Before I start, let me apologize for the length of this post. I have a lot of things on my mind and a lot of questions.
I just got home from the Dr today after spending a week in the hospital for seizure monitoring. I went into the hospital last Thurs. After gradually taking me off all of my meds, I finally had a total of 4 seizures while in the hospital so they were able to map out the origin of the seizures. Of the 4 seizures I had, 3 of them came from the left temporal lobe region, which is where they suspected them coming from because of a surgery I had to remove a cyst from that area 16 years ago. However, the eeg showed 1 minor seizure starting from the right side. I now have the option of possibly doing surgery to remove part of the left temoral lobe where the scar tissue is located, depending on the results of additional tests that we have to run yet. The doctor said there is about a 60% chance of success by doing the surgery. He said it would be higher, but because the eeg showed the 1 seizure starting on the right side. I normally have complex partials, but have had a couple Grand Mals. The reason I went in for the extended EEG is because I am currently on 1500mg of Keppra 2x daily along with 400mg Dilantin 1x daily and am still having seizures.
Now for my questions. Has anyone had this type of surgery, and what kind of luck did you have? Maybe I would be more willing to go through this kind of surgery, but I have already had brain surgery once in my life and am scared to death to go through it again (I was awake for part of the first one, so I remember alot of it all too well).
I guess my questions turned into 1, because I can't remember anymore right now. Sorry this turned into a rant, but it feels nice to be able to get this off my chest and in front of some people who are going throug a lot of the same things I am and are familiar with alot of these things. Thank you very much for taking the time to read this and all of the understanding.
I haven't had the surgery but am in nearly the same position as yourself. Upon the recommendation of Tattoo, (hopefully you will meet her soon), I went to see a doctor that SPECIALIZED in epilepsy on Thurs. Based on my eeg they say I've got activity in the temporal lobe, as you have. My monitioring has not been done yet, but should be this month.
Your doctors seem to be going directly to surgery. My new doc said there was a step in between, Venus Nerve Stimulator (VNS). I think that's the right term. It's like a pacemaker for the brain to stop the seizures and goes in the vein vs. brain. Ask your doc about that as you are hesitant about the surgery.
My new doc also said I need to fail on many more medications before we get to that point (so far I've only failed on dilantin). My point is, get some more info from you doctor. I, as well, have already been given the surgery option (but also as the LAST option) and assured that it is highly successful. However, like yourself, I'm not in any hurry to have it. Ask about the VNS. You may like it better. Also, how many drugs have you failed on so far?
Jason, I ahve had the surgery. I asked my doc abt the VNS and he told me that the success rate was higher with the surgery for my type of epilepsy. I have Complex Partial too. The surgery removes the offending mass of cells whereas the VNS hopes to short out the sz activity before it becomes a full sizure. The process is able to progress since the mass of cells is still there. Ask your doc if he feels that the right side is now showing activity because of the Kindling Effect from the left? Seizures can worsen over time if not stopped. The cels that misfire can teach the healthy cells how to seize and the disease gets worse. It makes more sense to me to remove the infected tonsills than to keep taking antibiotics and vitamins in order to prevent a case of tonsillitis. The VNS is a very good device, but it is the better choice depending only on the type and location of the sz. It almost seems like a good idea to consider both options, not either or. The surgery to rid you of the mass of cells causing the problem and possibly even the VNS to control the right if the meds do not stop that. Meds may control that. You do need to know the ability, skill, and experience of the neurosurgeon without a doubt. All of that can be discussed later. Having surgery was one of the best decisions I have ever made. This is important: It is best all round to have this taken care of at as early an age as possible because of the negative effects not only the seizures can cause, but also because of all of the negatives that go along with having epilepsy in today's society. Tattoo
Thanks for the replys. I asked the Dr about the VNS because I have heard of other people on it and he said that they have had about a 10% success rate with it. (BTW, this is all being done at the Mayo Clinic, everyone brags about how good they are, but sometimes I wonder. I guess that is just the skeptic in me.) I was on Dilantin and still having seizures, so my Dr put me on Dilantin and Keppra, which slowed the seizures down, but I am still having them. I guess the biggest reason I am scared about the surgery is because I have already had surgery once to remove a cyst from my temporal lobe when I was 14. I had to be awake for part of the surgery so they could run some tests, so I remember them cutting through my skull and everything. I am going to talk to the surgeon in a week and go from there. Thank you for all of the thoughts and prayers.
I was able to sleep through my surgery. They determined from the WADA where my Speech and Memory centers were located so I did not have to talk to them like you did. Some who have this surgery have to do just as you did, but it all depends on the results of your tests. To make you feel better about the facility, do ask to talk to some of the other patients who have had the same procedure, at the same place, and done by the same neurosurgeon that you will have. Ask how many successful cases your neurosurgeon has logged. Seeif you can find the post called How to Find an Doc or Facility from the website of the Cleveland Clinic. It has very useful questions to ask your team members. Finding out these answers may ease your mind some. Tattoo