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My daughter at the age of 17 years old had an AVM that ruptured three years ago on the left side of her brain. This caused issues with her right side movement. We keep on getting recommended to use Bioness for her leg/drop foot as well as for her hand. The problem is at $5,000 just for the hand the insurance will not pay because it is deemed "experimental". I have two questions: do they work? Do you know of any grants that may help pay for them?
Thank you in advanced!
AHAASAKatie, June 28, 2018 9:06am EST
Thank you for this question. I am taking some time to do a bit of research on this topic so I can help give you more information to consider. Please look for an AHA/ASA response in the next day or so. Best Katie
AHAASAKatie, June 28, 2018 12:24pm EST
Good afternoon, thank you so much for your patience. This is what I was able to find out. A Bioness is a NME's (neuromuscular electrical stimulation) device and is used to send electrical stimulation to a part of the body that is affected by stroke. It is like a TENS (Transcutaneous electrical nerve stimulation) device. These devices have been considered for several post-stroke rehab issues such as shoulder pain, shoulder subluxation, swallowing, spasticity, and foot drop. In the AHA Rehab Guidelines most of the recommendations for this treatment fall in the Class IIa (moderate scientific evidence to support the treatment) or Class IIb (weaker scientific evidence to support the treatment) range. This means that the evidence is not so strong to say that the treatment should be used. But because there is some evidence to support, we discuss that it is reasonable or might be reasonable to use the treatment.
This is something that should be discussed with your doctor or rehab specialist.
I also have this patient story that I thought you might enjoy reading as well Coming Home: Profiles of Adult Children Who've Depended on Parents After Stroke.
Please let me know what else we can do for you at this time. Best Katie
Vegas, July 2, 2018 3:39pm EST
I don't know about Bioness but think a tool for the family is counseling. The stroke connection website has some 1800 #'s if you need to talk and lil better caregiver info. The whole thing can be overwhelming at times and strongly recommend talking fo counselar for the whole family.
Stroke abilities and talents can come in different forms, please watch Accidental Genious by great big story on Youtube, very interesting.
Employment can be an issue in the future and suggest thinking of a home based family business if that is an option.
Would love your view on the disabled union idea in my survivor story. Blue baby & disabled unuion.
cookiesdad, September 4, 2018 11:50am EST
I can tell you as a survivor that sometimes the family thinks and considers, then forget because it is normal for you to do IT.
Then when IT doesn't get done, the survivor becomes the bad person.
The family needs the understanding and support from people as much as the survivor!