Help NIH Prevent Closing an Important Epilepsy Study

[I&R Group]

Epilepsy surgery can be an effective therapy for some people whose seizures cannot be controlled by anticonvulsant medications. A new clinical trial is testing whether a minimally-invasive approach called radiosurgery is as effective as standard open surgery at reducing or eliminating seizures in patients with medically refractory partial epilepsy.  Radiosurgery is a radiation procedure already in use to treat tumors and other abnormalities of the brain.

The Gamma Knife® radiosurgery instrument used in this study uses tightly focused beams of radiation to target the seizure focus, rather than removing it with open surgery. The ROSE Trial (Radiosurgery or Open Surgery for Epilepsy), sponsored by the National Institutes of Health and Elekta, the company that manufactures the Gamma Knife, is designed to compare the two different surgical procedures on outcomes including seizure frequency, language impairment (sometimes caused by surgery), cost of the procedures, and effects on quality of life.

NIH might have to close the study before it is complete if patient enrollment does not increase within the next few months. The ROSE Trial is being conducted in major epilepsy centers across the U.S. and Canada. For more information about this trial and to locate an enrolling center near you please visit clinicaltrials.gov using this link http://www.clinicaltrials.gov/ct2/show/NCT00860145?term=radiosurger... or visit the ROSE study website at http://epilepsysurgery-rosetrial.com/

Contact: Nicholas Barbaro 415-953-3557

 

Thanks,

Epilepsy Foundation

Epilepsy Resource Center

1-800-332-1000

[Southie]

Posted it on FB and tweeted it!

 

:-D

 

[I&R Group]

Hi Southie,

The Epilepsy Foundation’s Epilepsy Resource Center would like to thank you for your time and dedication to the epilepsy community.  We sincerely appreciate you and all that you do in keeping the community informed and for your continued support of the Epilepsy Foundation.

 Cordially,

Gigi Jones

Information Specialist

The Epilepsy Resource Center

 

Don't forget to check out the latest Epilepsy Foundation community outreach programs:

Take Charge:  http://www.takechargeteens.org/

Go EYC: http://www.goeyc.org/

School Nurse Online Training: http://www.nasn.org/Default.aspx?tabid=120

Epilepsy and Seizure Response Training for Law Enforcement: http://www.epilepsyfoundation.org/firstresponders/index.cfm

 

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[Andrew Strasser]

Bio and Neuro feedback are the most important frequencies on Earth remember that Doctors as I have called my Nuclear Physcists for help.

 

General Andrew F. Strasser

 

Please have all epileptics check in.  If you have not had an A.E.E.G. get one...  This is vital to our chances of curing it...

[Andrew Strasser]

Digitrace invented an A.E.E.G. in 1985....  I took my first A.E.E.G. when I was 5 which was 1984.  Please this is a vital mission.  We must have this to further our country...

[Andrew Strasser]

I do not believe in surgery I believe it can be fixed very easily... though it will take some time to roll out...  we hope that my yesterday is yesterday as usual for all of you.....

[Cassidy Waggoner]

I was offered to have this surgery trial by my neuro - I didnt fit the qualifications - Think it was cuz of multiple lesions or something, but it did have a high risk of death! So I was glad. Dont know if I want to promote this to comtinue?

 

[Nightowl]

Here's info. about the surgery from Epilepsy.com/Professionals

I had a temporal lobe resection done 10 yrs. ago, and if I was making the choice today, I'd prefer to go with the regular surgery, rather than a gamma knife. The surgeon removed scar tissue and my left hippocampus, which were the main causes of my seizures. My neuro. got a good picture of my mesial temporal sclerosis with the MRI. I didn't need to have electrodes implanted for surgery, but it sounds like that's more often done before gamma knife surgery. It's possible that those implanted electrodes can cause more harm than good. All patients experienced a transient increase in their seizures after the gamma knife surgery, before there was a decrease. Usually took a year before there was a decrease.

After reading information, that gamma knife surgery has more side effects than open brain surgery, I would not be willing to give it a try.

[Melissa Smith]

I had hippocampal sclerosis and my surgeon resectioned my hippocampus and removed my left lateral temporal. Commonly known as Lobectomy and is preformed using suction techinques.