Tom was finally discharged last Thurday evening. The doctors determined that there was no reason to keep him in the hospital except that they were (and still are) worried about his instability on his feet. They actually kept him in the hospital a few days more than expected for that reason alone.
Anyway, they are somewhat baffled by his neurological problems. Here's the rundown of what has happened in the last two weeks:
* He had a major seizure and was admitted to the hospital
* A CT scan showed nothing (of course, it's pretty wimpy compared to an MRI)
* An MRI showed white matter lesions
* Cerebral fluid was extracted from his head, and showed nothing of concern, such as cancerous cells
* A spinal tap was performed in his lower back, which also showed nothing of concern
* A second MRI was done which showed no increase in the amount of white matter lesions
* They were going to perform a brain biopsy but cancelled it because it is too risky and they felt it to be unnecessary at this time (it hasn't been ruled out though).
We have seen so many doctors lately including two from the bone marrow transplant team. The doctor that was assigned to Tom after he was accepted for the transplant procedure last May, has concluded that Tom may have a very rare condition called CNS-GVHD. This stands for central nervous system - graft-versus-host-disease. As you may recall, GVHD is fairly common with transplant recipients; this occurs when either the donor's cells fight the recipient's body, or vice versa.
CNS-GVHD affects the brain. There is little information about it. The doctors have seen only a few patients with this. It is very difficult to determine if, in fact a person does have CNS-GVHD, and that is why the doctors are reluctant to assign this diagnosis to Tom. They are not absolutely certain. From the research I've done (verrrrry little info available) Tom does share some of the symptoms of patients with CNS-GVHD - white matter lesions, seizure, altered memory.
Let me know if you find any more info: lisa5369@gmail.com. Thank you.
2 comments:
I'm on it! One more class meeting tomorrow night and I can turn my attentions full force to researching this CNS-GVHD. I will digging up whatever I can find, you can count on it.
Love ya,
Elise
Hi Lisa,
Just stumbeld across your blog as it looks like my husband Graham too has GVHd of his CNS. He is being admitted for more tests tomorrow. How is Tom getting on? Have they clarified his situation?
Sam
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