2nd Brain Surgery, what would you do?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Messages
7
Reaction score
0
Points
11
Just looking for opinions folks, not someone to decide for me.

Scenario:

Focal aware seizures since age 6

Had right temporal lobe hippocampectomy in 09 (age 25 then), seizure free and aura free for about 5 years.

Removed off tegretol, auras restart, leading to focal aware w/ shaking etc maybe twice a year, however at least five auras every two weeks.

Just back from week in EMU, off meds full focal aware happened etc. turns out back in 09 surgeon only removed the "problem" area, they usually remove some of the area around this, but decided against this back then. This left extra tissue in that area which is the current focal point.

Decision: Further surgery being offered, is it worth the risk again plus the recooperation time etc?
  • Whats changed since 09?
    • I now have a house and a morgage,
    • Can hold down a job full time(and can cover up memory loss etc that we all know about, I've a good poker face :) )
    • We're expecting our first child in Dec
What would you do?
 
Tough decision
I’ve been fortunate with a support system of family and friends. That was invaluable
Quality of life…How much could it improve.


  • “There is one consolation in being sick; and that is the possibility that you may recover to a better state than you were ever in before.” —Henry David Thoreau.
 
Hi rude awakening,

I had a right temporal lobectomy done but I was told from the beginning that it would only reduce my seizures
and take my word I'm glad I had it done because my neurosurgeon and Epileptologist told me the more absence
and complex partial seizures I had the more brain damage there would be over time and the seizures would get worse.

You might just need to change your seizure meds especially if you have been on it a long time. Ask your neuro to do
a DNA test on you and this will find the best seizure med for you with the least side effect or it will show if are drug
resistant like me.

I had scar tissue on the right temporal lobe that triggered my seizures and I had them for so many yrs. that damage
spread from the right temporal lobe all the way over to the left temporal lobe and that's why my seizures were only reduced.
You may want to try using the medical marijuana my Epileptologist told me to start using it along with taking vitamin B12 1000 mg.
and zinc 50 mg. once a day and that has also helped me out.

I wish you the best of luck and May God Bless You and Your family,

Sue
 
... in 09 surgeon only removed the "problem" area, they usually remove some of the area around this, but decided against this back then. This left extra tissue in that area which is the current focal point. ...

It is my understanding that brain surgery (removal of brain tissue) always leaves surgical scars (no matter how much or little tissue they remove). These surgical scars can take years to heal which is why many folks who undergo these procedures have great results for a few (2-???) years before seeing seizure activity again.

If you have the procedure again, you might find the same pattern repeating (several years seizure freedom, then seizure activity returning). Or you might attain better results (or worse - but I didn't really want to "say it out loud"). No way to know for sure.

If you don't have the procedure, you have to manage with your current situation (and hope it doesn't get worse). How severe an impact is it having on your life?

Seems to me there are risks to having the procedure and risks to avoiding it too.
 
Back
Top Bottom