it through  the night. By the grace of God; my mother insisted that I be transferred to the hospital where Dr.Kim practiced. They told her I would not make it to the next stoplight, let alone to Houston. Houston was 1 1/2 hours away. When I was loaded in the ambulance the medic told my mother, "We will get her there no matter what." The ride was bumpy. I remember my mother lying across my body the whole ride there. When we arrived, the medic looked at my mother and said, "She's here, but barely."  

Dr. Kim was called immediately. He said he was never contacted by the hospital in my city. The infection had reached my brain. I lost three weeks of my life. I do not remember anything from that point on. I normally don't celebrate my birthday or even pay attention to it. But I thank GOD for seeing that birthday in the hospital. At that time in my life my husband had been diagnosed with a rare type of Leukemia. I had four children at home: two stepdaughters and two children of my own. Their ages were 15 years, 5 years, 2 years, and 1 year old. I left the hospital with no shunt and many headaches. I had home health visit me. I had antibodies running through my port a cath. I had to see an Infectious Disease doctor while in the hospital and when I returned home. 

Six months later, I had another LP shunt put in. Life was bearable. Then my LP shunt stopped working nine months later. I had a revision four months later. My depression had gotten worse. I was fighting my illness and trying to be a supportive wife to my husband, helping him with his chemo and his recovery. I still had to be a mother to my four children. Homework and school projects were my way of life. I had two babies I was trying to teach to walk and talk. My five-year-old was starting school. In the midst of all of this, I was dealing with this illness that had me in pain that I would never wish on anyone. My mother and other family members helped me with the kids and housework when I could not get out of bed. And I still held a full time job. I would go to work, vomiting in between patients. Some days I would black out at work. But I still maintained.

In 2012, I was diagnosed with Chiari Malformation. Dr. Kim says it's because of my shunt pulling so much fluid. He had never had that happen before.  In 2013, I had Fossa Decompression surgery. To this date I suffer from chronic pain, depression, and IH. I hope I can help educate and be a support to someone suffering as I am. My oldest daughter graduated with honors and is attending UT of San Antonio. My husband is in remission and doing better health-wise than I am. 

It is said that GOD don't put no more on you than you can bear. HE must think I am SUPERWOMAN! Because I have borne it all and seen it all.