Surgery Vs. Vagus Nerve Implant

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shake&bake
New Member


Date Joined Jun 2004
Total Posts : 2
   Posted 6/17/2004 5:27 PM (GMT -7)   
Hi,
I was diagnosed with epilepsy at the age of fourteen, I have both Gran &Petit Mal seizures.  I used to be on Depakote but while I was seizure free for long periods, the side effects were worse than the seizures.  I am currently on a combo of Keppra,Lamictal and Dilantin.  Unfortunately in the last six months I have been experiencing break through seizures, I have completed most of the pre-surgical testing (I still have the Inter-cranial monitoring part left).  What I would like to know is what types of results has anyone had with either method.  I have Mesial Temporal Sclerosis, I have been told that this is a very common cause of epilepsy in women.  I would like to know from people who have had the implant some of the side effects and its effectivness, and from those who have had the surgery: recovery time, side effects (memory loss, blindness,etc.) that you may have experienced; and have you had a reoccurance in your seizures since your surgery or implant.  I know thats alot of questions to answer but I am desperate for some firsthand experience, I am entering my last year of college and if I am going to have either procedure I need to do it before I am off of my parents insurance.
                                              Thank You all, I'm desperate

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 6/18/2004 1:53 PM (GMT -7)   
I do not have epilepsy myself, I am the mother of 2 who do, however. Some neuros will not do the VNS unless you are ruled out for brain surgery, others will do either.

Unfortunately, with VNS, there is no way to tell ahead of time IF it will work for you. 1/3 of patient have great success and are seizure free or better off. The second 1/3 have shorter seizures, better and faster recovery with VNS and meds. The last 1/3 has no help and may have an increase in seizures.


There are many who have had great success with brain surgery also. When there is a clear problem, like your sclerosis, this makes you a better candidate than someone who does not show that problem. There are many that go to ecommunities at the efa.org website who can tell you how their surgeries went. I have met several brain surgery patients. The majority tell me they do not regret having it done, even if they were not seizure free after.


I wish you the best of luck and hope the intercranial testing goes well. Best wishes for a better life with control!

HowdyDave
New Member


Date Joined Sep 2003
Total Posts : 18
   Posted 10/11/2004 10:53 AM (GMT -7)   
Howdy!
 
If you want more information about the VNS I have 2 sites for you:
 
The VNS From A Patient's Point Of View (my site)
 

Moderator Note:  HowdyDave, Thanks for the resource, we ask that rather than use the forums to advertise, you submit links to our resource directory at http://www.healingwell.com/cgi-bin/add.cgi and we'll be sure to review it for our visitors.  Thanks.]

 

Post Edited (HowdyDave) : 10/14/2004 5:37:39 PM (GMT-6)


beckyboo
Regular Member


Date Joined Oct 2004
Total Posts : 36
   Posted 10/11/2004 6:18 PM (GMT -7)   
I've had the brain surgery done. Because technology wasn't as good as it is today when I had my first brain surgery, I had to have another brain surgery later on in life. My seizures aren't completely controlled, but my life is much better now than what it was before surgery.

I've also been told about the VNS surgery. I don't want that particular surgery because it causes you to go hoarse while it's on. I sing with a semi-professional choir and don't need throat problems. I was told that there is a new simulator surgery coming out soon. If my seizures still aren't controlled by meds by the time that comes out, I'll look into it more.

Becky


I'm a normal person.  I just have seizures that can get in the way once in a while.

Post Edited (beckyboo) : 10/14/2004 7:56:45 PM (GMT-6)


DBG
Regular Member


Date Joined Sep 2004
Total Posts : 235
   Posted 10/13/2004 3:53 PM (GMT -7)   

I had right mesial Temp sclerosis.  I had a partial right temp lobectomy in 2001.  The sz's returned and so in 2002 they removed the whole right temp lobe.  The sz's are still not controlled but aren't as bad as they used to be.  I still would suggest surgery to anyone who's a candidate.  More people are helped by surgery than not.  Recovery time isn't long, swelling and headache was about a week to two weeks.  For both surgeries I was in the hospital for 2 days.  I did suffer some anxiety about one month after my second surgery which is common.  The first one I was already on Neurontin which has anti-anxiety qualities so I wasn't affected by the anxiety so when I had problems the second time they put me back on Neurontin and I was fine.  I do have some short term memory problems, but my whole right temp lobe was taken out the second time.  Typically they only remove the amount the size of a female's size index finger.  Hope this helps.

Christine 


AARONSMOM
New Member


Date Joined Aug 2004
Total Posts : 19
   Posted 10/14/2004 3:02 PM (GMT -7)   
I have been looking at VNS for my son,and I have been advised by our surgeon the same result as Donna's son,I was told after extensive testing that VNS was our only option sice he was not a candidate for surgery. VNS does not show immediate results like the meds do,the meds usually ease off the seizures,then wears off in time as we all know and experienced.
But the VNS works the opposite,it shows the results in time,god knows how long,every patient is different,you still have to take your meds,it is nor an alternative,you also need to have it adjusted to suit you.Im looking at different and better alternatives all the time,as Becky stated,the technology is getting better all the time and Im also concerned about the same side effects as she is.The new implant in the brain sounds more accurate to me rather than the nerve itself.The bottom line is,you cannot take too many risks and you cannot do and undo things with the brain,it is a very hard decision when it comes to surgery unless it has high %.Hopefully the new implant will be available in the new future for all Epilepsy sufferers.If there wasnt any alternatives,I would definitely go for the VNS. Hope this helps.
 
ISHIK


HowdyDave
New Member


Date Joined Sep 2003
Total Posts : 18
   Posted 10/14/2004 4:41 PM (GMT -7)   

Howdy Moderator!

My site is already in your resource directory.

If a poster is in dire need of information, is it advertising to merely answer the question in a concise manner by pointing them to a site that is already in the directory?

BTW: That's a serious question not a flippant response! Many posters are not aware of the intricacies of message boards -- especially their associated databases, and link resources.

 

 


Dave ©¿©¬

Noli illigitemi carborundum decendus!

Post Edited (HowdyDave) : 10/14/2004 5:46:53 PM (GMT-6)


HowdyDave
New Member


Date Joined Sep 2003
Total Posts : 18
   Posted 10/14/2004 4:48 PM (GMT -7)   
Howdy Jen!

Do you list the other message boards in your links? The one that I posted has a sharper focus and has participants who would probably be able to answer most questions related to the VNS.


Dave ©¿©¬

Noli illigitemi carborundum decendus!

Post Edited (HowdyDave) : 10/14/2004 5:52:23 PM (GMT-6)

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