IHGrayMatters.org exists to raise awareness and involve the community about issues involving childhood Intracranial Hypertension/pseudotumor cerebri.
June 13, 2005 this journey began...
It all started on a Friday night, Christian, Cameron and Daddy(Bob) were watching TV. Christian was covering one eye. When asked about it, he told Bob he was seeing two of everything. The next morning he had his eyes examined..
Saturday morning changed the rest of our lives..first panic when we were told that most likely Christian had a brain tumor, his optic nerves were dangerously swollen. We were to take him to the ER immediately! Christian was admitted to the hospital and various tests were done to rule out a list of horrid diagnosis. After the six days we left without a diagnosis and the research began, as well as, the anxiety that Christian was really ill and no one knew what to do.. The first six weeks involved doing lots of research and talking to many doctors from around the country. We went to Emory in Atlanta and Christian was diagnosis at the first visit with Pseudotumor Cerebri (excessive pressure on the brain, acts like a brain tumor with out a mass, risk of blindness). We started medication therapy and made a few trips to Emory to the end of the year. In February 2006, we had tried a myrid of medications, holistic approaches and multipal LP's (spinal taps) to try to relieve the pressure. To no avail, Christian was still suffering and in pain most days, all day to some degree. He had missed over 80 days of school so far that school year, I pulled him out of Savannah Christian and home schooled him. On March 10th Christian had his first brain surgery, a VP shunt. At first this seemed to be the answer, then 6 weeks later, he was in surgery again, for a failed shunt. The second shunt seemed to be functioning much better, he was symptom free for 7 weeks! WooHoo! We thought this was the answer...July came and the shunt stopped working, we disagreed with the doctors for the following four months and in December he was so sick, he was vomiting blood and the pressure was so high he was loosing his vision. The VP shuntwas completely blocked & was revised and a new shunt put in 12/8 on 12/17 the new VP shunt failed and a LP shunt was put in. In 2007, Christian struggled on and off with a total of having 15 brain and spine surgeries, as well as, a total of 23 LP's (spinal taps). We gave the disease back to God in July 2007 and removed his shunt, (he had another spinal leak). We felt we needed to let his fragile body heal and rest; 15 surgeries in 18 months was way too many for a child, especially when we had continue failures. In October 2006 and June 2008, I attended the IHRF (Intracranial Hypertention Research Foundation) to talk with patients, parents and the doctors that treat them from around the country. I met the team from OSU and found out they have a pocket of child IH cases they treat. Alot of their patients were also as complex as Christian was. In September 2008, we made the trek to Ohio, saw the IH team of specialists and brainstormed on many options. It was decided that a bilateral subtemporal decompression was necessary to allow his brain to relax from the continued high pressure. The hope to have the ventricals open up to be able to shunt again, as well as, pull up the tonsils that were now a slight Chari Malformation. On 9/11 and 9/15 the surgery was done. Christian struggled while his brain and body adjusted to have missing skull. His symptoms did not improve. On 10/13 a MRI and LP were done. His opening pressure was still very high. The need to return to OSU and Nationwide Children's was needed for follow up. We arrived back on 11/18 and saw the team, it is now imminate that he has brain surgery and have a VP shunt placed to releave the pressure. The surgery is scheduled for 12/1...
Read more at Christian's Blog
Anna Marie Dingess was diagnosed with Psuedo Tumor Cerebri on September 15, 2006. She is 1 of 29 children in the World that have been diagnosed with this disorder. This is a fluid tumor around spinal cord and brain. Since her diagnosis she has two LP shunts put in. The LP shunt relieves the fluid into her stomach. Anna has been seen by the outstanding doctors at Emory and at this point, they have finally said that their may not be much that they can do. The Pseudotumor may have also damaged her Pituitary Gland thus meaning she may not grow anymore.
In order to help Anna fight this disorder, Anna and her mom Joy Dingess, will be attending Puesdo Tumor Cerebri Conference in Houston, Texas in June. Also, they will start meeting with a team of researchers in Ohio, in July. They will be making multiple trips this year to Ohio. They may also have to go to Houston for brain surgery to help her grow.
You can read more at Anna's Blog