We finally heard from Terrys neurosurgeon. Doc said he got pretty good images of her spine and he isnt convinced that she has a tethered cord. We were not expecting for him to have other concerns. He said he wants to see us at his office (scheduled for Monday) to discuss something we werent expecting. He told Terrys dad on the phone that he wants to discuss possibly going in lower at her neck and up into her brain. He wants to explain this with detail on Monday.We of course did not want to here this. Her last surgery was the scariest one we have experienced. The feeling of not being able to fix something for your child is the worst feeling ever. And I hate it! So, we now wait until Monday to find out what the next treatment is. We do know that the syrinx (the cyst) in Terrys spinal cord is not going down and it is the size of her entire spinal cord. That has remained the same. What has changed, is her tonsils (the ones in the brain) at her cerebellum are lower, and she has crowding where it droops down into her spine and they are peg like. The last time doc did surgery, that was an area that he would not go to because there was sooo much scarred tissue and it would be risky which is the reason why he had to put a shunt in her brain. Her head had to have somewhere for csf to flow. At the time he said the only other option would be to remove her entire cerebellum and thats never been done. This is how bad it looked. Im not sure what he has seen but Monday we should have our answers. Our hearts are broken for our Tear Bear. The waiting for details is not the best feeling either. We are on our way to Vegas to our time share for a few days to have a little get away. Terry doesnt know complete details yet as we want her to have a great time without worry. Monday will come quick enough....
Posted on: Wed, 07 Jan 2015 03:05:11 +0000