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Patients and Care Partners Share 17 Tips From Their Brain Surgery Experience

Published on August 29, 2023 in Educational Resources, Caregiving

A brain tumor patient gets an IV before his brain surgery.
Julio P. gets prepped for his craniotomy

You just heard, “There is a mass in your brain. We need to schedule surgery.” The thought of having brain surgery can be intimidating and overwhelming, especially when you’re not sure what to expect. In this blog post, find tips from patients and care partners on what might help make the brain surgery process easier for you and your care partner based on their surgery experiences. 

The content in this blog post is for informational and educational purposes only. It does not constitute medical advice. Please speak with your health care team to discuss your particular circumstances before making any decisions.

Tips to Consider Before Surgery

1. Designate a point person to manage communication with loved ones about the surgery. 

“It was really helpful in my case to have my partner be the quarterback for communication,” Dace H. said. ”Set up some rules and some plans ahead of time.”

  • Your point person can post an update to a specific social media account or a CaringBridge page or send a mass text through a group texting service (additional fee).
  • Does your hospital allow visitors for patients having your surgery? If so, how many visitors can you have? Do you want to have visitors? Share your preferences with your designated contact so they can inform people who ask. “For me, being able to see my friends and family after the surgery was so important,” said Taylor G., who has glioblastoma. Others may prioritize privacy during the recovery period. 

2. Determine a point person to navigate requests to help after surgery.

People may ask what they can do to help after your surgery, such as dropping off a meal. Ask a friend or family member to help you organize those requests. There are free online tools that can be used to help coordinate care as well. 

“Pick someone to direct people to who can coordinate all of that for you so your fridge isn’t full of food one week and empty the next,” said Liz P., whose husband Julio has had two craniotomies. “Let them know if you have dietary restrictions. If you are traveling for surgery, give some gift card options for places nearby. I also found an Amazon wish list to be helpful last year when things were bumpy. I put some of Julio’s favorite snacks on there, plus some home physical therapy tools, supplements, etc.”

There are other ways family and friends can help in addition to providing food to the patient and care partner.

“I had friends and family that pitched in to take care of our yard, provide cleaning services, and drop food off post-discharge,” Taylor said. 

3. Pack a few amenities from home. 

A brain tumor patient sits in his hospital bed after a craniotomy with a laptop in front of him.

A soft robe, nightgown, pajamas (should button up front), and a cozy blanket can help you feel more comfortable in the hospital room. Regarding technology, consider bringing a long cord charger for your phone, a tablet, and wireless earbuds. Depending on how you feel after surgery, you may not use technology, but it’s nice to have it available should you feel up for it.

If you use contacts and/or glasses, bring those with you. You will not be able to wear contacts during surgery. For individuals with poor vision, you can request that your glasses go with your personal effects to be available once you’re awake. Bringing your toothpaste, toothbrush, lip balm, pillow, and towel can help make you more at ease.

“I didn’t know I wasn’t going to be able to breathe through my nose after my transsphenoidal surgery,” said Gabe R., who was diagnosed with craniopharyngioma and has undergone two surgeries. “Because I had to breathe through my mouth, my lips were so chapped. My mouth would get so dry that I constantly had to drink water. No one told me I needed chapstick and how much that would have helped me.”

4. If you have concerns about your hair, talk to your neurosurgeon.

Whether your hair will be cut depends on the surgeon and their approach. Unless explicitly stated in your pre-op instructions, you do not need to cut your hair or shave part of your head before surgery.

Stacy Pietrafitta, a neuro ICU nurse and a grade 3 astrocytoma survivor, suggests, “There is no shame in asking, ‘Doctor, what approach are you taking? I want to know how I can save my hair, and I want to get my hair ready. I’d like to braid it or put it to the side. Let me know what I can do.’”

5. Let nothing go unsaid with loved ones before surgery. 

Whether you want to tell a friend or family member what they mean to you or share the emotions you’re feeling about the procedure, speak up.

“Never did I hear the words, ‘I love you,’ so much until I got diagnosed with a brain tumor, and I had to have surgery,” shared Kayla S., an acoustic neuroma survivor and a neuro ICU nurse. “I tell people all the time that now is not the time to withhold it. Don’t let anything go unsaid prior to surgery.”

6. Understand that recovery will be a process. 

Young female home healthcare professional helps a patient get out of bed by using a walker after surgery. The woman is wearing a cap on her head. An iv drip is in the background.

While there may be similarities in how patients recover from brain surgery, each individual will respond differently. Kayla encourages you to ask your neurosurgeon about your possible outcomes after your operation and have a mindset that your recovery will be a process.

“After surgery, when patients come out, there is a lot of self-doubt when they realize what a long road ahead they have,” Kayla said. “You don’t feel like you. I tell patients that the recovery process starts on day one. When they wake up, I say today is your day to recover. But tomorrow, stretch, fall, stay with it, and stay consistent. Believe in yourself because there’s just too much doubt in everything, and the grief can hold you back from believing what you’re capable of.”

Similarly, understand that you may stay in the hospital for 3–10 days, depending on individual circumstances. 

“Prepare that if everything goes smoothly, your loved one might be released from the hospital after a couple of days,” Liz said. “Julio ended up not needing physical rehab after the first surgery and was released two days after his craniotomy. The second time, I think it was 3-4 days.” 

7. Determine your health care proxy and communicate your wishes to that individual.

Before surgery, complete your advance directive forms, including signing a form indicating who your health care proxy will be, to ensure your wishes for medical care are respected and followed. In addition to completing the paperwork, it’s also important to talk to your health care proxy about your wishes. Unsure of where to start? Review NBTS’s key questions to consider when starting this process. You can then share your responses with your health care proxy to help guide their decision making.

“For any surgery or even without surgery, I think it’s important to know what your loved one’s wishes are if things don’t go as planned,” Liz shared. “If they can’t speak for themselves, you want to know what to say for them, and you also want to have documentation saying you have the authority to make decisions. This could be literally being unable to speak — as we’ve had before — or prolonged loss of consciousness.”

Tips for Care Partners to Consider During Surgery

8. Set yourself up with support and resources.

One of many brain surgery tips is to set yourself up with support and resources.

Understandably, friends and family will ask for updates about the patient on the day of surgery, especially if the surgery runs longer than expected. Just as patients need a point person, a caregiver should not feel as though they have to take everyone on themselves. As a care partner, it can be helpful to have a designated point person or people to help share updates with the patient’s support network. 

“Set up a group text with people who can update other people,” Liz said. “I was copying and pasting dozens of text messages, but we have a friend who is very good at disseminating information for us. If we started over again, I would say someone on my side of the family, someone on Julio’s side of the family, one person representing each of our friend groups and put them all in a group chat and ask them to share with the rest of their respective groups of people.”

It’s also important to think about your needs as a caregiver during surgery and into recovery, as it can be a stressful and overwhelming time for you, too. There are resources available to help care partners cope with the unique challenges that arise from caring for a loved one with a brain tumor. 

9. Prepare for a long surgery day that may see delays both before and during the operation.

“Expect a long wait,” said Joseph E., whose wife had two craniotomies. “The waiting is just almost unbearable. I think the surgery was supposed to be 5-6 hours, but things can change. We checked in at 5 a.m., and I didn’t get anything back from the doctor until almost 8 p.m. Expect whatever number they say the surgery should take and add a few more hours because any complications can happen. Expect it to take all day — bring a book or music and take a walk.”

10. Find ways to distract yourself during brain surgery.

Being a care partner during a loved one’s brain surgery can be an incredibly stressful and emotionally challenging experience. Finding healthy ways to distract yourself can help alleviate some of the anxiety and tension you may be feeling:

  • Participate in mindful activities such as meditation, deep breathing, or coloring
  • Read a book or listen to an audiobook
  • Engage in a creative hobby like knitting
  • Bring a tablet, laptop, or smartphone with you to watch movies, TV shows, or play games
  • Take a walk outside (if the hospital can still contact you)

If your health system sends text updates during the surgery to report on the status, you may feel comfortable leaving the hospital to go do something nearby instead of sitting anxiously in the waiting room. 

“Every 30-60 minutes, the hospital would text me to say when the surgery started, that he was doing well, when they were closing the incision, etc.,” Liz said. “My parents and Julio’s mom were with me the first time, and we decided to go do things instead of sitting at the hospital. The team there knew how to contact me, and we didn’t go too far, but the distraction helped the four hours pass pretty quickly versus sitting in the waiting room the whole time worrying.”

Reach out to friends or family members who can offer a listening ear or a distraction. Conversations with others can help you feel less isolated and provide a sense of comfort. For Sarah G., having people sit with her while her husband, Taylor, had one of his three brain surgeries helped distract her during the long wait. 

11. Use a notepad or your phone to jot down notes from the health care team.

When the neurosurgeon completes the surgery and comes out to talk to the health care proxy and possibly family, you may hear terms you’re not familiar with. Writing or typing what was said can be helpful so that you can more accurately share that information with the patient. 

“Doctors are going to give you a lot of information,” said Duane M., whose nearly 2-year-old son had emergency surgery for a brain tumor. “Don’t be afraid to ask them to repeat something.”

Duane also recommended having another person with you when you meet with the doctor after surgery, as you may remember different notes or think of another question to ask.

Post-Surgery Tips to Consider for Patients & Care Partners

12. Ask about what you can do to help with pain management. 

Patients should feel empowered to ask their health care team what can be done to help manage pain after brain surgery, tailored to their specific condition, medical history, and needs. There may be other options available to you, such as ice packs, but it’s important to speak with your health care team to determine the best option for your case.

“One of the biggest things that I emphasize with my patients is non-pharmacological treatment post-surgery,” Stacy said. “Ice packs are your friends. You can get an $8 ice pack for your neck and shoulders with velcro and place it on your incision, 20 minutes on and 20 minutes off like you would a broken leg. You don’t want too much pressure on the site, but you can lightly velcro it so it doesn’t fall.”

13. If you go home on a steroid taper, understand that you may have a rebound headache when you’re done with the medication. 

“I warn people about the headache they might get and not to panic,” Stacy shared. “It’s expected as it’s the steroids coming out of your system. When it happened to me, no one told me that, and I went to the ER.”

Talk with your doctor to learn when and how you should reach out to your care team for symptoms you are experiencing post-surgery.

14. Document your surgery experience.

“Document everything — pictures, notes from visits with the medical team, videos,” Liz suggested. “It’s better to have all of that later and not want it than to wish you had it. If you want a photo of your brain, ask in advance. Julio has one and still shows it to people.”

As Liz mentioned, it’s easier to capture photos and videos at the time of your surgery and choose to delete them later if you don’t want them than to look back and wish you had taken the photos and videos.

“The thing that I really regret is that we never took pictures,” said Brenda K., who was diagnosed with meningioma. “I never saw what the scar looked like or anything right after the surgery.”

15. Care partners, talk to the patient like you did before surgery. 

“Don’t make them feel like a patient,” Stacy said. “It helps with their emotional well-being to feel like there’s some sort of normalcy to their life.”

16. For pediatric patients, bring their favorite toys and shows to help with their routine during recovery.

For Elsa H., who has pilocytic astrocytoma, it was vital for her to bring her favorite stuffed animal to keep her company before and after surgery. 

“With Kevin, he loved to stroll through the hallway in his wheelchair and when he could walk,” said Duane of his son’s 53 days in the hospital post-op. “Kevin always wanted to be on the go! Kevin loved watching Puppy Dog Pals. Kevin loved toy tools and cars in the hospital. We celebrated every victory. Kevin loved having us bedside, holding his hands, and having his feet rubbed while he was sleeping. He would constantly wake up asking for us to rub his feet.”

17. Talk to a counselor. 

Many patients with brain tumors and their care partners find support after surgery by seeing a mental health professional. Unsure of where to look? Check out NBTS’s curated list of available counseling and support resources.

“I went to therapy for about a year after my first surgery experience for various things,” Dace said. “I wasn’t seeing a therapist before my second surgery, but I had started to set the ball in motion. I started compiling lists and doing interviews with therapists before my surgery because I was like, ‘I am going to have to have someone to talk to after this. I just know that.’ So I started doing interviews to find someone that feels comfortable or at the very least a few helpful options.”

Talking to a counselor is a tip for brain surgery from other brain tumor patients.

Surgery and its aftermath can bring about a wide range of emotions, such as fear, anxiety, and uncertainty. A mental health professional can provide a safe and non-judgmental space for you to express your feelings and concerns. They can help you process your emotions and develop coping strategies to manage them effectively.

“I would say this, especially to people going through their first surgery, we don’t know how much our situation is going to impact those around us — our family, our friends, and those who become unwittingly kind of thrust into the role of caregiver,” Dace explained. “We tend to put a lot on them, even unknowingly, and that’s fair. I think it really benefits us all to take responsibility as much as we can for our own mental well-being. And for me, that was a big part of trying to make sure that I had someone lined up to talk to on the other side of my second surgery.” 

Next Up: The Benefit of Second Opinions

In the next post of our blog series about brain surgery, we will address the benefit of getting a second opinion before surgery in situations where it’s medically appropriate.

The content on this website is for informational and educational purposes only. It does not constitute medical advice. Always consult a professional for your particular needs and circumstances before making any medical, professional, legal, or financial decisions.

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