I run an awesome support group for young adults with Acoustic Neuromas and this was our joint compilation of tips and tricks to prepare for brain surgery.

Prior to surgery

-Do your research. Make sure the doctors you are seeing regularly remove Acoustic Neuromas specifically. This is a rare brain tumor and someone who has seen one of these in their career tends to not give as good of results.

-Spend time on anausa.org using their resources to know your options and possible outcomes.

-Stay fit, be active, walk, and practice balance exercises. Good nutrition, adequate sleep/rest, and stress reduction techniques are great ways to prepare. How you enter surgery will impact how you recover from it. Some folks found that reducing caffeine intake prior to surgery helped with caffeine withdrawal headaches in the hospital.

What to bring to the hospital

-Bring a button/zip style shirt to wear home.

-Bring your own pillow so you are comfortable.

– Chap stick

– Face wipes

-Phone charger with a longer cord.

– Fuzzy socks with grips for when you’re in bed.

-Pajama pants (to wear under gown when walking with PT).

-Neck pillow for the ride home.

-Glasses repair kit in case you need to remove an arm, and a glasses chain.

– Notepad and pen, especially if you can’t have a support person to ask questions of doctors, or record what they say (voice memo).

– Bring a book or download music / podcasts that you find soothing or distracting. Be prepared that you may or may not be able to enjoy it, as reading and/or music may be too much stimulation for eyes and ears post-surgery.

-Create a private Facebook group or a Caring Bridge page where you (or preferably a designated family member / friend) can post updates for close family and friends. It can be overwhelming if you are receiving a lot of texts post-surgery.

Tips for returning home and prepping your space

– Prep your space in advance to be ready when you come home.

-For your shower the following are helpful: shower chair, suction cup grab bars, baby shampoo, nonslip shower mats, loofah/bath brush with a handle.

-Wedge pillows

– Gait belt may be helpful for balance and the hospital may send you home with one.

-Your surgeon will have some temporary restrictions during recovery to reduce the risk of CSF leak (for example, no bending or lifting). Move commonly used items to a height where you don’t have to bend and consider purchasing a grabber tool to help.

– Lighting is important – install nightlights for safety, as balance is worse in the dark.

-Quiet will be important for healing. Sound will be extra fatiguing.

-Expect some balance issues and use care when walking. (Some may need a cane or walker temporarily).

-Most people experience nausea immediately after surgery due to general anesthesia and having your balance nerve removed. Your anesthesia team will work hard to accommodate. If you experience nausea during your recovery, your physician will discuss helpful medications with you.

-It may be difficult to sleep, based on medicines, adjusted sleep schedule, finding a comfortable position, etc.

– Be prepared to sleep with your head elevated for a period of time (surgeon will provide time line) to avoid CSF (Cerebrospinal fluid) leak.

-Hydration helps. Have plenty of fluids (water, sports drinks, soups, popsicles) on hand –unless contraindicated, staying well hydrated will help not only with headaches but also energy levels.

-Compile a list of specialists that you may need after surgery, such as a vestibular therapist, cognitive therapist, etc.

-Compile an Amazon wish list of items that you might need – eye patch, beanie hat with ice pack, heating pad, eye drops, extra coffee for headaches, etc. so you can purchase quickly if needed.

-Oftentimes friends and family are looking ways to help. Be as specific as you can so they know what is actually helpful. Share your Amazon wish list of products with them. Ask for digital gift cards to purchase media. A meal train can be super helpful the first few weeks. If you have children or animals a schedule to assist with those can be very helpful.

-Keep an optimistic outlook – it will help with recovery. Know you have made the choice that was right for you, you have done all that is in your control, and you will adapt to whatever happens after.

– If you need to talk to someone, contact the Acoustic Neuroma Association to help you find a peer match.

-There may be a grieving process of losing hearing and the life you had before. Give yourself time for recovery – both physical as well as mental.