Getting ready for brain surgery is difficult because there is not a specific type or length of recovery – each person’s recovery is a unique experience. It is good to prepare for the worst case, but hopefully, you will find that your recovery is much easier than you expected.
Below are some suggestions to consider if you do have time to prepare ahead for your surgery.
Months/Weeks Before Surgery
Find the best neurosurgeon possible
Take time to research, get referrals, and interview multiple neurosurgeons. Finding the best neurosurgeon for your surgery is the most important thing you can do. Make sure your neurosurgeon has the best qualifications for your particular operation and that you feel comfortable talking to them. Prepare a list of questions to ask during your appointment with the surgeon.
Prepare family and friends
Make sure your family and friends are ready to help with your recovery. Give them specific duties ahead of time, so there is no confusion about who is doing what. For example, who is going to drive you to the hospital and follow-up appointments? Who is going to take care of the children? Who can prepare dinners or go shopping? Try to divide the duties so that one person is not taking on too much while still ensuring all your loved ones feel they have helped.
Prepare your employer
Talk to your employer about how to prepare for your absence, including both short- and long-term scenarios. Also, find out if your employer is willing to accommodate modified duties upon your return, including part-time hours, working from home, light physical responsibilities, etc.
Check with your medical insurance provider regarding any out-of-pocket costs that may be associated with the surgery and make sure you have the necessary pre-approvals. Find out about disability benefits in your state in case you are not able to return to work right away. Also, try to make sure all your bills are up to date before surgery. If possible, have bills set up on automatic payment, so this is one less thing you have to worry about during your recovery.
Some hospitals require payment before booking. Ask for a written estimate that covers all anticipated costs such as MRIs, surgical fees (may be separate), and hospital fees. Some of these fees are usually approximate as every patient’s surgery is different.
Prepare an Advanced Directive
Before your surgery, you may want to consider drafting an Advance Directive to specify your medical wishes in case you are unable to communicate them yourself. You may also want Powers of Attorney to give someone access to your protected medical information or to make financial and legal decisions on your behalf. Thinking about worst-case scenarios before facing surgery is challenging; however, designating someone you trust to be in control of your medical choices can bring peace of mind. An attorney can help prepare these documents.
Week/Days before Surgery
- Prepare your hospital bag. Make sure you have everything you need for the hospital – see Things for the Hospital for a suggested list of items.
- Check with the hospital regarding any necessary paperwork you need to bring with you, for example, insurance pre-approvals, insurance cards, prescriptions, etc.
- Find out when you will be admitted to the hospital and any specific admitting instructions.
- You may want to create a list of people and phone numbers that a family member or friend should call following your surgery. An alternative may be to designate a person who is outside of the hospital to email everyone or post regular updates on social media.
- Have a couple of gel ice packs in the freezer for after surgery.
- If traveling by air, notify the airline to request a wheelchair be available to you at the airport and upon arrival.
- Some airlines will inquire as to the nature of your trip/surgery. Depending upon the airline, your surgeon may be required to complete paperwork stating that your health is suitable before flying home, e.g., a medical approval form. You will need to send the form or letter to the airline before departure. Find out beforehand about their policies for traveling after brain surgery.
- Hotel arrangements should be considered and arranged in advance for your family during your stay.
- Some hotels offer less expensive “hospital rates.” Make sure you inquire as they otherwise won’t usually state these deals. The hospital should also have a list of these hotels.
- Before surgery may be an excellent time to take time to do something you love and spend some quality time with your family. Also, many people find relaxation techniques, such as meditation and yoga, help them to stay calm during stressful times, such as these.
Day Before and Day of Surgery
The doctor’s office will give you specific instructions concerning the day before and the day of surgery. Make sure you follow all specific instructions provided to you by the hospital staff. Below is a list of some things you may be asked to do before surgery.
- Shower/bathe with antibacterial soap the night before or day of surgery;
- Do not eat or drink after a specific time the night prior (usually midnight). It is critical to have an empty stomach while under anesthesia;
- Do not wear contact lenses, jewelry, or nail polish;
- Make sure you have instructions on which medications you should take before surgery;
- You may be scheduled for an MRI the day prior, and the hospital staff may glue mapping devices to your scalp. If so, you should not wash or get your hair wet.
Going to Surgery
Your surgery time has arrived; hopefully, you have the peace of mind that you have done all you can. Do your best to relax. Know that your neurosurgeon is going to do the best of his/her abilities.
You may be admitted to the hospital either the day of your surgery or the day before. You likely will go to an admitting area before you become a patient of the hospital. At this time, you will be completing and signing standard hospital forms and asked questions about your medical history, including any allergies.
In the pre-op area, you will be changing into a hospital gown, and you will probably have an intravenous line (IV) inserted. The surgeon and anesthesiologist will come in to greet you and briefly explain the surgery. You likely will be given medication to relax you before you go to the operating room.
Once you are in the operating room, you will be placed under general anesthesia. After you are sedated, a catheter will be put into your bladder to drain urine. A portion of your head will probably be shaved at this time. The amount of the hair clipped will depend upon many things; therefore, it is best to leave this up to the doctors. Hopefully, before surgery, your surgeon will have prepared you for where and how big the incision will be. While you are in the operating room, the surgical team will notify your family on the progress of your surgery.
After surgery, you will be taken to a post-anesthesia or recovery area so the nurses can monitor you as you wake-up from the anesthesia. If your vital signs are stable, you will probably move to the Neurosurgery Intensive Care Unit (NICU) for at least twenty-four hours. It is usual for you to be moved to NICU following this type of surgery so you can be observed more closely. At this time, you will be connected to lots of monitoring devices to check your heart rate, temperature, respiration, medication, etc., and you may still have the catheter. Also, be aware that these machines have alarms that may sound for many reasons, including medication doses being low, devices falling off, etc. Some hospitals have inflatable compression devices on your legs that will massage your legs to help you from developing blood clots.
Once the anesthesia wears off, it is reasonable to feel some pain around the surgery site and possibly some neck or jaw pain. Pain medications may be administered via IV or orally. Expect sleeping to be uncomfortable for a few weeks, until the surgical site heals. It is normal to feel numbness around the surgical site; this will slowly diminish. Always advise your doctor or nurse as to any unusual pains or sensation you may be experiencing during your stay. As you will feel tired and weak, it may be advised to keep the number of visitors low for the first day or two.
First Few Days After Surgery
Hopefully, during the first few days after surgery, there will be many improvements. If your recovery is progressing well, you will be moved to a regular hospital floor, and most of the monitoring devices, the catheter, and the IV may be removed. However, you may not have a private room (this is where the earplugs come in handy), and nurses may take longer to respond to your needs due to a higher patient load. If you feel up to it, you may be able to sit up in bed, sit in a chair or walk around the hospital, depending on your recovery progress. Always have someone with you as you’re walking up and down the halls.
Your doctor may order you to start some inpatient physical therapy depending on your rehabilitation needs. Take it SLOW – remember recovering from brain surgery takes time.
Be sure that the nurses clearly explain your recovery process and any restrictions you will face once you leave the hospital.
Leaving the Hospital
Once you discharge from the hospital, you may be able to go home; however, you will need some assistance from family and friends for a while. If you are not ready to go back yet, you may transfer to inpatient rehabilitation, where you will receive both medical care and intensive therapy (see Rehabilitation).
Recovery may be very frustrating because daily tasks that were easy before surgery may be hard. Remember, you will continue to make gradual improvements over time. Stay positive, lean on your support system, and focus on your gains. Slowly add more and more activities to your daily routine. The Alliance to Cure Cavernous Malformation community is here to encourage you as you move through your recovery.
Page Last Updated 2020.5.16