The angiogram ruled out a vascular lesion. I don't even know what to think about that. In some ways its a relief, because a vascular lesion would carry a constant threat of hemorrhage, and a growing vascular lesion would require treatment. But ruling out a vascular lesion puts some of the scarier options solidly on the table, and that's a little overwhelming if I really think about it. (So mostly I just don't think about it! Haha!)
After the last two tests, my docs were all leaning towards a vascular lesion, so we are pretty stunned that this is off the table. The neurologist performing the angiogram said the vessels in my brain are completely perfect, with no evidence of vascular malformation or any vascular abnormality at all. He said my vessels are "pristine." So a vascular lesion is completely out.
We are still waiting on the spinal tap results, hoping they will be in within the week. Hopefully that will give us some clues about what's these lesions could be.
Possibilities on the table are inflammatory lesion (like neurosarcoidosis), a tumor, an indolent lymphoma, or an autoimmune encephalopathy. And who knows what else. The characteristics of this lesion are unusual for all of these conditions. It doesn't look or act like a textbook case of anything.
The radiologist from Texas said, "Whatever this is, it is either extremely rare, or it is a rare manifestation of something more common." I think that pretty much sums up the situation. He also said,
"I would like to show [your scans] to a world-famous neuroradiologist. She may remember me from Harvard, and we both went to Stanford. She has written the main textbook for neuroradiology and was the president of the American Society of neuroradiology. She was at the armed forces Institute of pathology, where they saw very strange cases from all over the world. She is also LDS. She may have seen something like this before, and it is worth a try before you do any more invasive studies."
It's such a blessing to know someone with that connection, and so sweet of him to offer. There really are so many blessings along this crazy road. I'm praying something here will lead to answers. A diagnosis would be amazing. I'm so ready to move on to the solution phase of things. Thanks everyone for your love and prayers!
After the last two tests, my docs were all leaning towards a vascular lesion, so we are pretty stunned that this is off the table. The neurologist performing the angiogram said the vessels in my brain are completely perfect, with no evidence of vascular malformation or any vascular abnormality at all. He said my vessels are "pristine." So a vascular lesion is completely out.
We are still waiting on the spinal tap results, hoping they will be in within the week. Hopefully that will give us some clues about what's these lesions could be.
Possibilities on the table are inflammatory lesion (like neurosarcoidosis), a tumor, an indolent lymphoma, or an autoimmune encephalopathy. And who knows what else. The characteristics of this lesion are unusual for all of these conditions. It doesn't look or act like a textbook case of anything.
The radiologist from Texas said, "Whatever this is, it is either extremely rare, or it is a rare manifestation of something more common." I think that pretty much sums up the situation. He also said,
"I would like to show [your scans] to a world-famous neuroradiologist. She may remember me from Harvard, and we both went to Stanford. She has written the main textbook for neuroradiology and was the president of the American Society of neuroradiology. She was at the armed forces Institute of pathology, where they saw very strange cases from all over the world. She is also LDS. She may have seen something like this before, and it is worth a try before you do any more invasive studies."
It's such a blessing to know someone with that connection, and so sweet of him to offer. There really are so many blessings along this crazy road. I'm praying something here will lead to answers. A diagnosis would be amazing. I'm so ready to move on to the solution phase of things. Thanks everyone for your love and prayers!
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