It was another very difficult day today. Lots of tears. The grief process is running its course.
I don't have any new news to report, but I did want to write and clear a few things up for those of you who are interested in educating yourself about what exactly is going on with James. It will be helpful for me, when we come home, if our friends and family have educated themselves a little bit, so that I don't have to explain everything from scratch a million times. I don't mind answering questions, but I do sometimes get overwhelmed at the weight of it all.
I said in the last post that the doctors can't find any direct cause for James' recent loss of function by looking at the MRI. That is only partly true. I wanted to clarify that a little bit.. Basically, they think that the cause is a vulnerable and weakened spinal cord that is not getting normal spinal fluid flow around it, and the cells in the spinal cord begin to die. In the past, when James has had surgeries to drain a cyst outside the spinal cord (but right next to it), the thought was that the cyst was putting pressure on the nerves, and if we drain the cyst, his function should improve. This time the cysts are not in an area that should be affecting the arms, and that is why they think that it is the spinal cord itself that is damaged -- so there is not a clear-cut surgical solution to the problem.
James has what is called a syrinx - which is a cyst that forms inside the spinal cord. So, the diagnosis is called "syringomyelia" and you can read about it here: https://health.google.com/health/ref/Syringomyelia -
here: http://www.healthnewsflash.com/conditions/syringomyelia.php --
and here: http://www.merck.com/mmhe/sec06/ch093/ch093e.html
I'll keep you posted as we hear more. Dr. Gupta and his colleagues have a round-table discussion every Tuesday morning, and if they can't all get together to discuss James' case tomorrow, they will definitely discuss it at that meeting on Tuesday.
-Lynae
I don't have any new news to report, but I did want to write and clear a few things up for those of you who are interested in educating yourself about what exactly is going on with James. It will be helpful for me, when we come home, if our friends and family have educated themselves a little bit, so that I don't have to explain everything from scratch a million times. I don't mind answering questions, but I do sometimes get overwhelmed at the weight of it all.
I said in the last post that the doctors can't find any direct cause for James' recent loss of function by looking at the MRI. That is only partly true. I wanted to clarify that a little bit.. Basically, they think that the cause is a vulnerable and weakened spinal cord that is not getting normal spinal fluid flow around it, and the cells in the spinal cord begin to die. In the past, when James has had surgeries to drain a cyst outside the spinal cord (but right next to it), the thought was that the cyst was putting pressure on the nerves, and if we drain the cyst, his function should improve. This time the cysts are not in an area that should be affecting the arms, and that is why they think that it is the spinal cord itself that is damaged -- so there is not a clear-cut surgical solution to the problem.
James has what is called a syrinx - which is a cyst that forms inside the spinal cord. So, the diagnosis is called "syringomyelia" and you can read about it here: https://health.google.com/health/ref/Syringomyelia -
here: http://www.healthnewsflash.com/conditions/syringomyelia.php --
and here: http://www.merck.com/mmhe/sec06/ch093/ch093e.html
I'll keep you posted as we hear more. Dr. Gupta and his colleagues have a round-table discussion every Tuesday morning, and if they can't all get together to discuss James' case tomorrow, they will definitely discuss it at that meeting on Tuesday.
-Lynae
1 comment:
Dear Lynae,
We will continue to pray for sweet James and each of you! We pray the Lord will give you the comfort you need during this difficult time We are praying for His wisdom in the team making decisions about James. Lord bless and keep you in His loving arms!
Susan Check
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