does anyone know if VNS will help with seizure control with EPM-1 aka Unverricht-Lundborg any advice would be great the doctors dont know. It is a rare disease not many people in the US have it so i was just wondering
Kyle

Hey ktino84

:Welcome:


Would you please be so kind as to explain that disorder. I had never heard of it and would like to know more. Thank you

This is what i was talking about well some of it i have pages of research but i thought i would start with this

An autosomal recessive condition characterized by recurrent myoclonic and generalized seizures, ATAXIA, slowly progressive intellectual deterioration, dysarthria, and intention tremor. Myoclonic seizures are severe and continuous, and tend to be triggered by movement, stress, and sensory stimuli. The age of onset is between 8 and 13 years,

With a progressive genitic diorder like this, I think your best bet is to call Cyberonics directly and talk to them. From what I do know of the VNS it works best with sudden onset seizure disorder diagnosed with in 5 years.

However, for some it is the last hope left. I have heard from parents who's child's quality of life has improve with very difficult cases.

I wish I could give you more information. Maybe someone else reading the board might have more of an answer than I do. :unsure:

We have had 2 patients with PME and implanted the VNS. There is no way to determine if this has slowed the progression or even helped - the PME are aggressive, resistant to treatment and decline is eminant. One of out PME pateints passed away last year, his mother said the VNS didn't help at all, but was thankful that is was trialed, otherwise she never would have known.

We have several other patients with PME and their paren's haven't opted for the VNS - however, as the disease progresses, they too may hope this may help. It' doesn't reduce the myoclonus and until more data is collected from other Epilepsy Centers, we won't know the percentages of those who have been helped.