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Porkette

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Hi Folks,
Since I've had my 2 brain surgeries things were going well but then my parents got a divorce after 41 yrs. of marriage and now I'm right back to where I started having over 70 seizures a yr. most of them absence and complex partial. The DNA test I had shows I'm drug resistant to all seizure meds and I've done the ketogenic diet which helped a little but I can't stay on that anymore so I'm stuck. I have more brain damage than before I had the surgery with 2 bi lateral lesions on the right and left temporal lobe and damage on the frontal lobe. My neurosurgeon told me he can't do anything more for me. I'm not looking for sympathy I was just wondering if anyone had any ideas since I'm right back to square one. Thanks for your help and time and May God Bless You!

Sue
 
I was in to see my epileptologist this week since I am still having seizures. I had a left temporal lobectomy back in 1990 and was only seizure-free for 14 months. So they were thinking of another brain surgery for me, but the MRI at the time showed that the damaged area was too deep in my hippocampus, so we didn't go there. The seizures were much worse for me AFTER brain surgery!! We tried many more drugs. In 1998, I had my first VNS(Vagus Nerve Stimulator) and since then I've had three battery replacements. I'm still having CPs every couple of months. Now my dr. has ordered another MRI to see if I would be a candidate for the Deep Brain Stimulator. I'm not so sure about having my head sliced open again, tho. I will have the MRI just to see what is going on.

Have you considered the VNS or the DBS?

http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns

https://www.youtube.com/watch?v=kaThzeghWnM
 
Hi Cint,
I'm sorry things didn't work out for you. Yes, I have looked into the VNS and the DBS but according to my neurosurgeon neither of them will work because I have damage on both sides of the brain. I had my surgeries done in 1990 and in 1993 the first surgery was a veeg where they put the electrodes directly on my brain and then in 1993 they did the right temporal lobectomy and took out 75% of my right temporal lobe and all of the right hippocampus.
I am very interested in the DBS the only thing I don't like about it is that it can only cover 1-2 areas of the brain depending on the matter and they have to program the stimulator every so often along with changing the batteries. I have a cousin who has one but it was used for back pain and he played it smart and has the stimulator on the outside of his body so it's nothing when it comes to changing batteries.
I wish you only the best and May God Bless You!

Sue
 
Porkette said:
I am very interested in the DBS the only thing I don't like about it is that it can only cover 1-2 areas of the brain depending on the matter and they have to program the stimulator every so often along with changing the batteries. I have a cousin who has one but it was used for back pain and he played it smart and has the stimulator on the outside of his body so it's nothing when it comes to changing batteries.
Click to expand...
The same with the VNS. I've had my battery changed THREE times now. And It has bee programmed several times so my seizures would be better controlled. Now it is programmed to stimulate every 7 seconds.

And like the VNS, the DBS stimulator is implanted in one's chest. How else are they gonna change batteries?
 
Hi Cint,

As I mentioned my cousin has a DBS for back pain and his Dr. didn't put the stimulator inside his body he had a small cable hooked up to it and he can clip it on the outside of his pocket so when he has to change the batteries he doesn't have to go through surgery. I don't know who the Dr. was that did this but if I were to get a DBS that's the way I would want it also. Here's wishing you well and May God Bless You!

Sue
 
I have damage to both sides of my brain. Not because of surgery but that's how my neuro described where the problems in my brain that were causing the seizures. He said I was unable to have brain surgery because of this.

I was having at least 15 bad seizures a month, usually more. I tried tons of different meds, nothing was really helping, and after 5 years he suggested getting a VNS. It took some time to figure out what meds and dosages to take and the settings of the VNS. He still might change both now every so often depending on what's going on. He's usually decreasing my meds because he'd like to try to just use the VNS instead of both. After 7 years I had to get a new battery. Depending on the settings of the VNS - if it's set to go off frequently the battery will run out faster and if the settings are low then the battery will last longer - will depend on how long you will be able to go before it will need to be changed.
 
Hi valeried,
I'm sorry to hear that you have damage on both side of your brain like I do. I have any where from 4-10 seizures in the spring and summer but come time for fall and winter I will have 1--5 seizures if not more. My Epileptologist told me it's do to the lack of serotonin in the fall and winter. Just like you I have tried many different seizure meds at different dosages and nothing works. I had a DNA test done to find out I was drug resistant to all the seizure meds out on the market right now.
I've looked into both the vns and dbs but my neurosurgeon told me it won't work do tot he fact I have to many areas on my brain that are triggering seizures so just this May I was put on cbd oil (medical marijuana) that helped a little but I think I may need to increase the dosage and of course my insurance won't cover the cost and the taxes on it are sky high in NY. I wish you the best of luck and May God Bless You!

Sue
 
There are many people on here who have said that the changes in the seasons effect the number of seizures they have. Hopefully they might be able to give you some advice about that.

Taxes suck and I know that and the help the insurance companies give you for paying for things is just GREAT! I pay around $200 for one of my meds and that's with my insurance covering some of the cost! I hope that the cdb oil starts helping!
 
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