Epilepsy Surgery: A Success Story

[bellaloma]

When I was 22, I was in a state of near-constant seizing. It was terrifying, but I opted for surgery to control my seizures. I wrote an article for MTV about it - I encourage you to check it out.

It's called "Leap Into The Unknown" on the MTV Voices UK website (though I am Canadian and had surgery in London, Ontario.)

For all the stigma attached to brain surgery, there is so much hope in it.
Absolute best of luck to all.
Carly
:brain:

 

[epileric]

How long ago did you have the surgery?

 

[crazychick]

surgery

Does this surgery work? if so what did u have to have done etc?

 

[bellaloma]

I had the surgery in May 2010. The surgery is called a right temporal lobectomy. I spent weeks in an epilepsy unit, monitored by a continuous EEG, to determine where in my brain the seizures originated. I was lucky: mine seemed to originate from the same place, in my right temporal lobe. That made me a candidate for surgery.

I was put under general anaesthesia. The right side of my skull was cut out (about 4"x2", above my right ear). The front part of my right temporal lobe was removed.

I will never, ever regret getting that surgery. It gave me my life back. It has an 80% success rate - that is, a major reduction or elimination of all seizure activity - and the risks are relatively low.

 

[crazychick]

Bellaloma this does work then? it sounds frightening likr. I havent had a seizure med free ova a year now touch wood but i do worry if im goin to have another 1.

 

[bellaloma]

It did work for me, yes, and I've spoken to other patients who have been completely seizure-free since surgery. It is not a cure, though; it is a treatment. There are no guarantees.
If it helps, I'm the same person after surgery. My intelligence and personality didn't change. Every seizure damages brain tissue, and the part of the brain removed during surgery had been damaged to the point that I was no longer using it; my surgeon might as well have been removing fluff from my cranium.
Surgery is a very unique thing, though, and I think it should be considered only if medications don't offer seizure control.

 

[Cint]

I was lucky: mine seemed to originate from the same place, in my right temporal lobe. That made me a candidate for surgery.


I will never, ever regret getting that surgery. It gave me my life back. It has an 80% success rate - that is, a major reduction or elimination of all seizure activity - and the risks are relatively low.

You are lucky!! I wish I could say the same thing. I had a left temporal lobectomy and was seizure-free for only 14 months! And do I ever regret having the stupid surgery. It not only made my seizures worse, it made the depression worse, memory worse, and overall life...... :bigmouth:. It took my life from me as I knew it before surgery. And there are risks... memory loss, stroke, aphasia. I guess I'm in the 20% group.

 

[bellaloma]

I'm so sorry to hear that. I truly am lucky; right temporal lobectomies are more favourable than left. I have poor short-term memory, but it was just as poor (or poorer) before surgery. I also had third nerve palsy (a paralyzed right eye and severe double vision) for about a month after the operation, but that resolved itself. I have had some seizures since surgery, and I now have daily auras, but I do have a very large (and growing) tumour. The situation in my skull changes daily.

 

[stormydys]

I am happy your surgery worked out for you, I have been in for testing twice for brain surgery but I can't follow through, it scares me when I am losing my brain cells during these tests to the point of who I am or where I am at? Then I go home after playing guinnea pig and hate life for a year.

 

[CQ:)]

Hi Bellaloma,

That is great that you surgery worked for you. Have you been taken of any of your meds or had them reduced since the surgery.

I had left temporal lobe surgery in March last year, I had a really good recovery after my surgery & have been seizure free since the surgery. I am due to go back to see the neurologist & neuropsych in March for my 12 monthly review. At the moment I am on Keppra & Tegretol but when I see the neurologist in March they're going to slowly take me of 1 of the meds.

Like you I don't regret having the surgery because I have noticed some positive changes since the surgery .

 

[bellaloma]

Hi CQ,
My surgeon likes his patients to remain on the same pre-surgery cocktail of medications for at least a year post-op. I'm slowly weaning off medications. Currently I'm taking 1000mg Keppra and 10mg Clobazam twice daily, 300mg Trileptal at night, and I've weaned down from 350mg Dilantin to 100mg Dilantin at night. This coming Monday, I'll drop the Dilantin to 50mg. It's an ongoing thing - but I'm slowly needing less and less medication.

 

[CQ:)]

Hi CQ,
My surgeon likes his patients to remain on the same pre-surgery cocktail of medications for at least a year post-op. I'm slowly weaning off medications. Currently I'm taking 1000mg Keppra and 10mg Clobazam twice daily, 300mg Trileptal at night, and I've weaned down from 350mg Dilantin to 100mg Dilantin at night. This coming Monday, I'll drop the Dilantin to 50mg. It's an ongoing thing - but I'm slowly needing less and less medication.

Hi Bellamola,

Yes the specialists at the hospital where I had my surgery also prefer to wait until 1 year after the surgery before they think about reducing the medications.

There is a chance that it will most likely be the Keppra that I will start to gradually go of, but I won't know for sure if it is the Keppra & how much the neurologist will reduce the medication until I see the neurologist in March.

The specialists are hoping that eventually I will be able to only be on 1 medication but a lower dosage but as you would know that all takes time.