VNS OR RNS Which is the better option please guys?

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I've Right Temporal Lobe epilepsy, not wanting surgery just now I'm opting for the VNS, but it has left me wonderinding if the RNS maybe the the better one of the two. Can anyone help?

Comments

A resection is the most

Submitted by Amy Jo on Fri, 2018-09-07 - 12:46

A resection is the most common way to address TLE, testing can give you an idea of how successful they think a resection could be. RNS requires a serious surgery and is great for those who cannot have a resection, VNS is also surgery. Both RNS/VNS have a lag time before it starts making a difference for people it helps (like over a year sometimes for VNS, some people do not get help with VNS, don't know how much info there is about RNS). How much testing (some of which may involve surgery) is involved before one can get RNS? Seems like they would need to check the focal areas well enough.

I had a resection of tissue

Submitted by birdman on Sun, 2018-09-09 - 21:30

I had a resection of tissue from my RTL in 1993. Fourteen months later seizures continued to happen from my right and left temporal lobes. In 1999 I gave VNS a try. Five years later the seizures continued, but VNS did change how quickly I recovered from them. I quit VNS. I'm a believer that VNS does help and has potential but it was a nuisance for me since I sing in choir and VNS caused vocal changes when it was on. Wearing the magnet to keep the device off while singing was not pleasant.I've been thinking about RNS since I first got word from Epilepsy Foundation that research was being done on the brain implant (mid 1990's?). Back then it seemed like an extreme an unnecessary treatment for me and I probably would never live to see it. Then sometime after the year 2005 I heard clinical studies were being done for RNS. Still I questioned if I needed such treatment for seizures which often only happened once every month or two. But it is for the same reason (low seizure frequency) that I do not want to take extra medications which hold so little potential for one who has failed more than a dozen already. More and more I like the idea of RNS since it is responsive and only provides treatment as needed. Also I hope to get a better understanding of the seizures I experience since RNS will record events which often get missed during EEG monitoring. I will be talking to my neurologist and neurosurgeon soon about RNS. I know that to place the leads for RNS the doctors need to determine seizure focus. The last I spoke to my neurologist he was not sure if EEG from 1994 (which gave very good evidence of left and right temporal activity) would be recent enough. My last EEG showed only RTL activity, but during that EEG I did not have a complex partial like I've been having at home.It was in 2017 that an epilepsy specialist recommended resection after the results of latest EEG only showed RTL activity. But I got a second opinion on this and found a specialist who agreed that RNS would be his first suggestion for me, and then if RNS failed he said resection was yet an option. I was amazed at how doctors at two different epilepsy centers so strongly differed in treatment recommendations. I think it would do you well to make sure your doctor knows your seizure history and what may have caused them to happen. Mine are "post-encephalitic" meaning they are the result of an infection in my brain (which I had at 6 months old). These are often bi-lateral and produce seizures from both sides of the brain and are more difficult to control. RNS vs VNS. You have a tough choice. I'm glad you are researching others' experience and looking to make a choice along with your doctor. I'm sorry if this confuses you more than it helps.

I had a resection of tissue from my RTL in 1993.  Fourteen months later seizures continued to happen from my right and left temporal lobes.  In 1999 I gave VNS a try.  Five years later the seizures continued, but VNS did change how quickly I recovered from them.  I quit VNS.  I'm a believer that VNS does help and has potential but it was a nuisance for me since I sing in choir and VNS caused vocal changes when it was on.  Wearing the magnet to keep the device off while singing was not pleasant.I've been thinking about RNS since I first got word from Epilepsy Foundation that research was being done on the brain implant (mid 1990's?).   Back then it seemed like an extreme an unnecessary treatment for me and I probably would never live to see it.  Then sometime after the year 2005 I heard clinical studies were being done for RNS.  Still I questioned if I needed such treatment for seizures which often only happened once every month or two.  But it is for the same reason (low seizure frequency) that I do not want to take extra medications which hold so little potential for one who has failed more than a dozen already.  More and more I like the idea of RNS since it is responsive and only provides treatment as needed.  Also I hope to get a better understanding of the seizures I experience since RNS will record events which often get missed during EEG monitoring.  I will be talking to my neurologist and neurosurgeon soon about RNS.  I know that to place the leads for RNS the doctors need to determine seizure focus.  The last I spoke to my neurologist he was not sure if EEG from 1994 (which gave very good evidence of left and right temporal activity) would be recent enough.  My last EEG showed only RTL activity, but during that EEG I did not have a complex partial like I've been having at home.It was in 2017 that an epilepsy specialist recommended resection after the results of latest EEG only showed RTL activity.  But I got a second opinion on this and found a specialist who agreed that RNS would be his first suggestion for me, and then if RNS failed he said resection was yet an option.  I was amazed at how doctors at two different epilepsy centers so strongly differed in treatment recommendations.  I think it would do you well to make sure your doctor knows your seizure history and what may have caused them to happen.  Mine are "post-encephalitic" meaning they are the result of an infection in my brain (which I had at 6 months old).  These are often bi-lateral and produce seizures from both sides of the brain and are more difficult to control.  RNS vs VNS.  You have a tough choice.  I'm glad you are researching others' experience and looking to make a choice along with your doctor.  I'm sorry if this confuses you more than it helps.  

I had a resection of tissue from my RTL in 1993. Fourteen months later seizures continued to happen from my right and left temporal lobes. In 1999 I gave VNS a try. Five years later the seizures continued, but VNS did change how quickly I recovered from them. I quit VNS. I'm a believer that VNS does help and has potential but it was a nuisance for me since I sing in choir and VNS caused vocal changes when it was on. Wearing the magnet to keep the device off while singing was not pleasant.I've been thinking about RNS since I first got word from Epilepsy Foundation that research was being done on the brain implant (mid 1990's?). Back then it seemed like an extreme an unnecessary treatment for me and I probably would never live to see it. Then sometime after the year 2005 I heard clinical studies were being done for RNS. Still I questioned if I needed such treatment for seizures which often only happened once every month or two. But it is for the same reason (low seizure frequency) that I do not want to take extra medications which hold so little potential for one who has failed more than a dozen already. More and more I like the idea of RNS since it is responsive and only provides treatment as needed. Also I hope to get a better understanding of the seizures I experience since RNS will record events which often get missed during EEG monitoring. I will be talking to my neurologist and neurosurgeon soon about RNS. I know that to place the leads for RNS the doctors need to determine seizure focus. The last I spoke to my neurologist he was not sure if EEG from 1994 (which gave very good evidence of left and right temporal activity) would be recent enough. My last EEG showed only RTL activity, but during that EEG I did not have a complex partial like I've been having at home.It was in 2017 that an epilepsy specialist recommended resection after the results of latest EEG only showed RTL activity. But I got a second opinion on this and found a specialist who agreed that RNS would be his first suggestion for me, and then if RNS failed he said resection was yet an option. I was amazed at how doctors at two different epilepsy centers so strongly differed in treatment recommendations. I think it would do you well to make sure your doctor knows your seizure history and what may have caused them to happen. Mine are "post-encephalitic" meaning they are the result of an infection in my brain (which I had at 6 months old). These are often bi-lateral and produce seizures from both sides of the brain and are more difficult to control. RNS vs VNS. You have a tough choice. I'm glad you are researching others' experience and looking to make a choice along with your doctor. I'm sorry if this confuses you more than it helps.