Epilepsy Foundation

Life after Brain Surgery- Epilepsy

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Life after Brain Surgery- Epilepsy

Looking to chat and hear from others around the world. Also help if I can in any way. I had complex-partial seizures since age 3. Then had my surgery in May 22nd 2008 on my (Left Temporal Lobe). Since then been seizure free.

Members: 231
Latest Activity: on Monday

Discussion Forum

sorry so many questions. .

Started by Kathy Tedesco. Last reply by Pam Sullens on Monday. 3 Replies

If the first yr after having brain surgery you have only 6 seizures (much less than prior to) but then during the second yr you have 6-8 seizures and there's four months left in the yr, do you think…Continue

seem to be riding the scariest rollercoaster!

Started by Kathy Tedesco. Last reply by Kathy Tedesco Sep 4. 8 Replies

Two months ago I was happy and looked mostly at the positives but now can only think of the others. Really was thinking I was getting excatly everything I wanted. Now I've had two more seizures, had…Continue

Multiple Brain Surgeries

Started by Andrew Cooper. Last reply by Brian P. Lund Jul 30. 1 Reply

Hello, I have had seizures since I was 9 years old.  I have tried every medication that there is and have a VNS installed as well.  I eventually got to the point where I decided to try brain surgery.…Continue

Cognition After Brain Surgery

Started by Ann L Barbour. Last reply by Robin Link Jul 15. 4 Replies

Hello- It has been eight years since I had unsuccessful temporal lobectomy surgery and I have been disappointed from just after the surgery and still today in my neurologist and neurosurgeon. It…Continue

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Comment by ejl1558 on July 28, 2014 at 7:12pm

Kathy, in the early months, I felt chills down my left side.  I got the feeling they were auras but I wasn't complaining.  Then I went in for my six-month eeg and my epi was looking at it as well as me.  I asked about the spikes I saw and he told me they were surgery-related.  He told me there was no sign of seizures.  I had trouble believing him after 40 years of seizures but I eventually decided to accept what he said until some thing happened that proved him wrong.  Fortunately, he was right and I've learned to believe he knows what he's doing and saying.  The next time I got a scare was the night before my five-year appointment.  I explained how I felt, convinced him I wanted an eeg to convince myself I was OK then heard the same thing again...there's no sign of seizures.

Hope all works out for you, too.

Ed

Comment by Kathy Tedesco on July 28, 2014 at 10:58am
Travis and Ed congratulations on how well it's going. Jennifer I am very sorry..hope things get better!!!
Comment by Kathy Tedesco on July 28, 2014 at 10:54am
Thank you guys so much. .sorry I didn't respond sooner..still figuring this site out.
I have had 4 seizures since the surgery, but that is much much less than before and the last one I had was after going 6 months and 2wks seizure free. I do seem to always find a reason these occurred, forgot to take meds, etc, not sure if I'm justifying them. It could just be a coincidence that each have had a reason why. I hope this happening doesn't mean surgery didn't work. Sorry, to ask but is this how it started for you. I do feel I shouldn't complain, much much better than before. Was just kinda hoping they were all the way gone. Again, thanks so very much
Comment by Jennifer Jacobs on July 27, 2014 at 10:42pm

Amen. I am glad you are seizure free. I had surgery, only I wasn't as lucky. They said they couldn't stop it because the brain waves were moving to fast. Like you, Ashley, I have been having them since I was 3 but I think mine only got worse. They told me I had partial seizures, but now I have Grand Mal. My memory has gotten worse since then even though everyone has been telling me it hasn't. Many times I tell my family I never went somewhere and they tell me I did. Why don't I remember? I think I've gotten worse since the surgery, not better. God Bless all you who have become seizure free.

Comment by ejl1558 on July 27, 2014 at 11:00am

Kathy, the surgery comes with a lot of changes and some hang on forever...or so it seems.  I saw a nose-dive in memory just after surgery...like it could get any worse but it got much better.  I'd say I went from a 30% memory before surgery to 15% just after surgery to about 60% now.  I would say my moods are more noticeable but could that be because without the need to worry about seizures, other things are now on your mind?

One thing I want to keep in mind is how my attitude has changed.  As I went off meds, my sons were pointing out positive changes in my attitude.  I used to be about 80% serious but now it's about 5%.  I got a second chance at life and I can't let anything that goes wrong take away from that.

Changes are numerous in the early stages after surgery but eventually they taper and hopefully you'll reach my position (13 1/2 years seizure-free) and feel the best part of your life is on its way.  I just enjoyed a week with my first grandchild, have another on the way in about three weeks and they have the opportunity to see a healthy grandpa...and grandpa gets to watch them alone at times when that was never a chance before the surgery.  Good luck!

Ed

Comment by TravisEd on July 25, 2014 at 12:00am

Kathy, I had an anterior temporal lobectomy and removal of a good chunk of the left hippocampus (left hemisphere obviously).  No problems with memory or emotional issues thankfully.  It took me over a year to get back on track.  I'd suggest give yourself time...but keep notes to bring up with the doctor.

It's coming up on 2 1/2 years for me NeXT month.  I'm just starting to get back on track it feels like.  Still have no idea what I want to do with my life now that I am seizure free.

--Travis

Comment by Kathy Tedesco on July 24, 2014 at 7:49pm
Thanks Pam!!!
Comment by Pam Sullens on July 24, 2014 at 10:52am

Kathy, This is the first time I"ve read this. -I am not a "blog" person either. Kathy-I can tell you what my neuosurgeions tol me regarding the TL-and the possible side effects of having the damage removed from that area of the brain.-The reseach out there states that memory-and be affected-and moods-Have you talked with your neurolgist about this?

Your brain may be just healing? It takes the mylon (the protective layer or tissue that surrounded your damaged-nerves-so-that may be why you have not had seizures-but still have the memory loss- It's kind of like umbrella that has a small hole in it-(the umbrella is the mylon and the person holding the umbrella represents the brain tissue/nerve endings that the umbrella is protecting. It's kind of a weird example-but I hope that may help. Before I had my right frontal lobe I spoke to someone who had TLS-her memory was affected as well. She did know that risk but took it anyway-Her moods were not affected-

I am sure you may know this-but it can take up to 2 years for brains to fully heal after having surgury. That brain heals much slower than the rest of our tissues-

I am sorry that you are feeling a bit overwhelmed> Are you doing things to exercise your brain? Any type of word puzzles or games will help-There is site-Luminosity. You can try it for free and the membership does not seem that expensive.- Maybe that is an investment that would help you? I wish ;you the best.

I have not have any seizures for 14 months and am going off my Keppra in August!

Take care now-=and I hope this information helps you.

Blessings, Pam

Comment by Kathy Tedesco on July 24, 2014 at 10:22am
Sorry if you guys are reading my question for 3rd time. I'm not sure how these blogs work. I had brain surgery (left temporal lobectomy and left hippocampus) it has worked very well so far. Had this done a yr and 5 months ago. My memory, moods, emotions, etc have changed. Was wondering if this has happened to anyone else. My memory and all that were worse about a yr ago, seems slowly but surely am becoming myself again. Hoping maybe that come with time. Have to point out, very happy that I am doing so well, just sometimes overwhelmed with these things, that I know are smaller than where I was before.
Comment by Pam Sullens on December 7, 2013 at 10:49pm

I had a right frontal lobe re section. I think a re section is taking a smaller area of the brain? You may want to clarify that with your neurosurgeon. Blessings, Pam

 

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