Deciding on surgery

Itr786

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Hi everyone,
I suffer partial seizures of temporal lobe, I've gone through 12 months worth of scan/examinations to establish it I'm a candidate for epilepsy. I'm on the final stretch of that, and I have an appointment to see the surgeon in June.

Those that have had it done, when did you get to THAT point, where you thought enough is enough, and surgery is the only option?...

I'm in a position where I've not been able to control my seizures, even after trying a number of drugs, but my seizures have a certain pattern to them, I'll have a cluster of maybe 5 seizures in 1-2 days, then I'd go without for 2 ish months before they return.

When I've had a period when I've not had any, it brings on alot of doubts whether I should go ahead with it. Then I'd go through a cluster of seizures where I feel I have no options, and I'd want it done.
I have no doubt there's people that have worse seizures than me, and are able to live through them, so I still can't help have doubts about if I'm going down the correct path...

At what point in your life did you feel it was time you had it done? And how do your feel now it's been done?

What doubts did you have at the time when deciding?

I'd also like to hear the thoughts of anyone in my shoes (if anyone..)

Thanks in advanced.
 

Cint

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Those that have had it done, when did you get to THAT point, where you thought enough is enough, and surgery is the only option?...

I'm in a position where I've not been able to control my seizures, even after trying a number of drugs, but my seizures have a certain pattern to them, I'll have a cluster of maybe 5 seizures in 1-2 days, then I'd go without for 2 ish months before they return.
When I decided to have a left temporal lobectomy, I was having 4-5 CP seizures a day for maybe a week- 10 days, then they would disappear until the following month.


At what point in your life did you feel it was time you had it done? And how do your feel now it's been done?

What doubts did you have at the time when deciding?

I'd also like to hear the thoughts of anyone in my shoes (if anyone..)

Thanks in advanced.
When I was having 4-5 CP seizures a day and was a stay-at-home mother with two kids, it was time for me to have the surgery. But that was 25 years ago. I went ahead and took the chance. If I had to do over again, I certainly wouldn't go down that road again! Especially if I was under your circumstances, 5 seizures in 1-2 days. Certainly there are more meds to try?!

My seziures returned 14 months later, not only Cps, but secondary TCs, too as a result of surgery! Plus, I was extremely depressed and have suffered from mood swings ever since. My damaged area is the hippocampus and that also controls speech/memory and I DO have issues with both of those now. I have aphasia and some days I have to keep repeating other folk's names and repeating what was said. SOOOO frustrating!

Anyway, since you asked, just my:twocents:
 

RTL

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I did it and have recounted my thoughts and experiences here:

users.eastlink.ca/~kehoe/surgery/

You'll have to copy/paste the link.

Kevin
 

CQ:)

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Hi Itr786

I've already commented on your other surgery related posts.

But to answer your questions -

At what point in your life did you feel it was time you had it done? And how do you feel now it's been done?
My old neuro suggested in late 2009 that I think about surgery as meds alone weren't helping control the seizures. At the time my neuro mentioned surgery he put me on Neurontin which was 5th med I'd tried over 7 years & it was an add on to Tegretol & Keppra.

I went 2 years seizure free before I started taking focal seizures (simple partials) again but I'm fine with that as they don't affect my life too much.

What doubts did you have at the time when deciding?
I didn't have any doubts or regrets about the surgery, I had/have a great team of specialists involved in the surgery. When i saw the epiologists & surgeon they told me of the pros/cons associated with the surgery. They made sure I was aware that surgery is no way a cure for epilepsy but another treatment to help with the seizures. I was also told that I would most likely still be on meds for the rest of my life but all being well they hoped to reduce my meds.
 

Music36

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My epileptologist tried to persuade me for years to have surgery. I was always afraid to have surgery. But, then I started noticing memory problems in my early 40s and the memory issues just continued getting worse. My epileptologist told me the seizures were doing the brain damage and it could just continue getting worse as long as I continue having seizures. I was also told that other parts of my brain could get damaged from seizures and I could start having seizures start in other parts of my brain. My MRI and PET Scan showed that my left Hippocampus which controls verbal memory had severe atrophy. It had shrunk about 50%. It couldn't do it's job right anymore. So, what I was afraid of surgery doing the seizures did. The memory problems is what motivated me to finally have surgery. The other thing that motivated me is I was told about MRI guided laser ablation surgery which is what I had last summer on my left temporal lobe at age 47. Most of my left Hippocampus and Amygdala were removed. It's less invasive than a traditional lobectomy so there's less risks. Personally, I still dealt with a lot of the same side effects as a traditional lobectomy but it's different for different people. I definitely feel it was worth it though and I'm glad I had the surgery. It's been nine months and I have not had a complex partial since the surgery. I did a lot of research online including asking others like you are doing and I asked my surgeon a lot of questions before making my final decision. Another thing I thought about in making my decision is what it would be like to be having seizures when I get older (like in my 70s). If you don't mind me asking, what is your age? Also, which surgery will you be having?
 
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Itr786

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Just to revive this thread, after going to see the neurosurgeon afew days ago, talking through the options, and getting his viewpoint, I've decided to go ahead with the surgery. I was able to book it in immediately for the 24th February 2017.
It's a 6 hour operation, all being well, 5-7 days in hospital.
According to the surgeon, I'd have around a 70% chance of being seizure free after the procedure. There's always risks involved, and I'm fully aware nothings certain.
I'll try keeping people on this forum updated with my progress. :)
 

CQ:)

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Good luck with the surgery Itr
February will come around before you know it. I hope the surgery is a success for you& helps control your seizures better
 

txtiger

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Itr, I wish you well with your surgery. I hope it controls your seizures.

I'm a little late to this thread, but I had surgery a little over 10 years ago. I'd been living with complex partials for over 10 years at that point. I'd have one every so often, be fine enough to start driving again, then have another. I certainly counted myself luckier than many, but after finding an epilepsy community online, finally found an epileptologist and went through the testing, and found I was a candidate for left temporal lobe surgery. It was from him that I learned that once you fail on two meds, your chances of having your seizures medically controlled are about 5%.

I had the surgery when I was 34. I went seizure-free for over 3 years, then started having occasional breakthroughs, but they were simple partials. About 2 years ago, I started feeling an uptick in the breakthroughs, and had a doozy of a cp last December. We've played with my meds, still have had a couple of breakthroughs, but sps.

I do not regret having the surgery. Even though it did not eliminate the seizures, they are different, and I am aware when I do go through them. I don't know that my life would be what it is today had I not had it. I do regret not being more proactive in reporting breakthroughs, which I have changed since that complex partial last year.

Again, I wish you the best with your surgery. I hope that 10 years from now you'll be able to say you no longer have seizures!
 

Music36

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Good luck Itr! It's almost 16 months since my surgery. I just have occasional auras now. My surgeon had told me that my surgery would take 5 hours and it end up taking 7 hours. But, hey, I'd rather they take their time and do it right. I was told they were having some difficulties with getting the laser perfectly aimed, but eventually they got it. I guess my brain was giving them a hard time.
 
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Nakamova

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Good luck! I hope it's smooth sailing when the time comes.
 

Porkette

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Hi Itr,
Good Luck with your surgery I found it was well worth it and I'm sure it will be a great change for the better for you!
I have temporal lobe seizures along with complex partial seizure. I decided to have a right temporal lobectomy done a few yrs. ago because my neuro and neurosurgeon told me that my seizures were so frequent (300 a yr. and no meds were helping.) that it was causing more damage on my brain. It just started on the right temporal lobe but then it spread to the frontal lobe and over to the left temporal lobe. Every month I have seizures for 2-3 days if not more and that's after surgery. I knew that if I didn't have surgery done things were only going to get worse and the seizures would be more frequent.
After surgery my seizures were reduced 50-60% and I take a lot less med.
I'm a lot happier, I don't get the headaches or feel tired after a seizure and I'm much more independent. Wishing you only the best and May God Bless You!

Sue
 
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