I tend to ramble a bit myself, and when it's in regards to something as intense as that, I don't mind. We're all here for advice and to find someone with a common ground that's pretty difficult to come across.
I had no idea such extensive surgeries were done like yours, but it sounds like your life was basically one seizure after the next... It doesn't seem like much of a life to live.
How much have your seizures reduced to? And what kind of side effects did taking out that much of your temporal lobe AND hippocampus have on you?
I think my main concern is that my seizures are nervous system (autonomic) and cardiac related. I shake like a leaf constantly, often have a resting heart rate of 170 or so, have dime sized pupil... To the point where everyone thinks I'm high on something, and severe insomnia.
I'm just not ok settling with the diagnosis of epilepsy. I had all these symptoms before I ever had seizures and before I was on any meds.
And I think what may be just as frustrating as the symptoms is that because of all of this I cannot get any decent health insurance.
What does everyone else do In regards to that. I lost my job after having a seizure driving and no insurance company will touch me.
Grr
Quote:
Originally Posted by Porkette
Hi Amy,
I saw many different neuros. over the yrs. and found that they couldn't really help get my sz. under control so a friend told me about the brain surgery they started doing a few yrs. ago and that's when I decided to see an Epileptologist, neuropsychologist, and neurosurgeon at an Epilepsy Center to have surgery done. I would have at least 300 sz. or more a yr. and not a single drug was controlling my sz. I had my family Dr. refer me to see an Epileptologist instead of my neurologist and before I had brain surgery I had to have a FMRI, VEEG (video e.e.g. where they did the surgery and put the electrodes directly on my brain,) CT scan, PET and SPECT scan, stress test and the most fascinating test was the wada test. When they found out surgery was okay the removed 75% of my right temporal lobe and all of my right hippocampus. I had to stay awake for most of the surgery and I found it really neat since I enjoy the medical field. I also had to have an angiogram test done and a bleeding test done to make sure that my platlet level was okay. I knew that if I didn't have surgery done to reduce my sz. that they were only going to get worse and when they did surgery on me the found 3 different areas on my brain that were triggering sz. but the test only showed 1 and that's because the damage was to deep in my brain.
To find the right med for yourself tell the Neuro to do a DNA test on you by doing this test they can find what sz. med will work the best for you with the least side effects.
Don't let the Drs. keep adding on more pills because that is often what is triggering sz. for a person because drugs are interacting with each other. I found this out from my pharmacist.
If you have had or are having simple partial sz. they often lead into a different type of sz. I have this kind of sz. also and I get a nervous feeling in my stomach and see colors in my eyes, I have learned that the moment that starts to tighten up all the muscles in my body and make my hands into tight fists and this will stop the sz. Sorry for carrying on so long. Here's wishing you well and May God Bless You!
Sue
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