going to have surgery - Epilepsy Message Board

mnsnellers · 09-25-2002, 09:41 AM

After my extended EEG and much thought, I have decided I am going to have surgery again. The doctors said there is about a 60% chance of me not having seizures again. They set the percentage so low because during my EEG it showed some seizure activity coming from my right temporal lobe also even though the majority of the activity and the scar tissue is on the left side. There is about a 3% chance of me having speech problems after the surgery and a higher risk of having memory problems. They are not going to remove all of the temporal lobe, just the damaged areas with a little additional tissue.

I have to admit, I am scared to death right now. The one good thing about the surgery this time is that I don't have to be awake for it like I was with my first surgery. That was one of my biggest fears, because I remember my first surgery all too well, even though it was 16 years ago. How many people get to go through brain surgery twice in their lives?

I don't want to sound selfish, but please keep me in your thoughts and prayers in the next few weeks.

Thank you for listening
Jason MN

Ksavage · 09-25-2002, 12:10 PM

Oh Jason! You are in my thoughts & prayers! I am really proud of you for making this choice. I know that it was not an easy one, but I know that it was the right one for you to make. Thank heavens you will be in "dream land" during this surgery! I could not imagine how hard it would be to have to listen to everything they have to do during an extensive surgery like you are going to have. I am not a candidate for the surgery, but I know that if I was then it would be a very hard choice for me to make, but would be well worth it in the end.
I will be praying for you & add you to our prayer list if that is OK with you.
Keep us posted OK?

Kim

Tattoo · 09-25-2002, 07:56 PM

Hello jason. I can totally understand your fear. I was very afraid before I had surgery. but as you may have read in my postings, I learned the skill and experienceof the neurosurgeon who was to do my surgery and felt more confident in his ability. That did help me a lot. Do ask to talk to your neurosurgeon's former patients who had their surgery done by him. Ask how many times he has done that same procedure and his percentage of successful cases. I asked all of those questions and more. I found that helpful. I was glad that i was able to sleep through the procedure. Are they going to do mapping before surgery to make sure they stay away from those critical areas? That is done in many cases. Have you had the WADA yet? My speech center was on the opposite side so losing speech was not a problem. If speech is on the same side as the surgery, they usually do not allow you to sleep through the surgery. Is your speech center on the same side as your surgery side, left? Only the WADA can tell the docs that. Without the WADA, they only can assume it is on a certain side based on if you are right or left handed, but that is not a guarrantee. The WADA has to determine that. If your speech is on the same side as your surgery is to be on, why are they allowing you to sleep thropugh it. Ask these questions so you will have a better understanding. I do wish you well, and keep us posted. Tattoo

mnsnellers · 09-25-2002, 08:59 PM

Thank you for your reply tattoo. I had a WADA done the last time I had the surgery when I was 14. At that time they removed a cyst which was causing the seizures. The doctor gave me a term for what they were going to be removing, but I can't remember what it is. Just talking to the surgeon gave me some comfort. He seemed very intelligent and he is also a professor at Mayo. I know my speech center is on my left side because that is why I had to be awake during my last surgery. I do know that they are going to be doing a mapping because they are doing that next Tuesday. At that time they will also be putting the left half of my brain to sleep to more effectively determine what that side controls. The surgery is scheduled for next Thursday right now. The surgeon said he did not see any benefit at this time in having me awake for the surgery. I don't know if I would have the surgery done if I had to be awake, because I remember all too well my last surgery even though it was 16 years ago. Things may change between now and then, but that is the plan for right now. There is a 1-3% chance of speech problems as a result of the surgery and a slightly higher risk of memory problems with certain words and names because of it, but I have determined that those chances are very small, and have decided to take those chances. Thank you all for your support and thoughts and prayers.

Jason MN

Tattoo · 09-26-2002, 09:21 AM

Jason, The WADA is when they put half of your brain to sleep to check the sides for speech and memory. Maybe they just want to be sure. Is this the same group who did your other surgery? Most places want their own tests done, and they want to determine the results. I know of no good facility that uses tests from another time and especially not from another facility. he fact that your doc is a professor has nothing to do with skill as a patient care providor. They do not go hand in hand necessarily at all. Professors teach, practitioners do. My doctors need to have a great track record in the area I see them for, Good practitioners with positive results and positive references from their patients. Put no less energy in learning everything about your procedure and Providors than ou would put into choosing a car. KICK the TIRES!There is no way I would let anyone touch my brain without knowing exactly what the procedure is, what exactly it involves, as well as all of what it can possibly cause after surgery since you cannot undo it. It's your life, not theirs.
If you are in the US, the Senate is voting today to decrease the responsibility and accountibility of doctors and hospitals that make mistakes as well as companies that make inferior products that cause injury! True. The article is posted on several other message boards. These folks here do not seem to appreciate the visitors learning all there is to know since no other message boards can be posted. This board has much fewer visitors than other boards. Search for them on Google.com. Is this the same group who did your previous surgery? Be careful. Be very sure/positive about the ENTIRE picture. I refuse to be a sheeple= sheep+people.
That website re the Patient's Right's is [url="http://www.citizen.com"]www.citizen.com[/url] Ralph Nadar is involved with it. I hope that posting that site doesn't get me banned, but there are other boards I post on beside here. Tattoo

[This message has been edited by Tattoo (edited 09-26-2002).]