Let's talk about brain surgery

[vtsammy]

Hello fellow epiletpics. I just wanted to reply to this thread as well. I had a left temporal craniotomy in October 2007 that was not successful. I was torn between 2 drs, where 1 from John Hopkins University in Baltimore, MD switched me from tons of various combinattions of medications, and another one at George Washington in Washington DC told me, "you've tried too many diff medications it won't work for you..surgery is the only way" So because of that I decided to have surgery. I think I was asleep during the seizure and all I know that was my recovery time sucked. My face was swollen for I don't know how long and still to this day the left side of my face is numb and the tissue above my eyebrow has not recovered. But you can't really notice unless I try to open my eyes wide open..the right will open wereas the left side won't open all the way. After the surgery he told me that the tissues will repair in about 6 months or so. I went back in 6 months, and not much change. He said to come back in a few months and it's been 1 year and nothing has changed. He said that I may have to get plastic surgery to lift that part of the tissue above my eye and another Dr. that works at George Washington should be able to fix that no problem. When I went to that appt w/ the Dr he told me to go see, the Dr. said he said to me "I don't know what kind of surgery he's talking about. I'll have to speak with him and get back to you Sam. I don't do that type of work." So now that has me concerned. I'm wondering if I can sue him because the tissue above my left eye is torn and I don't think it will heal properly, but I did sign a bunch of paper work before my surgery but I'm not sure if I had to sign some waiver that I won't hold them responsible. This has all been a real pain in the ass, but I've been on some new meds and it's reduced my seizures to a couple times a month which is really good. It may sound back but I still would like to get some money for things that will not heal. What do you guys think?

Sam

[stilldancing_98]

I would get all my paper work from the hospital first.I believe its pretty hard to get. But you have to see what they wrote down. Or get a lawyer to do it. Maybe you could see if they are willing to let you have all your history as long as you sign for it.Something like that.

[KAM]

Hi Mat,

I had a left temporal partial lobectomy with cortical remapping back in 1998. It took 11 1/2 hours and I was awake during the entire operation. They would touch certain things while they were in there and you couldn't talk, see, hear, count, spell, etc. I was glad that I was awake considering where they were operating. I didn't feel anything until they put my skull back together, whatever pain killer they used had basically wore off. It was the best thing I could have done to stop the seizures and convulsions, I've been seizure free for over ten years. I've come close a few times but my meds will work within ten minutes after the auras start. I had to take six weeks off work, I tried to get the surgeon to let me go back after thee weeks but he would not let me. My face and head were pretty swollen for about three weeks. After surgery the hardest thing to do was talk, I never went to therapy for it, I just kept getting madder at it and finally figured it out.

[hawke86]

When I had the brain surgery on my left temporal lobe. It was the worst mistake that I ever made. It didn't help me in any way. For anyone considering to have this kind of surgery needs to think seriously about it. The best surgery I had to control my seizures was when I had the V.N.S put in. Next week I'm going to have it done again.

[Mandy]

Hello! Well just to update everyone on my surgery. So far so good, I haven't had any seizures or memory problems. They removed my left temporal lobe and i now have titanium plates on my left side! My outlook on a normal life is actually hopeful now!

[Belinda5000]

Hi Matt,

I had a RTL in `1982 and I was having hundreds of seizures a month.
My surgery lasted 12 hrs , an dI was awake for it.
My surgery did make a difference.
I might not be able to drive but than I don't have hundreds of seizures a month.
scar tissue was removed on my right temporal lobe.
I've never driven and get around around just fine by the bus sytem or the subway where I live.
I wouldn't care to drive while I'm having seizures and end uphurting someone or killing someone.

Belinda

[KAM]

Hawke86, sorry it didn't work out for you; best of luck with the V.N.S., glad that V.N.S. works for you. Great news Mandy, it worked for me too! Belinda5000, it sounds like it is much better for you since you had the surgery, I agree with not driving. I was in one accident because of a seizure and it was devastating when I hurt someone.

[RobinN]

http://www.dailyrecord.co.uk/lifesty...6908-20801612/

This young girl faces removal of half of her brain.

I did not see anywhere that they tried Neurofeedback first. It says she has memory loss, but now to go to such drastic extremes, it seems like they could at least give an alternative method a try.

Breaks my heart.

[epileric]

http://www.dailyrecord.co.uk/lifesty...6908-20801612/

This young girl faces removal of half of her brain.

I did not see anywhere that they tried Neurofeedback first. It says she has memory loss, but now to go to such drastic extremes, it seems like they could at least give an alternative method a try.

Breaks my heart.

I thought the same thing when I read that. My assumption is that that is what the doctors said was the only resort left.

[RobinN]

At our neurologist.. we were told meds then surgery


"only resort left" ???

[epileric]

I was told by 2 neuros that surgery was the only other path than meds. Maybe I'm a bit cynical because of it lol

[EMILY]

Hi Mat

I want to ask you about the surgery you had, and if it was succesful, how you are getting on. My daughter (Emily 6) had the operation done on the right side, after six months she is having auras, woundering if you had of this??

She had the so called hippocampectomy, is this what you had?

Melinda(a worried mum)

[EMILY]

Hi everybody

My daughter had hippomacpectomy on the right. Would like to ask if anyone had this type of surgery?

Melinda

[Zoe]

Hi Melinda,
Welcome to CWE!
I had a temporalobectomy [right side] including resecting the hippocampus and amygdala.
I saw some improvements at first, but within a few years was having just as many partials as before the operation. About 10 years later, I finally got them to stop using a combination of diet, exercise, behavior modification, yoga, and neurofeedback. I've been seizure free, no drugs, since 1998.

There have been some very promising studies on diet and epilepsy since 2002 using a modified version of the Atkins diet which is easier to use than the ketogenic diet. In the earlier studies about 2/3 of the partiipants, children and adults, improved, seizure frequency went down or stopped altogether.
Johns Hopkins is doing three studies now.
You can talk to other parents who've used the diet and get more information here at the links below.
http://atkinsforseizures.com/communities.html

http://health.groups.yahoo.com/group/atkins4seizures/
Johns Hopkins is doing more research on it.


Further research into use of Atkins-type diet to treat children's ...The modified Atkins diet, the researchers say, has no restrictions on calories, ... the recent report 'Epilepsy in England: time for change' this afternoon. ...
http://www.epilepsy.org.uk/node/1096

Hi everybody

My daughter had hippomacpectomy on the right. Would like to ask if anyone had this type of surgery?


Melinda

[Zoe]

I was told by 2 neuros that surgery was the only other path than meds. Maybe I'm a bit cynical because of it lol

That's what I was told, and I'd almost died in my sleep a couple of times during nocturnal convulsions.
But the neurologists and neurosurgeons were wrong, totally wrong. How would they explain that ten years after the surgery failed, I got my seizures to stop without drugs?

[bornleader]

That's what I was told, and I'd almost died in my sleep a couple of times during nocturnal convulsions.
But the neurologists and neurosurgeons were wrong, totally wrong. How would they explain that ten years after the surgery failed, I got my seizures to stop without drugs?

Zoe, can you explain "How would they explain that ten years after the surgery failed, I got my seizures to stop without drugs?" What survery and how did it fail? How did you affect the stoppage of your seizures without drugs?

Thanks,

Dave

[Sandy Deering]

I had brain surgery in 2007, tumour on left temporal lobe, it hasn't stopped my seizures at all. There is still some tumour left and they are now concerned because my sizures are worse than before. They are now organising an MRI scan to see if the tumour has started to grow again, but also want to do a test called WADDA test not sure if anyone has heard of it??

[Sandy Deering]

This is what they are going to test me for. Did she have the WADDA test done first to test her memory and speech??

[Mike]

Im almost sure that the language center is on the left side,left temprol lobe. when operating in that aera they do mapping so that speach isnt messed up afterward. I believe that your kept awake for brainmapping.

[stilldancing_98]

Yes you are. Its a wierd test but ya gotta do it. I think its interesting. It tells much more than speach.I had a rtl but now I am having seizures from there and the lt lobe to. But I have had much more issuse then just surgery.