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Has anyone over 50 had the temporal lobectomy ?
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Hope4myhusband posted:
My husband had his first seizure when he was 4 hours old and is now 51 years old.
He recently went through the seizure monitoring at the Sutter Hospital, Sacramento.
It was determined that his seizures are Right Temporal Lobe.

Our next step is the WADA.

I'd really like to get some feedback on what the possible repercussions of this surgery could be as well as hear some really great stories to calm my nerves at the thought that someone wants remove part of my husbands brain.

I was recently reading stories from others and I'm so impressed that so many have had success.
I just can't seem to find anyone in his age range that could perhaps speak to possible after effects, good or bad.

Thank you so much for taking the time to read my post.

Good luck to you all in your endeavors for health.

Ellen
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dancer86442 responded:
Hello Ellen,

I'm not sure where you have been on the net 'searching' for answers. But, these 2 sites may be informative. epilepsy.com Chek out menu on the left:

http://www.epilepsy.com/EPILEPSY/surgery

This site is a support group for Epilepsy Surgery. Please join & ask your question there. Rob is a Good Friend & may have some answers or be able to point you in the rite direction.

http://www.dailystrength.org/epilepsy-surgery-group

I hope this helps. I hope Hubby passes the WADA test. GOOD LUCK to both of you. God Bless

Love Candi
 
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Hope4myhusband replied to dancer86442's response:
Hello Candi,

You are an angel to share this information with me.

I do use epilepsy.com for many things and can't believe I've not gone there as we're discussing the WADA.

Have a beautiful day.

Eric and Ellen
 
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dancer86442 replied to Hope4myhusband's response:
Hi Ellen,

Well now, You be an angel & let us know how Hubby does. Glad I was able to point you in the right direction. I know epilepsy.com has Lots of nooks & crannies. & it's easy to overlook info on any site. Even ones you are familiar with.

My daughter was recommended for Surgery & went thru all the tests, including the WADA. She passed & was eligible. But, then the Hospital 'lost' her records. When the subject was brought up again, several yrs later, they re-tested her. It was too late. Epilepsy had gone from involving a portion of her brain to All of her brain.

I hope all goes well w/ your Hubby. And I do hope you will visit us again to let us know how he is progressing. HUGS

Love Candi
 
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morgeenstern responded:
Yes I AM a great story for you. I had my surgery 6 years ago at 45 years ago. I design Robots, Eletrical Systems, Machine Logic and I still make them do the waltz. I am not going to lie to you. It took a few months to recover and I had to have my meds changed one time. It was worth every bit of recovery to me. I had my Rt. Temp removed too. Tell your husband to have fun with it. My Surgen took pictures for my two teen age boys of my surgery. When they tell me I lost my mind I tell them I have a pic. of my brain, can they show me one of theirs. The surgery works I have never had another seiz. They told me my next seiz. could kill me and I am happy I had the surgery. My shortest seiz. was 47 min. long.
Good luck
Bob
 
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Taz95630 responded:
Ellen:

I too had epilepsy for many decades. My siezures were centered in the left temporal lobe. That is where most peoples speech center is located.

The WADA test was quite amazing for me. I was very impressed by the whole process. It truly enhanced my appreciation of the gift of beauty that is life.

I was age 59 when I decided to proceed with the surgery. The surgery was very successful. I still have the "gift of gab". I live in the Folsom area.

If I can answer any of your questions, It would be an honor to do so.

Sincerely, Taz
 
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Hope4myhusband replied to dancer86442's response:
Hi Candi,

I will definitely continue to post as we go through the WADA and ultimately decide on the surgery.

I'm so sorry to hear that your daughter lost her chance to have the surgery but you never know what the wind holds.

In living with an epileptic, I've come to believe that anything is possible.
I will continue to pray for you and your daughter.

With love,
Ellen
 
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Hope4myhusband replied to Taz95630's response:
Hi Taz,

How kind of you to share your story with us. I'm so excited for your success.

We live up in Tahoe but are seeing doctors in Sacramento so perhaps when we are down there, we might get together and "pick your brain" so to speak !!

I'd love to trade contact information with you, so please contact me at eagordon59@yahoo.com as I'm sure you'd rather not put your info on this public forum.

Did you have your surgery at Sutter Sacramento and if so, who was your Dr. ?
We are seeing Dr. Robert Bergerman and I'm quite impressed with him.

I am immensly appreciative that you took the time to share your story.

Thank you,
Ellen
 
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Hope4myhusband replied to morgeenstern's response:
Hi Bob,

Like the other replies that I've received, I want to thank you for taking the time to share your story.

I'm so happy for your success with the procedure. I wish you nothing but continued success.

Love the part about the pictures. I'll have to remember that !!

Thank you for your honesty about the recovery time as I don't want anyone to sugar coat this for us since I really need to know what we are in for.

I will include you in my prayers for good health and will continue to post about our journey.

With Love,
Ellen
 
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dancer86442 replied to Hope4myhusband's response:
Hi Ellen,

Thank You. I figured I'd better reply B4 our moderator sees your posts. Do not be offended if your posts are removed. It is against WebMD policy to post DR names & our Emails. Please Post a Profile w/ your E-mail & direct PPL you want contact w/ to your Profile. All they got to do is clik on User ID to see your story & Info.

BTW: We have 2 new members. Talk a bit w/ them for more Info. Dana & Angie. Posted replies in Psuedo Seizure Thread.

Lot of Hugs! ENJOY

Love Candi
 
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clarinet2 responded:
Ellen, I went through a right lateral temporal lobectomy in 2001 at the age of 37.

My seizures were starting from three different sides of by brain and moved so quickly that doctors had a very difficult time finding the exact starting point.

Grid observation are electrodes placed directly on parts of the brain to monitor seizures and to find out where most of them started. The majority of the seizures were on my left temporal lobe which turned out to be the side that could be operated on.

The other sides could not be touched, but that was fine with me. After the surgery Feb, 2001, I was back to work in the beginning of April 2001.

Two medications still must be taken to control the seizures which start on the non-operative sides. I have been seizure free for 9 years and it was worth the effort.

It takes time and patience, but I am happy I decided to have the surgery because otherwise I would have been wondering what would have happened if I backed out.

Do not be afraid because I have met three other patients who have gone through surgery and you are not alone!

Sincerely,
Dana
 
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clarinet2 responded:
Ellen, I made some typing errors on my first email response.
I had a right lateral temporal lobectomy.

Left side, and back side were the non-operative sections. The surgery did not affect my thinking or typing I was just excited and in a hurry to respond to you.

Check with your husband's doctors regarding referrals for patients who have gone through the surgery. That is how I connected with three other patients. One friend and I have stayed in touch even though she is Nevada and I am in Minnesota.

Dana
 
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saxofone1 responded:
Hi Ellen

I had a partial right lobectomy in 2002. I was under the same medical team as Dana.

Like Dana my seizures were moving fast and were difficult to locate. At one time it appeared that they were coming from both sides.

The WADA was the test that gave my drs the info that was necessary to confirm the location of origin. My right lobe was the problem area.

The WADA is a simple test. I had no discomforts while the test was being administered.

I had the grinds done on the morning I turned 41. Happy birthday to me!

I was seizure free the 1st year after surgery. Great!

The doctors decreased my meds in the summer of 2003.

I was seizure-free for 4 years. The activity began again in 2007 after I relocated from MPLS to VEGAS.

The seizures were very minor, maybe 2 r 3 a month. Some months i was seizure-free.

At one time I was having 20 seizures a month.

My memory improved greatly after surgery. I was recalling places and phone numbers that I hadn't thought about in 20 yrs.

I have no regrets about the surgery. The few seizures that I now have don't bother me. The drop from 20 seizures/mo to
2-3.mo is great.

Have you checked with the EPILEPSY FOUNDATION in Pleasanton about locating someone(a mentor) who is willing to talk with your husband and you.

Epilepsy Foundation, Northern Ca
5700 Stoneridge Mall Rd, #295
925/224-7760 www.epilepsynorcal.org

Any questions?

Angie
 
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meredithc18 replied to saxofone1's response:
hi Angie,
I was reading all of these responses and see that you had your rt. temporal lobe operated on for ep. and still had sz. afterwards. I had my surgery June 2010 and have had about 6 sz. since. I was very frustrated thinking that "it didn't work" and I was the only one this happened too.
My memory has also improved, which is amazing!!!! I also have no regrets about having my surgery, the sz. decreased and that is all that matters.
Thank you for posting that and letting me know I wasn't the only one out there!

Meredith
 
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saxofone1 replied to meredithc18's response:
hi Meredith

Don't be discouraged. You have come a long way.

I have met a few others in MPLS who had the surgery but did not have complete elimination.

Like us their seizure activity was greatly reduced. They too have no regrets about having done the lobectomy.

LESS SEIZURES AND LESS MEDS. As Tony the Tiger would say, "THAT'S GREAT!"

Many surgeries will eliminate the seizures. Others may REDUCE the activity.

Your brain might still be healing. Brain surgery, like all other surgeries, is a traumatic experience on the body.

Either way, I think we should be happy about our outcome.
.
Isn't it better to live with the few we still have than that number of sz before the lobectomy?

Remember, ours is a case in that 'less is better than more.'

Have a good day,
ANGIE


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