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Husband Pre-surgery (TLE - complex partial)

Thu, 04/14/2005 - 01:44

Hi there, my husband and I just visited the surgeon last week and he informed us that the only real option now is surgery. Tabs haven't been working and are unlikely to after a period of 5 yrs sz free. (left temporal lobe affected, blacks out and lip smacks then comes to)

He mentioned that he may need to come into hospital before having the actual surgery to remove the part of the temporal lobe that's affected to have electrodes put directly onto the brain for a week of telemetry monitoring to find out exactly which bit they have to remove.

The doctors are reviewing his telemetry data from last year and see whether further monitoring is required. We go to see him again in 2 months time to find out whether one or two procedures are required. We are both scared at the prospect of surgery but know this may be the thing that can get rid of the szs. He's had 3 since seeing the doctor last week after one month of none!

I'd love to hear from other people who are in the same or similar situation of facing surgery or have had it and how they proecessed everything.  I think the prospect of a week of telemetry monitoring with the electrodes connected scares him more than the surgery itself. Probably me too actually because he almost went nuts last time being in hospital for a week hooked up!!! It was the first time he'd ever been in hospital and he's never had any surgery before so he's struggling a bit with never having had an op before let alone on his brain.

Thanks for listening!

Comments

RE: Husband Pre-surgery (TLE - complex partial)

Submitted by fins51 on Wed, 2005-04-13 - 21:29

I just found your entry and was very interested. I was having seizures so often it got frustrating. I decided to go through the same process that your husband is thinking about doing. I had the surgery in October, 2002. Of course ,I too, was very nervous. I decided to have the testing surgery done and the removal surgery immediatley following that. I have been happy ever since. My last official seizure was the day before the second surgery. Since than, I've had no problems at all. I'm able to drive again, go for a run by myself, & not fall off the treadmill (which I did a couple of times). I feel it was definatly worth it.

Here's wishing you & your husband the best of luck !!!   

I just found your entry and was very interested. I was having seizures so often it got frustrating. I decided to go through the same process that your husband is thinking about doing. I had the surgery in October, 2002. Of course ,I too, was very nervous. I decided to have the testing surgery done and the removal surgery immediatley following that. I have been happy ever since. My last official seizure was the day before the second surgery. Since than, I've had no problems at all. I'm able to drive again, go for a run by myself, & not fall off the treadmill (which I did a couple of times). I feel it was definatly worth it.

Here's wishing you & your husband the best of luck !!!   

RE: Husband Pre-surgery (TLE - complex partial)

Submitted by flashbakx on Wed, 2005-04-13 - 23:30

Hey there my names Pete, im 29.

      I have had complex partial sez before. until I had my operation in 2000. It seems to me your worried about the process or just what to expect. Well It is the best thing I could have done for myself.  I had a tumor in my right temporal lobe that was removed and every since then i have been totally with out one seizure.   I still get the simple partial seizures (the auras) though. But I can live with them. An occasional strong de ja vu feeling never hurts anyone.
  Tell your husband the week is nothing. All it is it laying back in bed, watching television with a button next to you, who cares if wires are attatched to suction cup like things on your head. you dont feel them at all. . If you feel a fit coming on push the button and thats all there is to it. The truth besides monitoring your brain waves is to determine whether your telling the truth or not about having epilepsy. I know that sounds awful  but my neurologist told me that, as alot of people fake it for some fucked up reason or another. Im in Australia by the way so excuse my language lol.

The surgery will not go ahead until your husband has had a psychriatric review (they may or may not  tell you they are doing this, and may take the form of a memory expert or someone of that nature).  They also review you to determine if the surgery is worth it , in the way he has a good enviroment to recover. Im sure he does so this part means nothing. After that they will test his memory and that often is very simple.

Ok now the harder part.  Well. You will be briefed on certain things the doctors and u will way up the benefits for your husband. As there are some very slight (if you have had epilepsy these are slight). side effects. I have lost some of my peripheriual visual in one of my eyes as they bumped the optic nerve. And my short term memory is slightly altered. Not to the point in hurts my life, just simple things like forgetting a movie i just watched 3 days ago.

The surgery went for 5 hours for me. (but i cant rememeber going to sleep or waking up so its instantaneous).

I highly recommend the surgery. It gave me my life back apart from my choice of medications for the epilepsy. If you have any questions at all please dont hesitate to email me back at flashbakx@hotmail.com . Pete.

Hey there my names Pete, im 29.

      I have had complex partial sez before. until I had my operation in 2000. It seems to me your worried about the process or just what to expect. Well It is the best thing I could have done for myself.  I had a tumor in my right temporal lobe that was removed and every since then i have been totally with out one seizure.   I still get the simple partial seizures (the auras) though. But I can live with them. An occasional strong de ja vu feeling never hurts anyone.
  Tell your husband the week is nothing. All it is it laying back in bed, watching television with a button next to you, who cares if wires are attatched to suction cup like things on your head. you dont feel them at all. . If you feel a fit coming on push the button and thats all there is to it. The truth besides monitoring your brain waves is to determine whether your telling the truth or not about having epilepsy. I know that sounds awful  but my neurologist told me that, as alot of people fake it for some fucked up reason or another. Im in Australia by the way so excuse my language lol.

The surgery will not go ahead until your husband has had a psychriatric review (they may or may not  tell you they are doing this, and may take the form of a memory expert or someone of that nature).  They also review you to determine if the surgery is worth it , in the way he has a good enviroment to recover. Im sure he does so this part means nothing. After that they will test his memory and that often is very simple.

Ok now the harder part.  Well. You will be briefed on certain things the doctors and u will way up the benefits for your husband. As there are some very slight (if you have had epilepsy these are slight). side effects. I have lost some of my peripheriual visual in one of my eyes as they bumped the optic nerve. And my short term memory is slightly altered. Not to the point in hurts my life, just simple things like forgetting a movie i just watched 3 days ago.

The surgery went for 5 hours for me. (but i cant rememeber going to sleep or waking up so its instantaneous).

I highly recommend the surgery. It gave me my life back apart from my choice of medications for the epilepsy. If you have any questions at all please dont hesitate to email me back at flashbakx@hotmail.com . Pete.

RE: Husband Pre-surgery (TLE - complex partial)

Submitted by rfskye on Thu, 2005-04-14 - 01:44

I've had the week-long telemetry twice now. First thing they do is tell you not to sleep, then they take away all your meds because they want you to have as many seizures as possible. Talk about cruel and unusual punishment?? "This is going to hurt me more that it hurts you..."

Right, mom.

The first time, they located the tiny scar tissue in my temporal lobe. It was weird looking at the computer printout later, and seeing this tiny thing much smaller that a pinhead that has entirely and drastically changed my life. Made me feel like grabbing a chisel and hammer and digging the dam thing out.

Recently I had a rare (for me) generalized seizure and landed on my head on a concrete floor. I wound up with a subdural hematoma, or bleeding between the outer layers of the brain. It took a while to stop the bleeding, since I also take blood thinners for an arterial disease. So they stopped the blood thinners, and I started having chest pains. Talk about a Catch-22.

Meanwhile, after a half-dozen CT scans, they hooked me up for the VEEG, or telemetry. I hate every minute of it. Makes me feel like a caged animal. If anyone is going for one, bring a hat. You can wear it over the wires and not look so foolish, at least. And wear a button-up shirt, since you won't be able to pull a tee-shirt over the wires all week!

Don't pay too much attention to me, though. I'm just angry tonight. Tomorrow is another day--even a warm and sunny one here in NYC.

(TLE trait of the day: hypergraphica.)

Peace, Love and Understanding,
Bob

I've had the week-long telemetry twice now. First thing they do is tell you not to sleep, then they take away all your meds because they want you to have as many seizures as possible. Talk about cruel and unusual punishment?? "This is going to hurt me more that it hurts you..."

Right, mom.

The first time, they located the tiny scar tissue in my temporal lobe. It was weird looking at the computer printout later, and seeing this tiny thing much smaller that a pinhead that has entirely and drastically changed my life. Made me feel like grabbing a chisel and hammer and digging the dam thing out.

Recently I had a rare (for me) generalized seizure and landed on my head on a concrete floor. I wound up with a subdural hematoma, or bleeding between the outer layers of the brain. It took a while to stop the bleeding, since I also take blood thinners for an arterial disease. So they stopped the blood thinners, and I started having chest pains. Talk about a Catch-22.

Meanwhile, after a half-dozen CT scans, they hooked me up for the VEEG, or telemetry. I hate every minute of it. Makes me feel like a caged animal. If anyone is going for one, bring a hat. You can wear it over the wires and not look so foolish, at least. And wear a button-up shirt, since you won't be able to pull a tee-shirt over the wires all week!

Don't pay too much attention to me, though. I'm just angry tonight. Tomorrow is another day--even a warm and sunny one here in NYC.

(TLE trait of the day: hypergraphica.)

Peace, Love and Understanding,
Bob

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