I need an understanding ear

[Wiseandmighty]

I have uncontrolled seizures. They have tried the VNS. It has been in gor two years. My doctor told me my epilepsy was so bad I would be lucky to live a year before I got my VNS. I was revived three times in a matter of a year and six months and the lsst one before my surgery I almost didn't make it. They had to shock me back to life. I have been having my seizures again like before. I am scared the surgery was in vain I am terrified I may not have long left.

 

[Nakamova]

First off,

:hugs:

You've got a lot of scary stuff going on. I'm sorry the VNS didn't work out for you. Several CWE members have had mixed or negative results with the VNS, so you're not alone.

Has your doctor talked about other treatment options? I assume you've tried most if not all of the meds out there, but sometimes another med or combination of meds, or a change in dosing schedule can make a difference. Are you considered a candidate for DBS (Deep Brain Stimulation) or brain surgery? Have you tried dietary approaches like the ketogenic diet? (Apologies if you've been through this already; I'm just throwing out things that have worked for others).

Are you confident in your neuro? Maybe getting a second or third option would be a good idea, and generate some new treatment ideas.

Hang in there; I hope you feel free to make yourself at home here at CWE; the members are great and have a lot of support to offer.

Best,
Nakamova

 

[Cint]

I'm sorry you've gone thru so much. I have a VNS and for me, that was my LAST resort. I had a failed Left Temporal Lobectomy. That surgery only made my seizures worse than before. But like the VNS, it works for some and not others. Have you tried? And I've been in several situations where I could have died if someone had not been near to rescue me.

Like Nakamova suggested, have you sought out a different opinion? Are you seeing an epilepsy specialist, an epileptologist? For persons like you and me, that is who we need to be seen by. They can find the best treatment(s) available for us.

Wishing you the best.

 

[Fedup]

Wiseandmighty

You have a lot going on for yourself so its not surprising you are scared, there are a few on here who struggle with controlling their seizures as well. We try everything we can to get some control on our seizures so having the surgery was not in vain, it just means you have to try again. I do not think the doctor should have said to you what he did, I think that was wrong. Like so many more who get it hard to control their seizures, you will try again and again and you will succeed, in the end all this hardship will be something you can look back at and say I beat all this, how wrong can they be.

 

[Porkette]

Hi Wiseandmighty,

Just like you I have many type of seizures absence, complex partial, simple partial, and I've had a few myoclonic and atonic seizures over the yrs. I had surgery twice and I'm thinking about having Deep Brain Stimulator surgery. I've tried over 10 different seizure meds and not a single one will stop my seizures, I just recently started using cbd oil and it has reduced my seizures a little and I've found that they don't last as long as they have in the past.
Before I had my surgery done I got a 2nd opinion from another Epileptologist and neurosurgeon and you may want to consider that. It was a big help to me hearing from 2 different Drs. and I finally found out that the reason why I'm having so many seizures is because I've had them for 44 yrs. and the more seizures that I have had left more damage on my brain. I started out with just a scar on the right temporal lobe but as time went by and I had more seizures the damage spread to the frontal lobe and over the left temporal lobe. This is another reason why I'm having so many different types of seizures also. If you are interested look into the Deep Brain Stimulator or the cbd oil. I wish you only the best and May God Bless You!

Sue