Tips for Pre-Surgery and Post-Surgery

Here are some things that I tried to keep in mind both pre-surgery and post-surgery. I hope some of these help you like they helped me!

Pre-Surgery

Mental Health

• DO NOT rush yourself into surgery. I originally scheduled mine for October 22nd, then felt it was a little fast and pushed my appointment back to November 13th and I could not be more glad I did. I wanted to be good and ready when the time came. After having a few extra bad days and thinking about the life I could have after surgery, the procedure became something to look forward to instead of something to dread.
  
  
• Don’t look too far up the road to what surgery or recovery entails unless it helps you to feel more prepared. Take it one day at a time and take in as much (or as little) information as you’re prepared for.  
  
  
• This is the time to be selfish. Start thinking “What do I want to do? What makes me happy?” 
  
  
• I wasn’t in the mood all the time (and also wasn’t always physically able) but dressing up and going to dinner with my partner, friends, or family made me forget I was a sick girl for a few hours and it was awesome. 
  
  
• Fill your day, even if it’s with trivial things. I used my spare time to call old friends and start reading and writing again, I even started selling random things on eBay and had a lot of fun with that.
  
  
• Start things. I started a couple initiatives at my school while I was on leave and not only was it a good distraction for my mind to plan something, but it also made me feel like I was doing something bigger with my time instead of just waiting and worrying.
  
  

Physical Health

• If possible, seek multiple opinions. I met with three different neurosurgeons and they each told me something different, which helped me make a fully informed decision about what I wanted to do and who I wanted to do it with.
• Neurosurgeon A (Dr. G), to be brutally honest, was very dismissive. He told me I "definitely" did not have a syrinx (whoops) and that my symptoms were most likely due to stress or illness anxiety disorder associated with being a medical student (double whoops). I almost cried on the way out of his office.
• Neurosurgeon B (Dr. J) is a pediatric neurosurgeon who specializes in Chiari and spent extensive time going over my MRIs with me. He told me that I was a good candidate for surgery given my symptoms and how much crowding there was from my cerebellar tonsils but did not directly push me toward surgery. I selected him for my procedure and I truly believe he was the best doctor for me.
• Neurosurgeon C (Dr. S) worked at a private practice and said to me that if I were his daughter, he would tell me to get the procedure, no questions asked. He was so kind and honest with me and let me know that if there were any complications with my case (like if I had a syrinx), he would recommend going to an academic medical center as opposed to a private office.

• Remember to eat! I almost lost 8% of my body weight in 8 months because I wasn’t eating enough due to my symptoms and stress.
  
  
• Move your body every day (but don’t overexert). I realized in this experience that movement is not a given for my body. Even if it’s real light yoga for 5 minutes, try to keep moving. This was great for me physically but it also helped to take my mind off things. 
  
  
• Bodies process stress in a million ways- don’t judge yours for how it reacts. I started struggling with things like sleeping through the night, worsening acne, my skin getting very pale and sensitive, my under-eyes getting very dark, weight loss, and my periods started being super late. I didn't look like the "me" I was used to, so it was important for me to remind myself that even as the exterior changes, it's still me in there.
  
  
• On that note, if you have a fairly regular period, I recommend scheduling your procedure about a week or two after your period is expected to end. My body had so many things going on after surgery, the last thing I wanted to do was worry about managing period symptoms as well.
  
  
• Think about what you'll want in the house in recovery (people, groceries, supplies).  I felt much more prepared having a "Surgery Survival Kit" put together (see post: "Preparing for Surgery: The Weeks Leading Up").
  
  
• Schedule any appointments you were planning on having within the next 3 months of your surgery date before your procedure. I felt so much better going into my procedure knowing I had all my appointments (dentist visit, haircut, annual eye check, etc.) already taken care of.
  
  

 Relationships

• Do not have expectations for how your loved ones will handle the news, everyone has their own stressors in life and no one knows the right thing to say, finding out someone you love is getting brain surgery is probably uncharted territory for almost everyone.
  
  
• But it is also okay to be disappointed in your loved ones for not having the type of response you wanted when you tell them, just try not to harbor resentment or be upset at them, they have not experienced what we’ve experienced (and thank goodness for that).
  
  
• If there’s something specific you want from a loved one, let them know, they usually want to help incredibly badly and just don’t know how.
  
  
• Overcommunicate with your loved ones if you need to talk about how you’re feeling, this is not the time to hold it in (it seldom is), with the right people it will bring you so much closer.
  
  
• For those you are closest with, let them know if you want them to show up for you more. But not in a judgmental way, use a lot of “I” statements i.e. “I will be more needy for a little bit.”
  
  
• Use some of this time to rekindle old friendships and catch up with people you've been meaning to get together with. When I was healthy enough, meeting back up with people I love was a great way to remind myself how lucky I am to have so many people in my corner going into this uncertain time.
  
  
• Tie up loose ends from the past. Anything that feels unresolved, go ahead and resolve it. Talk to that ex, tell your friend what is bothering you, reflect on things. I went into my surgery with so much peace of mind knowing everything I really wanted to say to everyone was said.
  
  
• I’ve found some of the best resources are people who have been through really difficult things in their lives as well and are in a place where they can articulate what that experience was like for them (even if it was very different from brain surgery). For me, because of my age, it ended up mostly being people a good bit older than me who have experienced sickness and loss. But sometimes, you get lucky and find those people who have never been close to the mental space you are in but are there to sit with you in it anyway, and they are also incredibly important.  

Post-Surgery

Mental Health

• Recovery is not linear or even a sinusoidal wave. There’s no pattern. Just take it day by day and don’t overthink it or compare your day to one when you were feeling better in the past. 
  
  
• Don’t place morality on how your body behaves. Your body is going to do such weird stuff in recovery. Suddenly feeling worse after feeling good for a while doesn’t mean you did anything wrong or that the procedure didn't "work".
  
  
• Remember that these symptoms are come and go. Even though it absolutely sucks when a bad bout of symptoms comes on, try to mentally emphasize that the "go" is coming and remember it won't be like this forever (even though it can feel that way).
  
  
• One of the things that helped me most was celebrating the absence of suck. I tried to focus on the good things about my recovery as they came and noticed my body responded far better to keeping a positive attitude. Here were some of the things I told myself: 
• "I am so grateful there were no complications."
• "I could have gotten so much sicker before the operation, during, and after. How lucky am I that none of that happened?"
• "This was the best decision for me, now I can start getting my life back on track."

Physical Health

• Go outside every day if you’re able. Some days this won't be in the cards for you (I couldn’t even make it to the bathroom by myself some days), but if you’re able, try to walk a couple times a day. In my experience, two or three shorter walks daily felt better than one long walk and helped to break up the day. 
• Once I felt ready (POD 20) and on days when it was really cold, I would walk on the treadmill for a little while. I would start very slowly at 0.6 mph, then slowly increase my speed to ~1.5 mph as tolerated as the days passed. When I was ready to stop my walk, I'd move my speed back down to 0.6 mph for a few minutes so I would be less dizzy getting off at the end. 
• If you walk on the treadmill, I'd recommend focusing more on the time and less on the speed. I noticed if I told myself "I want to walk a mile," I'd get impatient and bump up my walking speed, whereas if I said "I want to take a leisurely walk for 45 minutes" I would not push myself that same way.
  
  
• Do stretches EVERY day you’re able to keep the stiffness away (but go slow and don’t overdo it). Ones that I did were:
• I would turn my chin to each shoulder and hold that, ensuring my shoulders did not turn as well, slowly turn back to the center, then turn my chin to the other side (keep your eyes open so you don't get as dizzy).
• The first couple of days I’d hold it for about 5 seconds, then 5 more seconds over the next few days as tolerated. On my best days, I would hold this stretch for 30 seconds, tilting my head up and down slightly. 
• After a week, I started tilting my head up slightly, then down slightly. 
• Shoulder shrugs/rolls helped sometimes too, I'd do these in sets of 10.
• My arms were SUPER sore after leaving the hospital and I could not fully straighten them for a few days, so I stretched them every day too.
• Starting on POD 4, I’d do stretches where I held my arms in front of me, twisted three times at the elbow (palms up then down), touched the same shoulder on each side, and did that in sets of 10. I'd also cross my arms in front of me, then slowly behind in sets of 10.
• Around POD 10, I'd also straighten my arms, reach them forward, then reach them out to the sides in a “T” position and come back to the center in sets of 10.
  
  
• Listen to your body and don't be a hero. If you're in pain, and you have meds you can take as needed and that you haven’t taken yet, there’s no reason to just be in pain. Suffering or barely coping are not the goals. 
  
  
• On that note, I kept a chart of my medications that looked like this and set alarms to keep me on track. This will also make it easier on everyone if/when you call your care team in recovery to explain exactly what you've been taking.
  Disclaimer: My actual med schedule looks a lot less pretty, so I wanted to put a simplified example here:
  
  
  
• Drink a stupid amount of water. It’ll help you strain less with bowel movements, transport nutrients to the places your body needs it most right now, and give you a task to focus on daily.
  
  
• This should go without saying, but follow your discharge instructions! These doctors see patients like us all the time, they know what we should and shouldn’t be getting up to in recovery. 
  
  
• Know the warning signs so you can call the on-call number if something is wrong (a list will be provided to you on discharge which will likely include but not be limited to):
• Fever of 101+F for over 24 hours
• Flu-like symptoms like chills
• Seizures
• Difficulty speaking/swallowing
• Clear fluid draining from eyes/nose/mouth
• Swelling/redness/leaking/bleeding/bubbling at your surgical site
  
  
• I had a rough night with sweating, weakness, chills, and nausea POD 13 which we think was from steroid withdrawal, but this was all gone by the morning so I wasn’t worried. But do not be afraid to call the discharge number if you’re in doubt. I had an incredibly rough day POD 15 with vomiting and horrible headaches and calling in was how I was able to get the meds I needed. 
  
  
• Take it easier than you think you need to, especially for the first few weeks. Remember that one moment of pushing yourself too hard can put you back in the hospital, so play it too safe. 
  
  
• When you wake up at night to take your meds or go to the bathroom, move really slowly to the upright position and keep your eyes open as you do it to limit the nauseous feeling. Some nights I was so drowsy I’d sit up like I did pre-surgery and go to the bathroom and then get a crazy headache and super dizzy and nauseous. 
  
  
• A big sneeze or cough was enough to take me out the first couple of weeks. For coughs, Robitussin and cough drops were lifesavers. For sneezes, I'd plug my nose, open my mouth, and say a little prayer.
  
  
• Remember that with everything your body has been through and potentially some of your medications, your immune system is so busy trying to heal that it's easier for you to get sick. Get plenty of rest and if a loved one wants to come by but has cold or flu-like symptoms, play it safe and reschedule or do a video call. 
  
  
• This one is one of my least favorites, try to keep laughing to a minimum the first few weeks. I love to laugh but the pain that came with it most of the time unfortunately wasn't worth it.
  
  
• When the pain gets super super bad, try not to freak out. This may go against everything in you evolutionarily (it did for me) because when I got my episodic pounding headaches I clenched my jaw, temples, and shoulders- which made it all feel worse. So instead, I learned to stay really still, open my mouth to relax my jaw, breathe super deep, and think/say out loud “I’ve got this”- it might sound really dumb but it was the best thing I found to get me through it. I noticed every time I freaked out, I started feeling like the world was going to end and all my symptoms heightened. You are so strong and your mind is so strong. Trust yourself, you’ve gotten this far. 
  
  
• Also when I got pounding headaches, my gut instinct was to hold my head in my hands, I do not recommend that. Lowering my head made it worse. Sitting upright or standing as much as possible felt the best. I don’t know if it was because of gravity, blood flow, CSF flow, or preventing inflammation (probably all of it), but it was a huge help.

Relationships 

• If possible, have someone with you when you take your meds. A lot of the times when I took them by myself I second-guessed if I took everything correctly, especially when it came to my steroid taper. 
  
  
• If you can, have someone home with you as much as possible to be there in case something happens, you need help, or you just don't want to be by yourself. I could not have done my recovery alone. Having people I love there when I had difficult nights or needed help going to the restroom, getting food, and moving around the house meant everything to me.