Epilepsy Talk

Before you agree to surgery… | September 8, 2021

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. Reblogged this on Disablities & Mental Health Issues.


    Comment by Kenneth — September 8, 2021 @ 7:18 AM

  2. This was very helpful and could be used with any surgery. Good job again Phylis.

    Liked by 1 person

    Comment by Flower Roberts — September 8, 2021 @ 2:55 PM

  3. Well, you know I can’t pass this up. Surgery is probably the hardest decision we’ll ever have to make. The key is to weigh out the needs vs. the risks. Check out our experience with surgery. Listen to your doctors but don’t stay quiet.

    Did I need surgery? I came inches away from a fatal car accident but with my job and its location, I couldn’t give up driving completely so I needed to find a safe way to get back on the road again.

    What am I risking? The surgeon told me I have a chance of losing eyesight in my right eye from 12 o’clock to two and I risk a stroke down the right side.

    What do I know about the surgery? I convinced my cousin who, during seizures, had burnt her arm on a grill, burnt her entire body with hot water in a bathtub, that she really needed it before something fatal happened. She’s not doing too well now because of how severe her problem was but she did see four seizure-free years after surgery. I got a list of people who already had the surgery and I called the only man on the list. He misled me when he said it was a traumatic experience and said he had to go. I called back and he became more clear by saying the trauma was from his divorce and that he became a heavy drinker which brought back his seizures. Now I knew the surgery wasn’t the problem. He was the problem.

    My epileptologist wasn’t too anxious for me to have surgery because he felt I had good control of seizures but good isn’t great and great control isn’t total control. I kept calling him after every little feeling I was having until he scheduled my VEEG. It didn’t go too well the first four days but I had two of the worst seizures I ever had on the fifth day and he told me they had enough activity to show it’s coming from my left temporal lobe and I’m a candidate. He then scheduled a WADA test where they found out the left side of my brain where the surgery would be performed controlled my short-term memory and my math skills. He talked about going around the part of the brain that controlled math and I told him, “If it’s part of the problem, take it out!”

    I later had conversations with the epi and the surgeon and learned two things that boosted my morale a lot. First the surgeon told me I had a better chance of dying from a car accident than the surgery. Well, I just had that accident so I should be OK. My epi gave me the odds of success: 95% of better control of seizures, 85% of total conrol ON meds, 70% of total conrol OFF meds. I had the surgery then expected to spend 24 hours in ICU, a week in the hospital and a month-long headache.

    I was out of ICU in 12 hours. My epi’s first question was “What’s the square root of 7450.” Since I knew it was approximately 86.3, I just hoped he didn’t leave a part in my brain that I asked him to remove if he had to. The headaches were gone after two days. I was asked if I wanted to go home after three days but my wife and brother said no, that it was too soon, so I waited another day.

    Trying to remember what I just learned at my job, who I met in the last year were my two biggest post-surgery problems but when you have an eeg six months after surgery and they say there’s no sign of activity, you don’t care about those problems. I was a man who never cried but since they removed my amygdala, I cry about everything. On the brighter side, July 15, 2006 was the last day I took pills to control my seizures.

    I know there’s no guarantees but if you feel there’s no chance surgery would help, I’m ready to say I’m just one of many people who received a second chance at life.

    Liked by 1 person

    Comment by Ed Lugge — September 8, 2021 @ 3:25 PM

    • Wow Ed, Congratulations for your successful journey, going through the surgical procedure to control your seizures.
      Your courageous story is very inspiring to those of us who’re still trying to figure out if brain surgery is the ultimate solution to our neurological disorders.
      Thank you for sharing your experience.

      Liked by 1 person

      Comment by Gerrie — September 8, 2021 @ 11:18 PM

      • Thank you, Gerrie! That’s just what I wanna hear.

        Liked by 1 person

        Comment by Ed Lugge — September 9, 2021 @ 2:28 PM

  4. Ed, you truly are my hero. Despite the nay sayers, the warnings and the no-can-doers, you kept your positive attitude and persevered.

    You are brave, determined and persistent. With faith and truth as your beacon.

    I admire you so very much.


    Comment by Phylis Feiner Johnson — September 8, 2021 @ 4:00 PM

  5. Hello Phylis, I really enjoy your articles.
    I know two people whose brain surgery have negatively affected their mood long term. The seizures have continued to a lesser extent but both people feel that they are now struggling on a different level. As one person said, “I have been two people in my life, the one before, and the one, after surgery”. How common is it to have long-term mood disorders after surgery or is it the result of having no psychological support? One person has been told that she has an ‘acquired brain injury’ after surgery. This assessment was made in passing by a psychiatrist and not a neurologist, neither of whom have taken an interest with the ongoing mood disorder issues despite seizures continuing as well.

    Kindest regards,

    Liked by 1 person

    Comment by Maria Lowe — September 8, 2021 @ 5:33 PM

    • Maria, I just had a long string of bad days mood-wise. I still battle with depression and anxiety. But how can I say I don’t deserve it? As an example, if your engine now runs a lot smoother, does it matter if you’re not getting the gas mileage you used to get? It’s annoying how fast I need more gas but my engine’s fixed.

      I hope things get better for these two people but if they receive better control of seizures, it had to be their biggest goal for surgery. It was mine.

      Liked by 1 person

      Comment by Ed Lugge — September 8, 2021 @ 6:02 PM

  6. Maria, I know of people who have had their executive brain functions nicked during brain surgery and came out worse that before.

    Many of them have benefited from Cognitive Behavioral Therapy, which is a long struggle, but a pathway back to your original self.

    “CBT (Cognitive Behavioral Therapy is a form of psychological treatment that has been demonstrated to be effective for a range of problems including depression, anxiety disorders, alcohol and drug use problems, marital problems, eating disorders, and severe mental illness.

    Numerous research studies suggest that CBT leads to significant improvement in functioning and quality of life.

    In many studies, CBT has been demonstrated to be as effective as, or more effective than, other forms of psychological therapy or psychiatric medications.”

    To find out more, click on: https://www.apa.org/ptsd-guideline/patients-and-families/cognitive-behavioral


    Comment by Phylis Feiner Johnson — September 8, 2021 @ 6:45 PM

  7. I didn’t have much of a choice, it was either i have brain surgery or i die, go off in a coma and die. After a massive grand mall seizure at work, i called the advice nurse and told her i had a faint spell. She said come to ER right away. So i did and after about 3 hrs they found my problem a massive brain tumor the size of a baseball on the left portion of my brain. UGH!!!! When the attending ER nurse told me this, i asked if i could see a picture of it, since this sounded like a cheap B movie to me. So this was a monday at 9:30pm, by wendesday evening i was on the operating table. I did ask the surgeon how many of these types of surgeries she had done, she said 100. I’m here like omg, why couldn’t she of said 1000s. 😦 I should of asked how many died in ur hands and how many were left crippled and how many did ok afterwards. hehehehe. Just kidding. After a few hrs of surgery i came out a okay. I could still count up to 10 in 3 languages. Whew. They wanted to let me go friday evening, but i insisted i should stay one more night. Half of my head was shaven, there was a horse incision there and 44 staples where used to sew me up. For 3 months i did not sleep on that side of my head. 2 months later i was back at work. Like Ed for some reason i also get emotional at times to the point of tears, especially when thinking of death or of someones passing. Never had that problem before either. Not sure why, they did not remove my amygdala. Well with my surgery there where more than one surgeons there. The messed up part of my surgery was i had to wait 3 hrs past the time of the start of my operation because the previous victim had complications during surgery. OMG was my thoughts. But with today’s precision tools and modern technology i was sure i was in good hands. There was one part where the surgeon had problems taking the tumor out, that’s where my seizures start now. So for me another surgery would not solve my seizures, according to my neoro at the time. If it could and they were sure about it, i’d do it again.

    Liked by 1 person

    Comment by Zolt — September 8, 2021 @ 11:54 PM

    • Oh Zolt, how scary. The urgency alone would have had me on my knees.

      I can imagine the questions going through your head. And not a lot of time for answers.

      Delving into the unknown. With hope and a faith that did come true.

      I’m sorry about the seizures. But, I’m so glad you’re still with us.


      Comment by Phylis Feiner Johnson — September 9, 2021 @ 10:13 AM

  8. My situation was somewhat different from others who posted about their brain surgery.

    My nocturnal tonic-clonic seizures were getting so common and frequent that my factual line to my wife was “It will be tonight or tomorrow night that I have another one.” You think that either one of us got a good night’s sleep? When this became routine, we needed to have a detailed conversation about our options. Well, nothing had worked so far – nothing. We had a choice, and we opted to go with surgery. I will spare the details but the result of that surgery was that the seizures got worse – more frequent and more violent.

    Did we have a choice to try again? Yes. We met with the neurosurgeon who basically said that he could offer the most extreme surgery his department (University Hospital) could offer. It would be a team of neurologists locating where the misfires were coming from and then the neurosurgeon making the decision of what to remove. He told my wife and I that it would be a 6 hour surgery. We took the offer for this extreme surgery, because it gave us hope.

    Six hours into the surgery he came out to the waiting room and let my wife know that this surgery was going well but was going to take longer than they had anticipated. I cannot imagine what she was going through at that point.

    I woke up in the ICU with tubes and bandages all over my body and my head shaved. I was a mess. But the surgery did give us hope. Medication was changed or adjusted. The result was that the seizures were significantly decreased though not entirely eliminated.

    All in all, it was worth it. I can now do some basic things independently and even drive. And we’re both sleeping better! Again, it was worth it.

    Liked by 1 person

    Comment by George Choyce — September 9, 2021 @ 2:02 PM

    • Glad to see you didn’t give up, George, and that the second surgery was an improvement!

      Liked by 1 person

      Comment by Ed Lugge — September 9, 2021 @ 2:16 PM

    • George, I have a friend with a similar situation, his initial surgery was totally botched.

      It took him a while to find the right neuro team at the right neurology center (Langone, NYU — one of the best in the country) and they did put him back together again. Albeit, with some seizure activity.

      But the improvement was startling. A new lease on life!

      I’m glad, like you, that he had the courage.


      Comment by Phylis Feiner Johnson — September 9, 2021 @ 2:25 PM

  9. Desperation is a poor motivator, yet it is a motivator. The fact that it had become a literal routine that we knew that two to three violent, throw-yourself-on-the-floor, tonic-clonic seizures had become a part of our weekly pattern was a poor motivator. Additionally, ending up in the ER twice will motivate a desperate couple. I would not suggest that multiple surgeries was an example to follow. But it did work for us in the long run. I was put back together again. As I wrote in my last post, it was worth it.

    My wife and I asked some questions but could have asked more questions; we just held on to the hope that surgery would make me better. It was part courage, part stubbornness, and part naivety that we had the multiple surgeries.

    I really do not remember the questions and that is probably because it seems that part of my memory is just gone. So I make some new ones. My brain still works. It just needs to be rebooted from time to time.

    Brain surgery is a complicated issue. Ask question after question after question. After all, to rephrase Phylis, “it is exactly brain surgery. And it’s your brain!” If you don’t feel comfortable about the responses to your questions or the skill of the neurosurgeon, keep the search going.

    Liked by 1 person

    Comment by George Choyce — September 10, 2021 @ 12:03 PM

  10. I had it starting 2001. The VNS helped a lot! The Neurologist changed settings until it worked the best. The battery was changed after 2 years. The settings were less, the second time. It occurred that way the 3rd and 4th time! Sometimes the VNS were perfect for 2-3 years and the new one I needed adjusting! I really like the product!

    Liked by 1 person

    Comment by Toni R. — September 12, 2021 @ 3:18 PM

  11. When I had my surgery, 1983, talking to my doctor was great but I wanted more. I wanted to talk with someone who had gone through the surgery. This had not been done before. However when I was still in the hospital, I went over and talked to people that were in telemetry testing to see if they would be a good candidate for surgery.
    I wanted them to see what it looked like a few days afterwards,as to dispell any anxiety.So tham that my speech was fine, and things were already improving.

    Liked by 1 person

    Comment by Patrice M Marker — February 18, 2022 @ 1:16 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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