temporal lobe surgery

[Mandy]

Hi Nancy! I'm glad things are going well with you. Thomas Jefferson is a really great hospital as well. I learned so much during my week stay there. I feel confidant with my dr's, But i still have concerns. I'm just doing alot of research and hopefully it will all work out. Good luck with everything and keep in touch!

[haird18]

Mandy,
In 2000 I had a right temporal lobectomy in Dallas ,TX at Parkland hospital. It is a good option for some, but others it doesn't always work out. So please weigh the options before. And make sure you've tried everything that is out there. Because I have a rare condition where I don' t have a corpus callosum and a Dandy Walker which is cerebral palsy and cause me to now have complex partial seizures when I used to have petit mal seizures. Just take care of yourself and we will all be praying for you.
GOD BLESS
David hair

[josieb]

Mandy,

I'm also from PA & had the Left Temporal Lobectomy at Allegheny General Hospital in Pittsburgh in February of 2006. Things were definitely not great at first but have since improved. I've been seizure free since September 2007 and just wanted to wish you good luck with everything.

Sincerely,
Josie

[Nancy]

Josie -- if you ever feel comfortable I'd would like to hear what happened after your surgery.
And I'm very glad it's getting better now.
I've added you to my prayers.

[hawke86]

I have that type of surgery. I had a bad experience with it. It didn't help me much. I hope other people have a better turn out. Good Luck to anyone that has it done.

[josieb]

Nancy:

My first few months of recovery were ok - in a lot of pain and major problems with dizziness & ear ringing (which I still deal with), but no seizures or auras or anything. Then my neurologist lowered my Dilantin intake after only a few months and due to my continued problems with severe depression, he put me on an antidepressant (Lexapro). I was on it for about 5 months, but things only seemed to get worse. The withdrawal from it was severe -- even though the doctor said it was mild and there wouldn't be any problems.

I had my surgery in late February of 2006, and then had my first (totally different type of) simple partial seizure in late June of 2006. They continued on a monthly basis, averaging around two to four a month. This only added to the depression and my neurologist started me on different meds. My side effects and depression worsened, but I went back to work and kept trying to deal with it all. Then in February of 2006, I had my first and only grand mal seizure. I was rushed to the hospital and it was determined that this seizure had been caused by the medication Trileptal, which had taken all of the sodium out of my body.

I began treating with a new neurologist and was started on other meds. The simple partial seizures and side effects continued and the neurologist kept trying different dosages and different meds. My last seizure was 9/11/2007. I am now on Cloraz Dipot (Tranxene), Phenobarbital, and Diamox. Although I still have the dizziness and a lot of bad days with memory problems and not feeling well, I count my blessings and continue to make it through each day.

After over four years, I did get my driver's license back in May of this year and got a new vehicle. Needless to say, I'm still petrified that it's all going to come back any time. I usually only drive to and from work for now. Hopefully, if things continue to get better, I will feel more comfortable, but there's always that uncertainty.
(Sorry my posting is so long)
Thanks,
Josie

[Nancy]

Thank you Josie ... I understand everything you said (except the meds...I'm not familiar with Cloraz Dipot - that's one I've never taken.)
The surgery is no fun and it's scary as hell (well, not THAT scary) but I'm glad things are finally looking up for you.
My memory is still very bad and my word problems are almost hopeless sometimes but I keep being positive about not having seizures (Please God --- no more seizures)
Again, thank you so much for talking to us and telling what happened.

Hawke - I'm sorry you had such a hard time and rotten "luck". I wish things had been better.