Originally Posted by cait
I've read different views on VNS usage for people with sleep apnea.My daughter is 17 and nothing has helped her seizures-meds, diet and three stage craniotomy. She is disabled,nonverbal and low tone thru her abdominal/trunk area. She is given diastat every 5 days or so when her seizures are really bad- all types but grand mal- turning to generalized seizures.
She doesn't tolerate a C-PAP for the sleep apnea. We are going to have another sleep study done soon and then the VNS--her neuro doesn't seem concerned about her sleep apnea but I AM.
I am also worried about any side effects because she can't tell me how she feels and yet---if the VNS could help her, I hate to have my fears stand in the way of something that might help.
So the question is -anyone with a VNS who has sleep apnea- and how has it helped your seizure activity and your apnea?
[font="Comic Sans MS"][size="4"][color="Blue"]If you have Sleep Apnea, the VNS will make it worse. There are warnings placed in the Physician Manual
about this. Before I was implanted I had a sleep study done but it was 2 years after my VNS implant that my Apnea showed up. Mine is life threatening . My oxygen levels drop to less than 50% so not only do I have a CPAP at high settings I am also on oxygen. There are several members on my site who also have SA and VNS.
I am very concerned with implanting this device into those who are unable to communicate. Only about 1/3 of those implanted actually get a benifit from VNS. With your daughters' merid of medical issues, it may make matters worse for her. Since she cannot communicate, she won't be able to let you know if it's hurting or malfunctioning.
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