Epilepsy Talk

Before you agree to surgery…  | May 18, 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. The big thing about surgery is the testing before. Finding out where the seizures are coming from and Finding out where speech and memory and balance are located. I had left temp lobe surgery my seizures where on the left my other functions where on the right side. So surgery was possible. 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 they asked me to move my hands and feet. I was 27. 3 months after surgery I was sick and I was over medicated. My blood levels where toxic.my dr started cutting back on meds and 3months later off all meds. I have been seizure free 36 years and 35 1/2 years off meds. Today may 18 I turned 64.

    Liked by 1 person

    Comment by Mark D Geist — May 18, 2023 @ 11:01 AM

  2. I recommend Jeff Elias at UVA. It’s true, I’m not seizure free and the RNS device I had put in last year hasn’t made a difference for me, but I still believe that Dr. Elias is an excellent choice. I’ve had 5 surgeries done by him; 3 with my intracranial EEG, 1 to remove my VNS, and 1 to put the RNS device in. I spoke to him 10 years earlier and I just wasn’t ready then. Ultimately, I decided to go for it. Like I said, I am not seizure free and I haven’t seen improvements but I still think I made the right choice. I’m no longer asking myself, what if?

    Liked by 1 person

    Comment by Kelly Falk — May 18, 2023 @ 11:33 AM

  3. If I’m ever told I need brain surgery, I don’t care the quality of the team, my life would not turn out for the better.

    Liked by 1 person

    Comment by Susan Vander Veer — May 18, 2023 @ 12:12 PM

  4. I am the vine, you are the branches. Those who remain in me, and I in thee will produce much fruit. Apart from me, you can do nothing. JOHN 15:5 That verse came to me at the moment I started praying on 4-21-01 about what to do about having brain surgery. Had the surgery on 7-11-01, 2 months before 9-11 happened. THEN I thought the world was ending & all will be okay 2 months later after surgery and I was ready to go home as in Heaven. I still am as things are not much better than 9-11-01. All to say if you do not have God/Jesus guiding you in what you do, you may never know if you did or did not do the right thing. I am 100% sure I did the right thing then & today, as over 18 months ago I started on XCOPRI, & have been seizure free since, as the brain surgery only changed the seizure pattern I was having, as I was told 3 to 5 years ago I needed a VNS, later it was the RNS & then as I asked what other drug i have not tried yet that I can try it 1st, XCOPRI was mentioned & teh rest is history, BUT I still am always watching & being alert of any of those odd feelings I use to get and after taking 150MGS of XCOPRI for 1 year + all is calm with my brain chemistry for now. 18 months it’s been since my last seizure. PSALM 32:8 I will instruct thee and teach thee in the way thou shall go. I will guide thee with my eye upon you. With those 2 verses of the bible, considering that you believe,, How can you make any wrong choices ?

    Liked by 1 person

    Comment by James D — May 18, 2023 @ 3:54 PM

  5. For me, the surgery wasn’t recommended…I insisted. It’s not only controlled my seizures for 22 1/2 years, it kept me on the positive side when I had five surgeries last year for other health issues.

    Liked by 1 person

    Comment by Ed Lugge — May 18, 2023 @ 5:09 PM

  6. I had a vns implant, is that surgery? Inserted about 20 yrs ago but it shot my epilepsy through the roof and had to be stopped. It was finally removed with a local anaesthetic so I heard all that was going on around me, the surgeon was getting tired and my device was an older one taking time, he refused the offer of a chair, he was then talking about a colleague in another theatre who needed his help (not the patient!) and hurried on. 2014 I was to get an MRI as my seizures had changed, I joked with my neuro that it was as well they’d removed the VNS. If I hadn’t joked I might be a fried egg, my neuro took it seriously, went to check my medical notes about the operation but they didn’t exist so I got an X-Ray to check up on it and it showed that the wires in my neck hadn’t been removed. I can’t have any MRIs now, and I need them for other conditions. The rest of the chat was from a foreign doctor who was praising the beauty of N Ireland!! What happens in theatres sure isn’t like what you see in hospital dramas

    Liked by 1 person

    Comment by Miss Gail Barry — May 20, 2023 @ 3:16 AM

    • I also had my VNS removed. There is more risk taking out the wires in the neck than the device itself so mine were also left in. But I can and have had an MRI since. However my VNS placement, and then removal, only happened about 4 years ago so I wonder if there is a difference that makes the MRI possible for me.

      Liked by 1 person

      Comment by Kelly Falk — May 20, 2023 @ 7:52 AM

      • Kelly, I’m really not sure. If the VNS (and/or wires) are still in place, then I think an MRI is out of the question. If it’s just the wires, the scenario could be different. I would definitely ask my neurologist.


        Comment by Phylis Feiner Johnson — May 20, 2023 @ 8:44 AM

    • Miss Gail Barry,

      That’s careless, unprofessional and reprehensible.

      The article below touches upon what happened to you. Basically, it’s about doctors who are distracted (and make mistakes) during surgery.

      Doctors Distracted by Electronic Devices… https://epilepsytalk.com/2021/06/22/doctors-distracted-by-electronic-devices-3/


      Comment by Phylis Feiner Johnson — May 20, 2023 @ 8:34 AM

  7. Phylis and All, I feel I can post here after reading all the comments about brain surgery. I have had 5 of them – foolish, brave, desparate, maybe some of all them. Perhaps a thumbs down after this post. The first was a CyberKnife – painless but ineffective. The second was the more traditional type. Plenty of scars but ineffective. The third was where the surgeon was “batting 1,000” , but he struck out on me and it got worse with more seizures. The fourth was a six hour surgery which turned into 71/2 once he got into my brain. It didn’t work. The final one was the VNS. He wanted me to have the RNS. It didn’t work either even after one year. Now I am going the medical route. I really am bombed out but “seizureless”. The epileptologist is the best in the area. All the other ones are more than two hours away. It’s kind of hard for what I call the “average person with epilepsy on the street” (though there is no such thing) to be treated. Is there really such a thing as an intractable file? I am starting to think so. Oh, my epilepsy type is tonic-clonic when I sometimes will hurt myself but it is only at night in my sleep.

    Liked by 1 person

    Comment by George Choyce — May 20, 2023 @ 1:39 PM

  8. Thank you, Phylis, for your quick kindness. My wife and I for now are going to stay local and work with our only epileptologist and see if the three of us can hit upon some medical solution. Five surgeries we all think is enough. Oh, how I wish I could give some victory story but that just isn’t the case. And that is sometimes what is the reality.

    Liked by 1 person

    Comment by George Choyce — May 20, 2023 @ 3:37 PM

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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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