Hi Everyone,
It really amazes me now how many people were like me just months ago, trying to make the decision about the epilepsy surgery and thinking about what to do.
Everyone's experience with surgery is different and here is what happened to me:
I discussed the option of the VNS seriously with my doctor first as I was convinced that, after 24 plus years of complex partial seizures it would be the fastest and least risky way to solve my problem. I did a lot of research and decided against it. I have been on so many combinations of meds I lost track long ago. I'm sure most of you can relate. My doctor said, "I've never lost anyone due to the surgery, but I've had two people die directly related to their seizures. Let me know when you're ready to have the surgery."
When I was finally ready, mentally and due to the fact that the side effects of the drugs were intolerable, I was ready to begin the surgical workup. I had a known lesion, a cavernous angioma, in the left temporal lobe. I went into the hospital for a vidio EEG and after the 3rd day of no meds and no sleep, I had a seizure. My doctor came in afterwards and said, " let me show you what you look like when you have a seizure." So I got to see the video and the EEG. It was an eye-opener. I wanted to sign up for the surgery right then and there.
I didn't however. I did some careful research to find the right doctor. I contacted what I found to be the best doctor for my condition. I was in his office 6 months later discussing the surgery. I would have an incision just 4 inches long instead of the usual sickle-shape. He explained more surgeons were doing this improve the cosmetic appearance and helped with healing. He would remove the entire anterior temporal lobe as well as the angioma.
The day of surgery I hugged my family and the last thing I remember was seeing the operating microscopes attached to the ceiling as I entered the operating room. The next thing I remember was waking up with a terrific headache and my family looking at me saying, "Glenda! You're OK!" I immediately asked, "When are we going into surgery?" I was confused from what I remember and I don't remember much of that first day.
The second day was much better. I still had a terrific headache, but someone had removed the bandage. My memory was still patchy. I got a language battery to make sure I understood what was being said and that I could answer questions. Thank goodness that went fine. It was then that I noticed a funny defect in the upper right part of my vision. It was way high up and seemed to move a little, like a black and white American flag.
The third and fourth day were progressively better. I felt relieved I didn't forget the most important things like the people I loved. My doctor said I would't lose my long term memory, but I wasn't going to count on it until I saw my kids and husband.
I went home on the fourth day a little wobbly, but I figured I could recuperate at home better than the hospital. My incision looked pretty good for a person with a piece of their skull removed and titanium screws to hold it back together.
To make a long story short, my recovery has been gradual and progressively better. I feel stronger all the time. I feel my short-term memory is returning to normal. I still have headaches, sometimes severe, and fatigue, but I accept this a part of the healing process. The thing that has made it worth it is, I HAVEN'T HAD ANY SEIZURES. I hope they don't return. The surgeon says I have a greater that 70% chance. It's way better than the less than 5% with just meds.
So, that's my story in a nutshell. Hope it helps those that need it,
HUGS, Glenda 