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Answers to Brain surgery questions.
Sat, 04/12/2008 - 23:12Hello everyone,
"What was it like? Do you still have any? How long did it take for you to recover? Were you scared?" These are just a few of the questions that are asked to me on a daily basis.
I am an individual who had a lobotomy to my left temporal lobe at the age of 17. I am 28 right now, have a college degree, fully employed, married, and am seizure free.
Brian surgery is a scary issue for many people. Many thoughts wondering what will happen after the surgery is 100% completely normal!!!
Lets first focus on the positives.
1. Doctor/Clinic is not going to mention to you the possibility of having a brain surgery unless they feel very confident.
2. Many tests are performed on you to make sure the medical team knows the exact pinpoint(s) of where the seizures are occurring.
3. After the seizures have been located and results have been recorded, a team of many doctors will meet and discuss which person(s) can be candidates of brain surgery.
4. Prior to the surgery, another test(s) are usually ran to be on the safe side as to whether or not surgery can still be performed.
As you can see, many steps are taken to make sure that you are a candidate of having the surgery. Like you, the doctor wants to make sure the risk of this surgery is low and the changes of you being better are greatly improved. A doctor will not go this far in the process unless they are extremely confident.
As with any type of surgery there are some risks. Types of risks will be explained to you by your doctor, depending on the whereabouts of where the surgery will be performed. Yes there are some side effects. Since it is the brain side effects can vary from patient to patient. For myself I had some moments of severe depression, anxiety, and memory problems. Family, friends, teachers/co workers, and by far yourself are the key elements in a speedy recovery.
The recovery can take some time. You have partial control of how long the recovery will last. The process will be very slow and possibly negative if little motivation is taken by you or you don't even try. However, the recovery can be more successful as long as you stay committed, keep trying, and never saying, "I quit". Yes, easier said then done, but it is the truth. It is important to push yourself, but not go all out.
I am now a motivational speaker for individuals with epilepsy, especially with surgery. I will be more then happy to answer any specific question(s) you may have. I am here to help you as best I can. I wish everyone the best of luck!!!!
Best of wishes,
composer25
Comments
Re: Answers to Brain surgery questions.
Submitted by Marcia M on Fri, 2008-05-16 - 01:50
Have you been to Cleveland Clinic? My son had his surgery there, although my son is still seizing, it is not the fault of the surgeon or epilepsy team. My son had a 75% chance of seizure freedom with his surgery, which was one month ago. It is still early, he is still healing, so his seizures could still improve. Before surgery he had complex partials, about 10 per day which were about 30 - 120 seconds in duration. Now he is having nocturnal seizures (which are better than day seizures) but he can have 20 or more per night, every night - the same complex partials but shorter, about 5-15 seconds long.
When you decide on the hospital, make sure you ask the chances of seizure freedom, and what the prognosis is for the other percent - there might be a small chance the seizures get worse after surgery, something you may want to think about.
Cleveland Clinic has a great epilepsy monitoring unit and epilepsy team. They won't refer you for surgery if the entire team and board believes you are truely a good candidate. The only complaint I have is the long hospital stay, it took forever for discharge, I think we were there about 3 days too long because of "paper work". Even the nurses were fantastic, and I've seen some pretty nasty ones at other hospitals.
Have you been to Cleveland Clinic? My son had his surgery there, although my son is still seizing, it is not the fault of the surgeon or epilepsy team. My son had a 75% chance of seizure freedom with his surgery, which was one month ago. It is still early, he is still healing, so his seizures could still improve. Before surgery he had complex partials, about 10 per day which were about 30 - 120 seconds in duration. Now he is having nocturnal seizures (which are better than day seizures) but he can have 20 or more per night, every night - the same complex partials but shorter, about 5-15 seconds long.
When you decide on the hospital, make sure you ask the chances of seizure freedom, and what the prognosis is for the other percent - there might be a small chance the seizures get worse after surgery, something you may want to think about.
Cleveland Clinic has a great epilepsy monitoring unit and epilepsy team. They won't refer you for surgery if the entire team and board believes you are truely a good candidate. The only complaint I have is the long hospital stay, it took forever for discharge, I think we were there about 3 days too long because of "paper work". Even the nurses were fantastic, and I've seen some pretty nasty ones at other hospitals.
Re: Answers to Brain surgery questions.
Submitted by Sheri1969 on Wed, 2008-04-30 - 08:28
I had brain surgery back in 1990 and have been asked the same questions ever since. Back then, it was still in research stage and I was part of the research. I was told nothing and knew nothing. I was awake for the surgery and since have had no seizures...I used to have at least 20 a day. I have severe emotional problems now. I think it is best to tell people the truth. It is better to know ahead as begrudge anybody afterwards for not being honest. I tell people the truth.
Jesus Is My Rock, Music Is My Sanity. Sheri L. Adams
I had brain surgery back in 1990 and have been asked the same questions ever since. Back then, it was still in research stage and I was part of the research. I was told nothing and knew nothing. I was awake for the surgery and since have had no seizures...I used to have at least 20 a day. I have severe emotional problems now. I think it is best to tell people the truth. It is better to know ahead as begrudge anybody afterwards for not being honest. I tell people the truth.
Jesus Is My Rock, Music Is My Sanity. Sheri L. Adams
Re: Answers to Brain surgery questions.
Submitted by jkeener on Fri, 2008-04-25 - 10:01
My son is 6 months old and has had seizures every day every hour since Nov. They are very brief 5-10 sec long. He had an arachnoid cyst on his brain and had surgery Nov. 1st to fenestrate the cyst. Two days later he went into seizures. We have been to 3 hospitals and we are finally in Cincinnati, OH where they classified him having retrac. right temp lobe seizures. They are saying he qualifies for surgery and would like to begin working him up. Do you have any resources to infants having this surgery and where the top hospitals are?