Surgery option

Sun, 12/30/2018 - 08:37
My doctor has given me 4 options for surgery for intractable epilepsy. Additional resection, I had prior partial TL resection & will not have another as 1 foci is near hippocampus. This leaves 3 options: VNS,RNS, and laser ablation. He believes all have about a 50% chance of reducing my focal impaired/aware seizures. (I am currently on 5 AEDs.) I would opt for the RNS but I have 4 foci and currently they are only able to treat two with the device, he explained the company plans to release a device which is able to treat 4 areas in the future (seems more sense to wait so I’m not sure why this is being included in the options)-Shelving this option for now. This leaves me with: I know nothing about the laser ablation and have seen little on here? VNS is a possibility but since 90% of my seizures of are focal impaired I’m not sure if this is even feasible? If anyone can give me their experience with focal seizures and laser ablation or VNS it would be greatly appreciated.


jenn,Sounds like you have a

Submitted by birdman on Mon, 2018-12-31 - 16:34
jenn,Sounds like you have a rather complicated situation with the four seizure foci.  I had resection and then fix years later I was treated with VNS for five years.  VNS did not stop the seizures but it did seem to change the way I recovered from them; I became more aware sooner.Now I am scheduled for another EEG to prepare me for more surgery.  The doctor mentioned more resection was likely but also mentioned laser ablation could be used.  He did not explain too much about laser for me either and I did not ask as I figure there will be time to ask during my EEG or afterwards.  I don't know much about laser ablation either but assume it must give similar results as resection and maybe safer.  I too am anxious to know more about laser ablation.Given that you are on 4 AED's you must be anxious for some alternative or at least to get those medications reduced.  I can say that doctors removed my right hippocampus in that first resection.  I didn't notice any change in memory or mood.  The amygdala is the only part left in my RTL and that is the part they are thinking of removing.  I have been concerned about the impact on memory and mood that this will have.  It seems many of us will need to undergo multiple treatments and procedures to get the best results.  

Thanks you for you input,

Submitted by Jenn0030_5968b3e028e9b on Tue, 2019-01-01 - 20:20
Thanks you for you input, Michael. I am scheduled for another SPECT during an upcoming EMU visit. I reluctantly agreed since he said he could no longer offer any other medication options and I was as “good as I could get”. Can I ask what type of seizures you have? I am aware fairly quick after my seizures. Being on 5 AEDs my mood can vary by the day anyway. I was given limited info on the ablation other than it was targeted to specific foci (those safe to treat), and safer than surgery. 

I have focal seizures with

Submitted by birdman on Wed, 2019-01-02 - 09:18
I have focal seizures with and without loss of awareness.  I used to have secondary generalized seizures but these only happen now when they take me off medication during my EEG's.  With my focal seizures with impaired awareness there is question whether these arise in the left temporal lobe, or are they starting in the right and then moving to the left.  This is why they are doing one more EEG (the fifth one I've had in my life).  If they originate in the left temporal lobe they will likely implant RNS for managing those seizures.

Previously they believed mine

Submitted by Jenn0030_5968b3e028e9b on Wed, 2019-01-02 - 10:25
Previously they believed mine started in the right temporal lobe. (Mesial temporal), I assume they are re-evaluating as I have had no changes in my seizures.If you’re referring to the lengthy inpatient EEG, I am on about my 5th as well. I lost count the number of times I have an in-office EEG. I hope you get some answers and plans moving forward with your upcoming EEG. 

Yes, it's another inpatient

Submitted by birdman on Wed, 2019-01-02 - 12:35
Yes, it's another inpatient EEG this one will include the depth electrodes.  Like you I don't know the count of my outpatient EEG's.  I had those done more than 40 years ago.

I have somehow managed to

Submitted by Jenn0030_5968b3e028e9b on Wed, 2019-01-23 - 09:46
I have somehow managed to only have the SEEG once. Very similar to you, I have been having EEGs for 30 years. 

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