*~Tina~* Posted October 11, 2012 Share Posted October 11, 2012 We are considering this surgery for our dd with a seizure disorder and were wondering if anyone has experience with this or thoughts for us to consider? I'm not thrilled about it (or am scared to death rather)...yet am not sure what other options we have remaining. Medicine has not helped and in fact many make them worse. We have been told this device only has a 50% success rate at "reducing" seizures not eliminating...and to me the surgery, device and potential side effects seem like a significant risk considering the success rate. Any information you can share or website you can link me to that would help us investigate this option further would be greatly appreciated. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted October 11, 2012 Share Posted October 11, 2012 I know very little about the VNS. Just wondering, have you had a functional PET scan done where they can see the part of the brain that is causing the problems? My girls had one to pinpoint (if needed) exact course of surgery, etc. In our case it wasn't helpful but I know that for some kids it can be helpful in deciding courses of treatment. Sorry you are going through this. Mine have seizures but are OK on meds. Quote Link to comment Share on other sites More sharing options...
*~Tina~* Posted October 11, 2012 Author Share Posted October 11, 2012 We had extensive testing at the Cleveland Clinic in 2009...they could not identify a focal point, thus she was not a candidate for surgery. I wish she would have been though because that seem more hopeful than having a foreign device implanted :001_unsure: I just hate the whole thought of this thing. I also hate watching her suffer with seizures and feeling so helpless. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted October 11, 2012 Share Posted October 11, 2012 Would redoing the test show anything different? Just asking as technology has improved in a few years. Have you tried a very low carb, high fat diet? I dont' know if it would help in your case but our neurologist offered that as an option for us. It is not quite the ketogenic but similar to an Atkins diet. Lots of fats, coconut oil, etc. and very low carbs. We opted not to go that way (I do give the girls lots of fats and sorta cut back on carbs) as it is SOOO hard to introduce to teenages when the meds are working. Just throwing out ideas, not trying to question what you have done. These decisions are so tough and there are no clear cut answers. Quote Link to comment Share on other sites More sharing options...
*~Tina~* Posted October 11, 2012 Author Share Posted October 11, 2012 We tried the full ketogenic diet...no results. Also been to another hospital for a consult...no help. We've tried so many med's that have not controlled her seizures and several of them made them worse. Onfi was a recent "new" one that landed her in the hospital for 3 days. Now we have circled back to the first one we ever tried - Trileptal...this time in conjunction with Zonegran...to no avail. She is having horrible seizures that take the life of her. 3 days last week and all day yesterday she was in bed...knocked out from the seizures and PRN meds. She loses vision during seizures, sometimes bladder control...it's awful and my heart is so heavy and sad that we can't find any way to help her. We considered the VNS last year, but opted to hold off. Now we are considering it again and she seems convinced she wants to try it, but I am sick about it. Quote Link to comment Share on other sites More sharing options...
Kebo Posted October 11, 2012 Share Posted October 11, 2012 I hesitate to post, because I don't have any first-hand knowledge.....but recently I spoke to someone who does neurofeedback, and he said that he uses it regularly with good success for seizures. It might be another avenue worth exploring. Sorry, I don't have any input on the VNS. Quote Link to comment Share on other sites More sharing options...
Ali in OR Posted October 11, 2012 Share Posted October 11, 2012 My dd has intractable seizures--meds help but don't completely eliminate them. Dd has a classmate who had a VNS put in last winter. I talked to the mom a little about it last spring. I know she was very excited about it. She liked that they could stop a seizure just by waving something over the implant I think. I know that they spend a long time bringing it up to speed so to speak. I think it was going to be months to a year before it was up to full power. Several months after the procedure her parents were still very optimistic about it. Quote Link to comment Share on other sites More sharing options...
*~Tina~* Posted October 12, 2012 Author Share Posted October 12, 2012 Thank you all for the input! I need all the help I can get in making this decision. I had so much hope for meds :sad: Quote Link to comment Share on other sites More sharing options...
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