Thursday, June 19, 2014
Echocardiogram
Auggie recently had an echocardiogram that showed some improvement from two years ago. In other words, as he has grown, so has the valve and therefore the opening that lets blood flow to the lungs is bigger. The flaps that open and close are still a little slow and do not open all the way, but according to the cardiologist this should not impact his daily life in any way. Good news overall!
Posterior Fossa Decompression Surgery is set for August 8th
We had our third and final consultation with a neurosurgeon today and we were very impressed. It's hard deciding where to have surgery but we based our decision on what works best for our family time wise, reputation of the surgeon, overall gut feeling, and the fact that he already sees other doctors at that hospital. The pre-op appointment will be a few days before surgery and includes a consult with the anesthesiologist, a child life specialist and a quick MRI. We also have some blood draws to do before surgery.
Wednesday, June 4, 2014
Chiari malformation with syringomyelia
There has been a major development here. About 3 weeks ago Auggie slipped on wet concrete and hit his head hard. He seemed fine for a few days but then on day 5 his head looked swollen and he seemed really out of sorts. We had been in touch on the phone with the pediatrician but she had reassured us that as long as he wasn't vomiting we needn't worry. That all changed when we brought him in on day 5 - she told us to get him to Children's Hospital ASAP. A CT scan confimed a fracture and heavy bleeding above the skull as well as an epidural hematoma in the brain. He was checked in for observation and listed in serious condition - that night in the ICU was one of the hardest nights of my life - I didn't eat or sleep for 24 hours.
The next day an MRI showed that the bleeding had slowed BUT it also showed that he had a malformation in his brain - the back of the brain was herniated and pushing down into his spinal column - the technical term is chiari malformation. This malformation was an incidental finding and had been there all along - not since birth though - an MRI when he was 6 months did not show the malformation. In addition, the MRI showed that he has 2 large cysts in his spinal canal that have formed due to fluid getting backed up around the herniated cerebellar tonsils.
After consulting with the neurosurgeon we were told that the pressure that the herniated tonsils and the cysts put on the spine can lead to paralysis if left untreated. As it is, the malformation may be what is currently responsible for his difficulty with eating and drinking and his quick gag reflex that often leads to vomiting once he starts gagging. We are told that it is a good thing it was discovered now and not later when it could have caused irreversible spinal cord damage, but we are not excited about the looming brain surgery.
The surgery (a procedure known as posterior fossa decompression surgery) to correct this problem entails opening and cutting away a piece of the skull and vertebrae, opening the dura (duraplasty) and patching it to give the brain more room, and if needed shrinking the cerebellar tonsils by cauderizing them - that part of the brain we are told has no function (you would hope). Then after 4-6 hours of surgery he will be in the hospital for 3-5 days. The complications include infection and leaking of fluid from the patch - both potentially life threatening. The surgery itself does not address the cysts, but rather the cause of the cysts (the herniated cerebellar tonsils, which in his case push down 2 cm below the point where they should stop) The hope is that the cysts disappear after surgery as the flow of fluid becomes smoother around the back of the brain. An MRI to check this is done 6 months after surgery. If the cysts do not go away, then a second surgery is required to drain (shunt) the cysts - form what I have heard this operation is far more risky and complicated.
So far we have consulted with two neurosurgeons and we have a third appointment next week. So far they have both agreed that surgery can wait until August as he is not showing worsening symptoms at this time. To complicate the matter we have also found out that Auggie has some sort of clotting disorder and we are working with a hematologist to pinpoint it so that we can address it before surgery. He is currently taking vitamin k before we have his PTT levels tested again next week. I will be posting updates on this issue as we find out more....
The next day an MRI showed that the bleeding had slowed BUT it also showed that he had a malformation in his brain - the back of the brain was herniated and pushing down into his spinal column - the technical term is chiari malformation. This malformation was an incidental finding and had been there all along - not since birth though - an MRI when he was 6 months did not show the malformation. In addition, the MRI showed that he has 2 large cysts in his spinal canal that have formed due to fluid getting backed up around the herniated cerebellar tonsils.
After consulting with the neurosurgeon we were told that the pressure that the herniated tonsils and the cysts put on the spine can lead to paralysis if left untreated. As it is, the malformation may be what is currently responsible for his difficulty with eating and drinking and his quick gag reflex that often leads to vomiting once he starts gagging. We are told that it is a good thing it was discovered now and not later when it could have caused irreversible spinal cord damage, but we are not excited about the looming brain surgery.
The surgery (a procedure known as posterior fossa decompression surgery) to correct this problem entails opening and cutting away a piece of the skull and vertebrae, opening the dura (duraplasty) and patching it to give the brain more room, and if needed shrinking the cerebellar tonsils by cauderizing them - that part of the brain we are told has no function (you would hope). Then after 4-6 hours of surgery he will be in the hospital for 3-5 days. The complications include infection and leaking of fluid from the patch - both potentially life threatening. The surgery itself does not address the cysts, but rather the cause of the cysts (the herniated cerebellar tonsils, which in his case push down 2 cm below the point where they should stop) The hope is that the cysts disappear after surgery as the flow of fluid becomes smoother around the back of the brain. An MRI to check this is done 6 months after surgery. If the cysts do not go away, then a second surgery is required to drain (shunt) the cysts - form what I have heard this operation is far more risky and complicated.
So far we have consulted with two neurosurgeons and we have a third appointment next week. So far they have both agreed that surgery can wait until August as he is not showing worsening symptoms at this time. To complicate the matter we have also found out that Auggie has some sort of clotting disorder and we are working with a hematologist to pinpoint it so that we can address it before surgery. He is currently taking vitamin k before we have his PTT levels tested again next week. I will be posting updates on this issue as we find out more....
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