My daughter has a chiari 1 malformation and has had numerous surgeries this summer to get a working shunt to deal with pseudotumor cerebri (raised intracranial pressure) One of her big problems has been that her incisions reopen and leak fluid (CSF or ??)
I have been told she probably has EDS based on this and moderate joint hypermobility. Are there any precautions that can be taken to get the leaks to stop? She has an excellent neurosurgeon (David Frim in Chicago) so there are no problems with his competence.
We've been in Chicago for 2 months now trying to get everything to work right. We would really love to go home someday. Over Labor day the old chiari incision on her neck (last opened 7/29) and previously overstitched twice for leaks opened up and changed duraseal oozed out for a couple of weeks. A few hours after that was sealed up and we had permission to go home the abdominal incision from a shunt 8/29 opened up and leaked pus, then this weekend the lumbar incision from the same surgery started leaking CSF again. That one had leaked the previous weekend also and was oversewn then. If we can get everything sealed up and Cristina feeling well we can head to the airport.
If you have any ideas on what we can do to get home we would love to hear them. Thanks Kathy S
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