Surgery

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Chris515

Chris515

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Hey everyone,

It's been a while since I've been on here. I hope you're all doing well.

I quit my job in November and I've been doing a lot of volunteering. I was lucky to be selected to be the VP of the Epilepsy and Seizure Association of Manitoba. I love the people and I love the work.

I met with my epileptologist a few weeks back. Basically he said as the years roll on my right temporal lobe epilepsy will spread to my left temporal lobe, and is doing tests now to see if it's already starting. He has suggested surgery to remove part of my right temporal lobe.

To say I'm nervous is an understatement. I think I need to do this but it's a major decision. Honestly, this is quite frightening. Any suggestions or thoughts would be greatly appreciated..

Thanks everyone.
Chris
 
Hey Chris,

If you remember, I had surgery on my LEFT temporal lobe, that is the memory center. So if you're considering having your RIGHT temporal lobe operated on now, maybe you should before it does more damage to the left side. The sooner the better. Has the dr. mentioned any other treatments besides surgery? I know it is a very difficult decision.
Keeping my fingers crossed for you.
 
Hi Chris --

It IS a big decision. Recommend that you do a lot of prep in terms of getting informed so you'll feel confident going into surgery. And keep us posted! We will cheer you on every step of the way. :)
 
I would ask the DR when this will happen. I have had right TLE for 37 years, 31 years totally uncontrolled, thousands and thousands of simple partial, complex partial and a bunch of total loss of consciousness seizures and my seizures are still confined to my right temporal lobe, no left side involvement at all.

The Dr's cannot predict anything about this disease, who will get it, will it spread, which meds will work, will the seizures ever generalize? They cannot even predict if the surgery will prevent seizures.

I would definitely get a 2nd and 3rd and 4th opinion before getting potentially unnecessary brain surgery.

Whatever you decide I wish you good luck and freedom from seizures.

Peace,
Frink
 
Frink said:
The Dr's cannot predict anything about this disease, who will get it, will it spread, which meds will work, will the seizures ever generalize? They cannot even predict if the surgery will prevent seizures.

I would definitely get a 2nd and 3rd and 4th opinion before getting potentially unnecessary brain surgery.
Click to expand...
:agree:

Sometimes surgery is necessary but, IMO, it should be the option of last resort not something a patient gets talked into.

Think long and hard before putting your central nervous system under a scalpel.
 
Welcome Back Chris,

My present neurologist always tells me to do a cost/benefit analysis to decide what I want to do.

Ask him what makes your epilepsy a "travelling epilepsy" and how likely is it to spread to your left lobe. It might be a scary thought but what is the statistical likelihood of this happening?

If it spreads what are the possible symptoms, how likely is each symptom and how severe might they be at their best & worst?

Based on statistics of previous surgeries of this type, what are the possible effects of surgery, how likely are they & are they likely to be permanent?

Based on previous surgeries of this type, how likely is it to help.

Make sure he gives you that actual numbers, not just tells you pretty good (or bad) chance. Those words are very relative. Also ask how many of these surgeries have been done. The bigger the number, the more accurate it's likely to be.

Having that specific information makes it easier to balance what course of action would most likely be in your best interest.
 
I have it in both lobes to be honest it my memory I not able think of words and definatly no spelling.i am very aware something wrong and made me very depressed cos I started putting limits on my life don't do this that or other incase.I had a turn around think sod it I going to America Australia I did.i needed doc in Australia and NZ nothing serious.
All I can say I get tired it do alter sleep patten and few other things I unable to verbalise .For myself I not have operation this stage of my life if been offered it years ago I still not have it
Good luck but please get second opinions
 
Hi Chris

Good to see you again.
As you would probably know I had left temporal lobe surgery almost 5 years ago.
For me it was the best option as meds weren't working & the specialists were concerned about the risks of SUDEP if I continued to have the seizures.

When surgery 1st came up I did as much research as I could on anything to do with surgery eg the epiologist i was referred to, the hospital he worked at, the surgeon doing the surgery & the surgery itself.
I had also spoken to people who had the surgery some with good outcomes & others with not so good.

With my surgery it went well, I had great recovery & no issues for the 1st 2 years then started having focal seizures (simple partials) in June 2013.

Good luck with everything :)
 
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As to what CQ mentioned, most docs DON'T even mention SUDEP to their patients. It isn't until it happens in someone's family that they hear about it. Question your dr. on this issue as well. It's an awful thing to think about, but so is ongoing seizure(s) and injuries due to seizures.
 
Cint said:
As to what CQ mentioned, most docs DON'T even mention SUDEP to their patients. It isn't until it happens in someone's family that they hear about it. Question your dr. on this issue as well. It's an awful thing to think about, but so is ongoing seizure(s) and injuries due to seizures.
Click to expand...

One in two thousand
 
Cint said:
As to what CQ mentioned, most docs DON'T even mention SUDEP to their patients. It isn't until it happens in someone's family that they hear about it. Question your dr. on this issue as well. It's an awful thing to think about, but so is ongoing seizure(s) and injuries due to seizures.
Click to expand...
My original neuro who was a general neurologist never mentioned SUDEP.
It wasn't until I was going through my pre surgery tests that the epiologist mentioned SUDEP. My Mum had never heard of SUDEP before so she was surprised, I had seen it mentioned on here so knew a little bit about it.

My epiologists had also gone into great detail about the surgery eg surgery is not a cure but another treatment to help with seizures, there was a very slim chance I could have stroke & the % they gave us the surgery would be success.
 
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seagull said:
One in two thousand
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Are you speaking of those in England? Here in the U.S., it is one in 1,000.

http://www.epilepsy.com/learn/impact/mortality/sudep/sudep-stories
Sudden unexpected death in epilepsy (SUDEP) is the leading cause of death in young adults that have epilepsy and uncontrolled seizures. Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP, and if seizures are uncontrolled, the risk increases to more than 1 out of 150.
Click to expand...
 
CQ:) said:
My epiologists had also gone into great detail about the surgery eg surgery is not a cure but another treatment to help with seizures, there was a very slim chance I could have stroke & the % they gave us the surgery would be success.
Click to expand...

So did mine. I had never heard of SUDEP either. I never had actually met anyone who'd been thru such an ordeal until several years ago at a local coffee shop. A lady was hanging a poster for the Epilepsy Foundation, focusing on SUDEP. The picture on the posture was her daughter, who had passed away several years earlier from this awful thing. The girl was only 16 years of age and was diagnosed with E just 5 years prior to her passing. NO ONE had told this family about SUDEP before. Now, telling the world about it IS THEIR GOAL.

And surgery isn't a CURE, but a treatment to help control seizures. There are NO guarantees. Some win, some lose. There is a risk of having a stroke. I also met several who had a stroke, due to the surgery. One had the stroke during surgery, one right after surgery. They still had seizures, too.
 
My friends 16yr old daughter died due to it.post Morton said sudden death so no learn much..I have heard more about it lately few people been in paper.
I myself think 1in 2000 is high ratio.One reasons I weaning myself off e drugs how do they know if it e or the drugs.I going try natural route.
My daughter went to boarding school kids with server e it had hospital with intensive care there were kids who in status non stop for days even weeks 99%left school ok.i saw one girl who had the operation it certainly did not cure her but her fits shorter duration and at least one or two a week.In her case operation done save her life
 
seagull said:
One reasons I weaning myself off e drugs how do they know if it e or the drugs.I going try natural route.
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Once the drugs are out of your system, you WILL know. That is why they put one in the hospital BEFORE surgery and take PATIENTS OFF ALL AEDs while undergoing tests.

Once the drugs were out of my system, within 7 days, my seizures started immediately, one after another. That is why I was under observation in the hospital. I would have gone status, otherwise, or worse.


seagull said:
i saw one girl who had the operation it certainly did not cure her but her fits shorter duration and at least one or two a week.In her case operation done save her life
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It works for most folks. It certainly did NOT CURE me! Not sure it saved my life, either.
 
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seagull said:
One reasons I weaning myself off e drugs how do they know if it e or the drugs.
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I think it would make sense that if your chances of SUDEP increase with your frequency of siezures as Cint quoted, then it is most likely tied to the seizures & not the drugs.
 
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In general, I would agree that the chance of getting SUDEP goes along with the degree to which your seizures are uncontrolled so keeping them controlled would seem to be a good thing however one chooses to do that.

The paradoxical factor is that AEDs that are CNS depressants can cause or exacerbate sleep apnea (particularly the central as opposed to the obstructive form). This decreased/interrupted respiration can cause a seizure and/or could be the reason why some people just "don't wake up" from a night time seizure. They basically suffocate.

No, there are not hard stats on this. As with everything to do with SUDEP, it is conjecture and theory but it is one I believe to be true because I know what it feels like to wake up gasping for air after a seizure at night.
 
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