Risks and Death Rate for Epilepsy Surgeries

Hello everyone,

Happy Thursday! I am writing quickly from my iPad just to give an answer to a question that I seem to be getting every 5 minutes in my e-mail inbox since I declared my upcoming brain surgery.

What are the risks and/or rate of DEATH for Epilepsy surgeries?

"No surgical procedure is risk-free. An operation for epilepsy is major surgery, and the potential risks include those of any major surgery, those of brain surgery, and those pertaining to epilepsy surgery in particular. Any major surgery carries the risk of unexpected reactions to anesthesia or medications, or other unexpected events which may cause major injury or death. The experience of many surgical centers over many years shows that the risk of death from surgery for epilepsy is less than 1 percent, and the risk of stroke or coma less than 2 percent. While these numbers mean that the risk of epilepsy surgery is extremely small, it is not zero.

Additional risks of bleeding or infection, or re-operation for a complication such as a blood clot, also exist and affect about 2 percent of patients, although for Phase III electrode placement the risk of infection is slightly higher at 5 percent. These complications are usually easily treated. Any brain surgery carries risks of damage to nerves or blood vessels, which may cause stroke or neurological impairments that may be either temporary or permanent. The risk of such complications, while very small, varies according to the type of procedure and is different for each individual. Finally, surgery for epilepsy carries a risk of failure, that is, continued seizures. This risk also varies according to the type of procedure and the cause of the seizures and is different for each individual.

Thus, although surgery for epilepsy is among the safest and most effective types of brain surgery performed, the risks involved should be carefully discussed by the patient, his or her family, and the surgeon. A decision to proceed with surgery must be based on a clear knowledge of the potential benefits weighed against these potential risks. No one should agree to this or any other surgical procedure unless he or she is satisfied that all treatment options have been considered, and that all questions regarding the procedure have been answered as fully and accurately as possible." - Epilepsy Surgery Program - Feinberg School of Medicine

Other Risks - From Mayo Clinic

Your risks may vary, depending on which variety of epilepsy surgery is used and the portion of your brain involved:

• Memory problems. The temporal lobe handles memory and language functions, so surgery on this part of the brain may cause difficulties with remembering, understanding and speaking.
• Double vision. Temporary double vision sometimes develops after temporal lobe surgery.
• Increased number of seizures. Corpus callosotomy — severing the neural connections between hemispheres of the brain — stops seizure activity from spreading throughout the brain, but it doesn't stop the seizures. In fact, it can sometimes increase the number of seizures you experience, but they should be less severe.
• Reduced visual field. Hemispherectomy, or removing the outer layer of half the brain, usually results in a reduced visual field.
• Partial, one-sided paralysis. After a hemispherectomy, you may have limited ability to move on one side of your body. Intense rehabilitation often brings back nearly normal abilities.

Some cases, such as mine, are different. The risk can be higher. This depends on pre-existing conditions, areas in which the seizures are originating from, etc. If doctors feel your risk is too high, often you will be declared inoperable (not a candidate).

There is a reason for the many tests done prior to surgery. Such as the Wada Test, MRI's, PET's, SPECT Test, Video EEG's, in-depth brain mapping, Neuropsychological and Psychiaytric Testing, etc. (Click HERE to learn more about pre-surgery testing). If one or more of these tests shows your doctors things that might get in the way of a successful surgery, or that you may not have a good recovery, you will most likely not be operated on.

But like I mentioned, there are cases where the death risk/rate is higher. Your doctor and surgeon are both required to tell you this information and I do not doubt for a second that they will fail to do so. If they forget to answer any questions, PLEASE, ask away. As a patient you need to have your questions answered so that you know you are making the right choice for yourself and your situation.

I simply advise not to be scared. It's hard, and I have trouble not being scared myself. I have this awful fear that they will put me to sleep and I will never wake up after the surgery, or that I will wake up brain-dead. Unfortunately, that is a risk for anyone. But doctors will not operate if they feel it is extremely likely to happen. You are under good care, and you have doctors who value your life extremely. (If you disagree, PLEASE find yourself another set of doctors ASAP!) They will only give you this surgery if the benefits outweigh the risks... and they must outweigh them by far.

Know that the fact that you are a candidate means that you are in good shape already! Just as crimes are presented to a court, your case of Epilepsy has to be presented to an entire room full of doctors and they all have to consider whether you are operable or not. Once all your tests are finished, the results from every test along with your story, brain scans, etc. are given to each doctor and surgeon who will be on your team. Often, there are even more doctors to help decide as well! This surgery will not be taken lightly by any of your doctors.

Since I know that even this news is not enough to calm your fears, I have some tips below to help you get through the process of making the choice to get surgery and waiting for the surgery. I'm not going to lie! I cried like a two year old yesterday morning at the thought of getting surgery, but my boyfriend reminded me that it is for the better and he is completely right. He said "I know baby, but it is time to get you healthy so you can live your life again." So with that embarrassing fact being admitted, I hope you can trust that this whole article is from my heart and so are these tips!

1. Make a list of your goals for the future - Pretend like this surgery is not a big deal. (Don't get me wrong, though. Take it seriously in the doctor's office, but when you're at home awaiting the day to come, you must come to terms with it.) Make a list of things you want to do after your surgery that you could never do before. Maybe you want to get a driver's license or your very own car... Maybe it's something simple like painting a self-portrait or seeing a movie that is coming out. Make your list as long as you'd like, and have faith that you know that this surgery will not get in the way of these goals!

2. Talk about it - Holding things in is never the right thing to do. I have personally made the mistake of doing this a lot at home and it only made my life harder. If you are like me, and your family is too overwhelmed to talk when you need to talk, consider speaking to a friend or attending a support group at your local Epilepsy Foundation center or hospital. If there isn't one close enough to you, try starting a blog like me where you can share experiences with the world and get others opinions. Tumblr.com is a fantastic place to start if you have never blogged before!

3. Keep a diary - If you're worried about memory loss, or maybe just want to get some things off of your chest in private, a diary can be the way to go. (Or a blog, like I mentioned). Make it a goal to write everyday, and be as detailed about the events of your day and your feelings. If you do forget some things after surgery, it will all be in your diary! Do note that memory loss is usually more of a short-term memory loss and doesn't usually mess with past memories. This is only to help you stop worrying about this issue.

4. Take pictures - Another great way to get the worry of memory loss of your chest. It can also keep you quite busy and keep your mind off of the surgery in general. Make a photo album or print your pictures and keep them in a box!

5. Stay positive - Staying positive is important. If you focus on the negatives it can ruin your whole day. Make it a goal to say as many positive things as you can each day, and watch how it brightens your whole outlook on life! Getting a Positive Pin may be a great place to start!

6. Stay busy - Stay as busy as you can. If your Epilepsy still permits you to be active, try taking a walk with a friend each day and just talk. At home, keep yourself busy with chores and hobbies that you love. Maybe you are an artist like myself, or maybe you love to cook. Do things you love to keep your mind off of what scares you.

7. Buy yourself a gift - For those of you who already have their surgery planned, buy yourself a post-surgery gift. Something for you to enjoy that lets you know that you are awesome and that you made it through one of the hardest things in your life! Something that says "Bravo! You got part of your brain removed and you are stll awesome!". Make it something that you have always wanted. This is also a great thing that friends or parents can do for their friends with upcoming Epilepsy surgeries.

8. Ask questions - Knowing the answer is better than wondering. If you have questions, ask your doctors. I have an awful habit of forgetting to ask, so as soon as I remember one of my questions I write it down in my little blue notebook to ask at my next visit OR I simply call my doctor's office.

9. Don't be sad - It's hard, and it isn't always possible. You will get scared or sad from time to time. I always like to remind myself that time flies so fast. I don't want to waste precious moments of my life crying or being angry. Life is such a blessing, so why not smile whenever possible?

Good luck to all those brave people contemplating surgery! I hope this article has helped somewhat. If you liked it, please share it with others who may benefit from it and if you have any tips you'd like to add or questions about brain surgery for Epilepsy, e-mail them to MandyKrzywonski@EpilepsyBlogger.org. God bless!

EpilepsyBlogger
Mandy Krzywonski