Epilepsy Talk

Brain Surgery — Questions to Prepare Yourself | April 11, 2023

How many times have you heard: “Well, it isn’t exactly brain surgery.” Well this time it is.

And it’s your brain.

It’s a scary trip into the unknown. Thoughts are swirling around in your head: What will happen to me? Is this the right thing to do? Is this really the best surgeon for the job? What if it doesn’t work? Maybe I should put it off…

It’s really hard to be prepared for something as radical as brain surgery – either physically or emotionally. That’s why it’s important to gather all the information you can, before hand.

Remember: Knowledge is power.

Here some things to consider and ask your neurologist/neurosurgeon team before surgery.

What is the surgeon’s experience with this procedure?

Once you are able to see the surgeon, ask as many questions as you can think of. (You might want to write the questions down first to organize your thoughts and get every aspect covered.)

And consider: Does the surgeon answer your questions in a way you can easily understand? (No medical mumbo jumbo, please!)

Do they rush through the consultation, or give you the time you need? Bedside manner isn’t necessarily an indication of surgical skill, but it is an indication of whether or not the surgeon will give you the time and answers you need to feel secure in your choice.

When it comes to surgical skill, questions like “how many times have you performed this procedure?” are helpful. A surgeon should have performed your procedure enough times to be accomplished and confident in their ability to do it flawlessly.

Also, think about asking whether or not you can contact previous patients who’ve gone through similar surgeries, as references. The surgeon’s answers may also give you clues about his or her level of experience.

What about a second opinion?

Getting a second opinion is very reasonable for surgery. Especially surgery as serious as brain surgery! This shouldn’t be a problem with the first doctor. In fact, he/she may encourage you.

Second opinions can reassure anxious patients (and family members) and make the whole process easier for all involved.

The second surgeon may agree with the initial assessment and recommend surgery. However, there may be alternatives presented that make it worth your time and energy to seek them out.

What is the reason that this procedure is necessary at this time?

Is the procedure being done to relieve pain, diagnose a condition, or rectify an existing problem? Must the procedure be performed immediately?

What are the options if this procedure is not done?

What are the nonsurgical or medical treatments available to help the condition? (Like a VNS.) What will/might happen if the operation is not done?

If the operation is not done at this time, can it be done later? What are the consequences if the procedure is postponed or delayed?

Is this procedure covered by my insurance plan?

Will physician’s fees, associated costs, hospital services, rehabilitation programs, and pain medications be covered by your insurance plan?

Sometimes the doctor’s office staff can be very helpful in answering these questions. If not, call the insurance company directly with your questions.

If you are paying for the surgery yourself, find out the physician’s fees. Does the surgeon provide a clear idea of the fees or do they have a general idea that may or may not be accurate?

The price of your surgery, including operating room costs, lab work, anesthesia and all other fees, should be clear.

What is the anticipated outcome of the procedure?

What exactly are the expected benefits of doing the surgery? How likely is it that these benefits will result from the procedure?

What are the specific risks that this brain surgery involves?

Although the chances of a serious complication are usually low with most brain surgeries, surgery of any type carries risks.

So it makes sense to ask: What are the problems, complications, or conditions that are the risks of the surgery? How common are these complications and the possibility of a negative outcome?

Also, you should seriously consider having a discussion with family members about your wishes in the event something unexpected occurs and you are not able to make decisions for yourself.

Ideally, all patients having surgery of any kind should have a Living Will or Advance Directive completed prior to undergoing the surgical procedure. Actually, everyone should have an advance directive, no matter what their age or medical condition.

What is the recovery process after this procedure?

Brain surgery varies in terms of wound recovery time and length of rehabilitation programs.

It’s very important for you to know the long-term program ahead of time for the best planning. Will pain control medications be necessary?

Also, this should be broken down into the time spent in the hospital for recovery and the time spent in recovery at home.

Many people who undergo brain surgery also need a caregiver.  It’s important to plan ahead for the time you will need assistance at home.

What happens after I am discharged?

Most patients recover quickly after brain tumor surgery and are able to leave the hospital after only a few days. Depending upon your functional abilities after your surgery, physical therapists and occupational therapists will evaluate you.

In some cases, a short stay at a rehabilitation hospital near your home may be recommended.

What are the next steps?

Obviously, surgery does not end once you leave the operating room. A follow-up appointment with your neurosurgeon is vital to discuss the surgery’s outcome, whether further surgery will be necessary and outline the next steps.

Having a well-qualified team in place for post-operative care is crucial. It’s imperative to know what needs to be done after your brain surgery.

Find out which doctor(s) you will be seeing after your discharge for the treatment of your brain tumor. Who can you call if you have any questions or unanticipated post-operative issues?

A good brain surgeon and surgical team will have all these details in place well before the day of your operation.

Also, make sure you understand the discharge instructions. If you have any questions or concerns, now’s the time to speak up.

When to call the surgeon with concerns…

While recovering at home, it is important to know when to notify the surgeon or surgical team of any complications that arise after surgery. Find out who your main contact is. (Even get their mobile phone number if you feel it’s necessary!)

The following signs and symptoms are warnings of possible complications and should be reported immediately: seizure, severe headache, worsening neurological problems, fever or chills, swelling of the ankles, bleeding or bruising, severe nausea or vomiting, and skin rash.

I know it sounds scary. But then again, it could change the quality of your life for the better. Forever.

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  1. Brain surgery is not like other surgical procedures it’s all about location location location where the speech memory and balance are in the brain and where the seizures are coming from. Sometimes surgery is not possible cause there in the same area. But I tell pepper all the time get tested knowledge good or bad is power. I was fortunate my seizures where on the left side and my speech and memory and balance where on the right. I was able to have surgery. But I tell everyone that surgery is a family decision not FB. Gater all the data and make a family decision together ❤️. I had left temp lobe surgery nov5th 1986 36 years ago I am seizure and 35 1/2 year med free. Iam 63 and retired now. I was awake for my surgery I herd the drill and saw I herd them say they removed a 3×5 cm piece of brain towards the end of the surgery I was asked to move my hands and feet. Not everyone is awake for the surgery.

    Liked by 1 person

    Comment by Mark D Geist — April 11, 2023 @ 1:02 PM

    • You’re right, you’re brave and I admire you.


      Comment by Phylis Feiner Johnson — April 11, 2023 @ 1:13 PM

      • I had 2 done in my life time one in 2005 and the other in 2009 and I’m still on meds but have done alot better since plus have a VNS in me still.

        Liked by 1 person

        Comment by Corina Perry — April 11, 2023 @ 2:09 PM

  2. Hi Phylis, excellent questions. I can relate to this like Mark, since i had brain surgery to remove a baseball size tumor. I couldn’t plan for surgery since after a Grand Ma, they found my tumor and noted that it was so big i may go into a coma if i don’t get it operated on asap. I did meet the surgeon and she was a very nice person, I asked her how many operations with brain tumors she had under her belt and she said around 100. So i was satisfied with that answer.

    Also, operations like this normally have more than one surgeon there in the operating room. Maybe because mine was so huge, curiosity set in, or they were students, i don’t know. Well anyway within 3 days of entering the hospital i was being operated on. The day before the operation, they did an operation were they went into my veins and to my brain to cauterize the blood vessels leading to the tumor. They needed me to be awake during this procedure. I think it’s called an embolization, but not sure. The surgeon in her report said it didn’t work well. Probably because of the size again. I had to sign paper, make out a will and all that. I was put under at around 6pm and woke 11ish pm, not sure, but i remember they didn’t want me to go to sleep since they wanted to monitor my mental functionality plus i did sleep well during the operation so was not sleepy.

    I had Mri’s before and after surgery, looked like someone took a big bite out of my brain. Well on my return trips to the hospital for more mri i’d make it a point to get all the information available on my surgery and wait to pickup my MRI scan so i can look at them. They gave me a lot of info, even emails on it from the doctors. I wanted to know as much as i could about my surgery and and tumors. I have all my mri’s on cds, and all the other tests i went thru.

    The way they found it was by doing a CT scan. The ER was tremendous in finding what caused my “faint spell” which is how i referred to it back then, since i didn’t knowing anything about seizures.

    The only reason i went to the ER was because when i told my brother i had a faint spell at work he said call the advice nurse to see what to do. Which is what i did and after telling her she said come to the ER immediately. So i did and i’m sure glad i did, since the regular doc at the time dismissed the headaches i was experiencing as some type of allergy or something simple. But the thing was i never had headaches before. I was having early morning headaches, like every other day. So it was kind of obvious something was not right. This took place back in 2006. The day of my surgery i call as my second birthday. 🙂

    Liked by 1 person

    Comment by zolt — April 11, 2023 @ 2:22 PM

    • And perhaps the anniversary of your surgery is your second shot at having a positive life!

      I’m so glad someone was bright enough to see the light. And grateful that you are here.


      Comment by Phylis Feiner Johnson — April 11, 2023 @ 3:21 PM

  3. Hi Phyllis!
    There is one surgeon in Bulgaria who performs brain surgeries related to epilepsy.
    His only reason for this is an MRI and a video EEG read by an old neurologist. When he offered me an operation, he didn’t answer my questions, he just made me sign a protocol. He did not ask for a second opinion. His answer was “Here I will cut off a bit of the brain and life will improve.” Thus, people are forced to look for surgeons in neighboring countries. Turkey has very good brain surgery and many specialists. A given case is examined by at least 4 surgeons and then it is decided whether they have performed surgery.

    Liked by 1 person

    Comment by Goro Dimitrov — April 26, 2023 @ 2:57 AM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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