Thursday, November 3, 2011

Wednesday, November 2nd 6pm

Update: Today has been a pretty tough day for Mandy. She's been very nauseated again and we haven't been able to get on top of it completely. There is encouraging progress though. She got up with occupational therapy and was able to walk 12 steps (with a walker, a safety belt and lots of assistance) She's now in league with Laney! (Micaela's baby who just turned one and can take 12 steps too! LOL) It unfortunately made her more nauseous though and life in the hospital doesn't allow any breaks.A healthy person would be wiped out! The best news is that she is now able to raise each leg about 6 inches off the bed by herself!!!!. And she can bend her knees. She hasn't been able to do that since she arrived here. Her arms are pretty normal now and she uses both equally. She had new studies today. An EEG (electroencephalogram) and other electrical studies that identify how her nerves are transmitting. It took about 3 of hours and I couldn't be with her. She said it was pretty interesting. They attached her to a bunch of electrodes and had her watch a monitor while they stimulated different nerves looking for any "disconnects" It's exhausting. And they're doing more tomorrow. The techs saw me in the hall and were so amazed that Mandy was so cheerful and cooperative even when she was feeling so lousy. We're now waiting for a different kind of MRI contrast that a Neuroradiologist recommended. 

We spoke to the Neurosurgeon last night. He was very kind and informative. Highlights? He agrees that the 2 most likely causes are MS or lymphoma. Her lesion is on the left side of her brain. The left side controls the functions of the right side of the body. It should ONLY be affecting the right side not both sides though. So the fact that both sides are involved is another puzzle piece and leads him to suspect it's something else. He said that lymphoma usually has defined borders and Mandy's lesion does not have defined borders. He was cautiously optimistic that it isn't lymphoma but we can't yet rule it out. The lesion is in the motor strip so removing it surgically would be out of the question because the risk of paralysis is too high. It would be treated with steroids and radiation (No chemo.) He says its usually a very successful treatment and the lymphoma just "melts away." The interesting thing is that she's currently on steroids. If we end up doing a biopsy (which we will only do if we can't diagnose this any other way because it's risky too) he will take her off steroids for 5 days before he does it. The steroids would make the biopsy inaccurate. (False negative) There are currently no cancer cells in her cerebral spinal fluid but he said that doesn't mean anything b/c a lymphoma is basically encapsulated. He also agrees it could be MS. The CSF tests we're still waiting on will hopefully give us more clues. This isn't a typical presentation for MS either though. It's not usually this dramatic and they usually see more than one lesion on the brain.

I talked to Mandy's original infectious disease doctor today. He reviewed everything and said that everything is clear from an infectious disease point of view. (They're even questioning the Rocky Mountain Fever diagnosis and are sending out samples of blood to be retested.) He said this is now completely in the neurologist's court because everything else is normal and unremarkable. The mystery continues. I can't help but think that her prolonged sickness has now led us to pay attention to something even more concerning which in the end will be a blessing. Early diagnosis is always better.

Thank you your your prayers, for fasting today and for keeping Mandy in your thoughts. She has loved hearing from so many people and continues to be so grateful for your love and concern. Her patience in suffering is unbelievable. I'm truly in awe.

Sorry this is so long. I tried to consolidate as much as possible.

Love, Tami

1 comment:

  1. Thank you for this blog and for all the details! She is always on my mind!

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