Chiari Malformation II

On Thursday Trinity was seen by Dr. Gilmer. She checked her shunt and was very pleased with how it was pumping and how Trinity looked. This was also the appointment that Dr. Gilmer was supposed to review Trinity's MRI. After reviewing there were several areas of concern that were noticed, some of which were more urgent than others. The MRI showed the Chiari Malformation to be quite apparent and quite severe.

Just so you are understanding what Chiari Malformation II is here is a brief description of it from a book that we have. It is a difference in the structure of the brain involving the lower brainstem, upper spinal cord, and the lowermost portion of the cerebellum. About 85-90% of children with spina bifida have this malformation. Only a small percent of children, however, show symptoms and problems that eventually require surgical management. When the Chiari is present, the brainstem and cerebellum are pushed down and compression may occur due to lack of space. In addition, the fourth ventricle is elongated and enters the cervical area of the spinal cord. This may block the normal flow of CS fluid and increase the compression on the brainstem. It also results in increased intracranial (within the skull) pressure or displacement of CS fluid into cysts in the spinal cord. Some symptoms that Trinity has been showing is upper extremity weakness and she tends to gag when she is eating.

This would mean surgery right away. Due to Dr. Gilmer taking a two week vacation and already having a full surgery schedule, Trinity is tentatively scheduled for the 27th of Aug. The procedure consists of Dr. Gilmer taking a generous portion of Trinity's skull on the back side of her head where the skull meets the vertebrae. She says that it is important to take a large amount so the surgery will only have to be performed once. It is probable that as young as Trinity is her skull will partially grow back. This will relieve the pressure that is being applied on the stem of Trinity's brain, which is causing her spinal fluid to be restricted and nerves to be pinched. There is a certain amount of risk that is involved this surgery. Anytime a procedure is done so closely to the brain there is a risk of damage. There are also a number of large blood vessels that are located in this area and a blood transfusion is probable. There are things down the road that Trinity could face with having Chiari Malformation II, but most of them we will not know for sure until she gets older (walking, hearing, speech, etc...).

Secondly the MRI showed that Trinity has a tethered spine. When the surgery was performed to both close Trinity's spinal column and her skin on her back the two healed well, but as I understand it they grew together. It will not be until Trinity starts to grow and walk that we will be able to understand how this will effect her, or if it will at all.

Lastly, Dr. Gilmer can see where Trinity has scoliosis. She says that this is not uncommon at all with spina bifida children. She says that time will tell whether or not surgery will be needed to correct this problem also.

This is all a lot of information, but hopefully you understand what to be praying for. This is a lot to digest. When we think of all the risks and Trinity having to go through another surgery it makes us sick to our stomachs. When we found out that Trinity had spina bifida we didn't expect half of the things that we have faced in the past couple months. Sometimes I ask God "Why?". I will admit that the last couple days that question has been going through my mind a lot. I spent some time tonight going through some past posts and it pretty much brings me to tears. I can't believe all that Trinity has faced in her short life. I am really asking you to get on your knees and pray for our little girl. Pray that God would bring healing to her body and that if this surgery is what he wants for her that he would give Shannon and I some peace about it. Pray that Trinity would have a speedy recovery and that this would fix what needs to be fixed and not cause anymore damage. Shannon and I could really use your prayers also. It is a lot to have on your shoulders when you have to make decisions that involve your child's life. Please pray that we are making the right choices with Trinity.