I am wanting to put an end (or atleast close to) to my seizures.   I would like to be able to have a surgery that can possibly help me.

I have been dealing with seizures for over 20 years.  This is my journey so far.

For the longest time I would go see doctors that thought I was weird when i would explain what i was dealing with.  They would tell me it was headaches or they just weren't sure.  About 16 or so years ago I was told that it might be seizures so I went to a neurologist.  The one I went to did not have my best interest at heart.  He took an MRI and did some tests and immediately said that I had a heart issue.  I ended up having a surgery to resolve the matter.   To this day not even sure if I really needed that surgery since there have been things that have come out against that doctor.  One that was taken care of I was told that maybe I had MS.  Went through multiple tests just to be told I might have MS and would have to take expensive meds.  I knew that didn't sound right and that I didn't have it.  That doctor's practice is closed.  

My next part of my journey was being sent to an MS doctor.  He told me earlier on that I didn't have MS but a seizure disorder.  It was a generic diagnosis but it put on the right path.  I was getting closer to the help I needed.  He continued to see me until my seizures became more frequent and defined.  I was eventually sent me to my current doctor.

 This next doctor was able to say with fair amount of certainty that he thought I had left temporal lobe epilepsy.  That was the first time I had an actual name for the problem I had had for years.  Many tests were done to confirm that diagnosis and prepare me for a surgery that would stop those seizures and free me from medicine.  I was going to have an epilepsy surgery to remove the problem area.  That no longer became an option when it was determined that I would probably lose some speech and some memory.  

My next attempt for making the problem going away was for an alternate surgery.  I had a VNS device implanted.  I noticed pretty quickly that was not comfortable and was causing issues with my speech.  I tried it for a year.  It did help cut down seizures and made them weaker.  However, it became incredibly uncomfortable and i would lose my voice whenever it went off.  I had to wear a magnet over my chest for that year whenever I was working just so I could talk.  Eventually it was no longer an option.  The doctor and I both felt it was causing too much of an impairment.  The device was turned down to the lowest setting but has it going off more frequent.  We're not convinced that the device is being effective at the lowest setting.  I tried medication after medication.  Most made me sick or just haven't worked.

That brings me to this part of my journey.  My doctor brought up this new procedure that would help.  It basically would do what the VNS was doing but it would not interfere with my voice.  It sounds more effective and I would be able to do remote adjustments.  This sounded like a great idea.  I have put that surgery off for a couple of year because of the cost and lost time from work.  The seizures make it hard to build up PTO to cover the time away.  I have been working towards being able to make it all work so i can have it done.  The new thing to help me is called an RNS device.  It would be on my brain instead of in my chest and neck region.

I would like to  not think of the rest of my life being constantly disrupted by seizures so I really feel this is my best chance.  It would be my most ideal. 

The amount of the goal is to help cover the cost of my surgery, to cover the lost wages, to help me continue my healthcare coverage while away from work (since I won't have a paycheck to pay it with).  It is also to help allow my husband a little bit of time to be able to help me out.  The estimated time away from work is about a month.  

Please help me reach my goal.