I spoke to Lizzie’s neurosurgeon’s office today, and here is what I found out:

1. He has a lot of experience with VNS as he has put them in.  Which means if Lizzie gets one, most likely, he will do it.  I breathe a sigh of relief here.

2. He had to read up on the shunt/VNS paradox after I called.  Then he found the same study I did, and came up with what may be a solution.

3. There is a newer programmable shunt valve that is less sensitive to magnets, and would be a solution to the shunt reset issue.

Unfortunately, this would mean:

1. Lizzie would have to have shunt surgery – and her working shunt would be disturbed, and her working valve replaced.  We would then have to wait at least a month to make sure Lizzie’s new valve and shunt are working properly before we could even consider the VNS placement.

2. More than one surgery – so multiple chances for infection.  Also twice the trauma for surgery itself.  And more time away from school and therapy.

3. More than one new device – so multiple chances for equipment failure which means refer to #2 above.

4. If the valve fails, or just doesn’t work for Lizzie for some reason it would mean another surgery to correct the problem.  And this would be a new problem we created, because there is no problem with the equipment she has now other than it is incompatible with the new device.

5. If the VNS doesn’t work for Lizzie, we would have done all this for nothing.

If, however, it worked, it would mean:

1. Less severe or less frequent seizures (or in some cases, no seizures at all (dare I dream?)).

2. Possibly less medications, so less side effects (which in Lizzie’s case seems to mean more abilities).

3. Fewer worries about seizures (although the worries will always be there).

4. An easier way to intervene when seizures do hit (a magnet swipe across her chest vs. a rectal medication that wipes her out).

This is a really tough decision.  We have to do an EEG and meet back with our neurologist at the end of next month, then I’ll know more.

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