In April 2010, I was diagnosed with Pseudotumor Cerebri. You're probably thinking, "What on earth is that?" Since the word "pseudo" means false, I don't actually have a tumor and "cerebri" means brain. My body is producing too much cerebrospinal fluid (CSF) and it puts a lot of pressure on my brain which can eventually lead to blindness if left untreated.
When I was first diagnosed, I had the "worst headache of my life" and in order to relieve the pressure, I had to have a lumbar puncture, also called a spinal tap. For those of you who do not know what a spinal tap is, it's where the Doctor has to numb the lower area of the back where the long needle will be inserted into the spinal canal. The needle is hollow and while it is in the spinal canal, spinal fluid is drained to relieve pressure on the brain. For me, this procedure relieved the pain for 2-3 days. If I was lucky, it could be a week.
My opening "pressure" was 38, which I understand is very high. I was immediately referred to Dr. Stephen Katz here in Columbus, Ohio for an eye exam. Upon the exam, Dr. Katz noticed my optic nerves were swollen. If this condition were left untreated, it could eventually lead to blindness. For the next 10 months I had more spinal taps than I can count and the Emergency Room visits were constant, sometimes three times in one week. In fact, I was on a first-name basis with the Doctors and Nurses. Honestly, it was the worst time of my life! I literally could NOT function. I was scared and extremely frustrated!
I had the most severe headaches imaginable that could not be relieved by Tylenol or Excedrin. Dark, quiet rooms didn't even help. My vision was gradually growing more blurry. I also struggled with doubled vision along with "ringing" and "swooshing" noises in my ears. I cried most of the time. I felt like I was losing my mind! Some people said, "Get over it. It's just a headache," In the ER, a nurse practitioner actually said, "There is nothing wrong with you!" I cried so hard, I was embarrassing myself. At that moment I remembered Dr. Katz telling me not everyone understands pseudotumor headaches or how to treat them.
Dr. Katz, including his staff, was ALWAYS there for me! He kept trying different medications and dosages to relieve my headaches. When he finally found a medication and dosage that worked, it interfered with another one of my medicines and I could not longer take the prescribed dosage. As a result, Dr. Katz referred me to Dr. John McGregor, a Neurosurgeon, to implant a shunt into my brain.
On January 31, 2011, I finally had my shunt implanted. I was so desperate I didn't care what the doctors had to do to relieve the pain. I must admit, it was the most stressful surgery I've ever had. After all, it was my brain that was being operated on. Then there was a chance it may not have the expected results.
Dr. McGregor and his Nurse Practitioner, Susan Bell did an excellent job explaining the procedure in detail and why a ventriculoperitoneal shunt (also called VP shunt) would work best for me. They both spent as much time with me that was needed until all of my questions were answered. Even though I was still scared, they put my at ease reassuring me I was in good hands and I was going to be okay.
The day of the surgery, I can remember thanking God for putting Dr. Katz and Dr McGregor in my life. I prayed and asked God to guide the hands of the surgeon, Dr. McGregor, and that I would have a speedy recovery without any complications.
The procedure entailed placing a small catheter, or small tube, in the ventricle area of my brain in order to drain excess fluid (CSF). Ventricles are are large pockets or cavities where the CSF collects. Then a small device was implanted just under the skin of my head that regulates how much fluid will drain. A longer catheter, that is attached to the shunt, was then tunneled under my skin behind my right ear, down the middle of my chest, ending on the right side of my abdomen. The fluid drains into the peritoneal cavity, which is the "hollow" area in between the organs of the abdomen where the CSF is reabsorbed.
Once I returned to my hospital room and opened my eyes, there were many people standing around me. The first thing they asked me was how I felt. I immediately noticed complete relief from the pseudotumor symptoms. The only pain I felt was mild at the incision sites. Also, pain control medications made me feel very comfortable during this process. I can remember Dr. McGregor telling me the procedure went well without any complications and he anticipated a great result. I can also remember many nurses telling me that I did better than most patients who have this procedure. I believe this was a direct result to the superior talent of Dr. McGregor and the fact my Heavenly Father was watching over me and guiding the surgeon's hands.
My hospital stay consisted of 7 days. Three of those days I was admitted prior to the surgery for pain control due to the headaches being so severe. About 2 weeks after the surgery I wanted to start doing the things I used to do before the surgery. The hardest part for me was sitting still long enough to allow my body to heal.
I want to thank Dr. Katz and his staff, Dr. McGregor and Sue, my family and children for their support and for my church family (Faith Life Church) for keeping me in their prayers. I have my life my life back now and I feel great!
Last Friday I had my follow-up appointment with Dr. McGregor and everything is functioning and healing incredibly well! I never had any problems of any kind, except when I wanted to be over active, no infections or drainage.
Today I had my follow-up appointment with Dr. Katz. When he examined my eyes, he found no swelling of the optic nerves and my eye pressure was normal. Therefore, I am no longer at risk of losing my vision. THANK YOU JESUS!
Dr. Katz also asked me if I would like to be a patient representative at a pseudotumor conference at Children's Hospital due to the outstanding results that were achieved. Even beyond this conference, I would love to help people through this very stressful "process". I can offer a lot of strength, encouragement and knowledge.
Please leave me a comment regarding this article. I would love to know what you have to say. Please refer others to this blog, especially this article if they are suffering from pseudotumor headaches.
Below I have added some pictures to help demonstrate what I am trying to explain.