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s10sleeper

Epileptics to not get near enough funding for research compared to other!!!!!!

I recently had my RNS replacement done, which I am grateful for that they pick up costs that insurance won't. In finding these amounts out it really got me thinking, I belong to the Freemasons in Kansas, and we have donated 22 million to KU med research for cancer, I am going to have to bring this up at the meeting and with the grand lodge. There has to be a way to raise funde if we can come up with 22 million in a few years. If I continue as lodge secretary I may have a little push, especially because they had a few meeting where they had to find a sub since I was in surgery.

I would lve to see a 100 percent cure and less stigma,

So I will be speaking with my brethren about it

Comments

Thanks!

Great idea and thanks for all your help! Give the office a call if you want to talk about support of epilepsy research through here! The more the merrier!

It's great to have such motivated and passionate people!

Epi_help
Resource Specialist

Epileptics to not get near enough funding for research compared.

Hi There,

I'm in Ontario, Canada so I know our medical systems are different, but I do still agree that there does need to be more funding and support.   This question is more just out of curiousity, because it has taken me over a year to go through testing and come to the end of neurosurgery (I'm in recovery - 3 months seizure free).  As your RNS was looked into were you given the option to be a research case or a part of research studies.  My case was done at a teaching hospital - residents learned from my neurologist, from my surgeon and I signed consent on a few research projects that will help them learn how to diagnose the type of epilepsy I have even earlier.  Doctors do what they can with the health care systems in place.  Sometimes you gotta meet 'em in the middle.  There are actually ways to donate money to the hospital that has helped me, and I've told lots of my friends if you can ever afford it, that team does lots and they'd love the help on their research.

Robarts Research Institue works with LHSC as a team for all neurological things, not just epilepsy.  Epilepsy just happened to be my case, so that's the team of doctors that worked on me.

What I'm getting at is, since we're the ones diagonsed help with the research projects, as we can.

Re: Epileptics to not get near enough funding for research

Basically with mine, after running the tests to see if I was a candidate for resective surgery it turned out I wasn't as their thoughts were that I would lose most of my memory and would never be able to speak again. My epileptologist sat down with me and tried to explain the situation.

Basically I had been through so many different meds and med combinations, plus he noticed my seizures were getting progressively worse he told me about the clinical trial. I asked him about the VNS but he said that with my focal points it would not have much of a chance of working.

Mine was originally going to be done here in KS, but the depth electrode could not be done by the neurosurgeon here because it required a special type of equipment, so I had to fly out to Indianapolis for mine, which is a college hospital.

The comprehensive epilepsy center I go to has handled everything else, just not the initial surgery. But even the doctors where my surgery was done specialized in epilepsy, my doctor did not want anyone else to handle it unless they were specialized, as from the copies I have seen of letters he wrote to other doctors he has stated that my case has been one of the most difficult to treat. They have even asked me about checking on a second opinion once I get insurance, but they tell me that it has to be a level 4 center and not level 3, plus they prefer I go to one that has experience with the RNS.

The neurosurgeon in KS was able to do the replacement since they didn't have to replace the leads. My battery started going low about 7 months sooner than anticipated and they scheduled a date that they figured it would last until. Unfortunately it didn't, I noticed a major difference in the intensity of my seizures for that week before, so overall I think the RNS is great.