Epilepsy Talk

Brain Surgery – Questions to Prepare Yourself | April 19, 2019

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. Hi Pyhlis, Great Article!!

    For me i had no time to consider surgery, my tumor was the size of a baseball and if it did not come out immediately, i would have gone into a coma. Two days after they found it, i was under the knife, they made an upside down horse shoe incision on my left side of my head. A decade later i still have the scares on my head to prove it. I asked the surgeon how many of these operations she had done and she said around 100, so I was satisfied with knowing that. The healing took a few months. I took great care in making sure that the healing would go right, even to the point were i would not sleep on that side of my head. Luckily i had good insurance at the time, if i remember right, the procedure cost something between 200k to 300k back then, with a 5 day stay in the hospital.

    Liked by 1 person

    Comment by Zolt — April 19, 2019 @ 10:53 AM

    • Wow. You certainly did your homework and are all the better for it.

      (Like not sleeping on the side of the surgery.)

      I’m glad the tumor was found and removed in time for you not to suffer any loss of functions.

      I’m equally glad (and I assume you are) that your insurance coverage was so complete!

      Here’s to you Zolt!


      Comment by Phylis Feiner Johnson — April 19, 2019 @ 12:13 PM

  2. I elected to have a lobectomy in 2006. It was either that or isolation caused by seizures from family and friends. The first 2 years was rough as I still had seizures but as my brain healed and rewired they stopped. Recovery included going to graduate school and getting a degree in counseling. I wrote a book titled, “Sailing through the Storms of Seizures; Living with Epilepsy, Recovering from Brain Surgery, and Being a Caregiver.” It provides information about the various types of seizures, my experiences, my surgery and recovery. My doctors reviewed the technical information. It is meant to instill hope and available on Amazon Books and other suppliers.

    Liked by 1 person

    Comment by Jon Sadler — April 19, 2019 @ 12:21 PM

    • Jon, I bought your book from Amazon, I just haven’t read it yet.

      Congratulations on your success and many accomplishments!


      Comment by Phylis Feiner Johnson — April 19, 2019 @ 12:25 PM

  3. I have gone through 2 brain surgery to help control my seizure I would have and the second one did the best.In 2005 and second in 2009. And I first had the Vns to see if would control them and didn’t but now it does .Still on meds to these days.

    Liked by 1 person

    Comment by Corinaperry1977@yahoo.com — April 20, 2019 @ 10:18 PM

  4. This was such a comprehensive list of things to consider. I used to say “NEVER!” to the idea of brain surgery. But after years of seizures, your perspective changes. I opted for laser ablation after a series of inpatient tests showed I’d be an ideal candidate. And it worked for me, I’m seizure- free over a year now!
    Thanks for your dedication. Much appreciated!

    Liked by 1 person

    Comment by Suzanna Price — April 22, 2019 @ 10:18 AM

  5. Had a operation for epilepsy2017.very happy with the outcome. No more epilepsy.

    Liked by 1 person

    Comment by Lance Minnis — April 23, 2019 @ 5:35 AM

  6. YAY!!! No more meds either?


    Comment by Phylis Feiner Johnson — April 23, 2019 @ 9:37 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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