3rd opinion

Today, we had a third opinion with a french heart surgeon. He re-affirmed that Post Pump Chorea is very rare and that the fact that there is not visible lesion in the MRI is positive. He also mentioned that if it was post pump chorea, it should have been visible as soon as the anesthesia wears off. In the case of Clarisse, she head a couple of great days after the surgery when we was able to walk around the third floor, look at the paintings and talk. We are going to meet with Clarisse’s Neurologist at Stanford on July 27th. Will try to get confirmation from him on whether or not PPC should have been visible from the first days or if it can somehow be dormant and appear at anytime within 2 weeks.


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3 Responses to 3rd opinion

  1. caroline says:

    wow, so many differing opinions. makes it so much more confusing I bet. But this one seems to be a more optimistic view too, except I don’t know what his theory is. Does he have one? As you’ve said so many times this is testing our patience and we need to have faith and just take it one day at a time and remain open to any sudden positive change that can occur at any time. I have been reading a lot about it too and nothing seems to be conclusive, no clarity really. I love you all.

  2. Albert says:

    Edwin, Debbie did some research via her company site and found some articles. The 1988 article may seem old but there were 5 children involved in the case study. The 2010 article has a large list of references that may have more information. I’ve mailed both of them to your devhd account. Please let us know if there’s more that we could do to help. Hang in there.

  3. Thank you very much Albert. I had not seen the 1988 article yet. It has a lot of details in it. The onset information in particularly interesting. We are starting week #8. Clarisse does not suffer yet of the ophtalmoplegia. The last couple of weeks have been hard because we have lost a lot of ground in terms of muscle tone but I am hoping that this week we are hitting a plateau. Thanks for the attention. Much appreciated.

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