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It’s been almost exactly a year since getting a cavernous angioma removed in awake craniotomy. Over 12 months almost all the scabs are gone, but the scar is still there and always admired by barbers. I think it might be worth sharing the experience with others planning for it.
By the time six months went by and seizures were still happening - even though they weren’t all major ones - I made up my mind to get the angioma removed.
Instead of living with the fear that seizures could keep happening and potentially cause brain damage - and with the benefit of its location making surgery possible - it seemed like a no-brainer.
When I first started discussing it with the surgeon I was given a couple options. Because the angioma lived on an accessible part of my brain that controlled language processing (the left temporal lobe), I would need to be conscious while parts of the procedure happened so I could show that I still functioned and he wouldn’t be removing the important bits. He’d be mapping out my brain in real time.
The second option allows for the patient to be asleep during the whole procedure, but the surgery would need to take place in two segments a few days apart. It would be the better option for someone who doesn’t want to be awake at all with their skull opened, but the risk of infection would be higher. For that reason, being awake during the surgery seemed like the way to go.
The surgeon and his assistant gave all the details about things like washing my hair and fasting the night before the surgery. I remember the anti-bacterial shampoo I used for two nights before the surgery (Hibiclens) feeling like pouring rubbing alcohol on my entire body.
The process really starts when you’re laying down with the stylish gown and getting the IVs stuck in your hand and arms. After I said bye to my wife and parents in the pre-op area, I was wheeled into the operating room.
The surgeon asked me if I’d prefer to have him shave my whole head or just the necessary part. I was still conscious enough to think about how it would be an endless struggle to have one part of my hair growing back at a different length than the rest of it and how it might never be an even length again, unless it was all shaved off anyway. So I decided to have it all shaved; I think the surgeon agreed.
Before the haircut I was laid down on the surgical bed and talked to by the anesthetist. I was turned onto my right side and started having a conversation with the assistant who was there with me the whole time. I was then anesthetized for a period of time while the catheter was inserted and hair cut, skull opened. The surgeon said that patients do sometimes recall a saw-like sound after the surgery, but I didn’t.
At some point I was brought back to consciousness. The first thing I remember is feeling a lot of weight on my head, like a really heavy blanket pushing it down into a pillow. Not painful though, just a little uncomfortable. I hear weighted blankets are a popular millennial thing, but maybe not so much in this situation.
The friendly surgical assistant was sitting in the same spot in front me with some drawings. He started asking me to identify what they were, since the angioma was affecting that part of my brain. There were many, but the only one I can really remember is the house. I was able to identify them until at some point I just couldn’t. At those points, all I could do was sort of groan and space out. Then I’d come back to reality and he’d ask me again. I don’t know how many times that went or how long it lasted. As far as my basic understanding of brain surgery goes, I think that was when the surgeon was mapping the areas of my brain that he could safely remove or not, based on where he was sending electrical signals.
After that, I was put back under and never woke up again. Just kidding. I woke up about 8 hours later.
The next thing I remember is being in the Intensive Care Unit (ICU) and hating the fact that I had a catheter. There was also a helmet of bandages on my head with a drain on the top coming from a hole that drained blood and tissue fluids. That was unexpected and a little gross to think about, but only stayed on for a couple days. I was also told that I was demanding to have the tube in the artery of my wrist removed before I was even fully awake; I don’t remember doing that, but it sounds like something I’d do so I’ll take my wife’s word for it.
Steroids were given through an IV periodically to reduce any swelling or pressure around the brain. That was the hardest and worst part of the first night after surgery. Sleeping was almost impossible, since the nurses needed to wake me up throughout the night to give me those steroids.
Speech and concentration were a little slow early on, but that’s to be expected. I was able to walk around carefully with the help of a ICU nurse.
It was fairly difficult to handle the constant attention and injections, but I did get the benefit of a guaranteed private room.
After only two days and one night in the ICU - and sponge cake for every meal - I was moved to a regular room for another day and night. Neck pain was the biggest problem, and seemingly a common one for others.
My greatest memory from the days after surgery was the surgeon paying me a surprise visit in the regular recovery room and giving me the OK to head home. It meant a lot and I’ll always remember that part the most.
Once the head dressing and drain was removed shortly before leaving and a nurse helped wash my head, all that was left was a little stitched-up hole and a scar that looked like a big fish hook held together by about 40 staples.
I depended on my wife for weeks after getting home to help wash my head with baby shampoo and dry it entirely. It’s really important to make sure it’s completely dry. I also wore a nurse bouffant cap every day and night for a couple weeks after getting home, just to be really sure that nothing got anywhere near that scar or the drain hole. I was extremely cautious to keep it from getting infected, to the point of paranoia.
Strange things happened after your surgery. The side of my head with the scar felt numb for a while; it was about six months before I could feel it. I felt and heard little crackles and pops inside my head while the bone sealed itself back together. That side also swelled and bruised a few days after the surgery. It ended up looking like someone punched me really hard in the temple.
It took about three weeks for me to feel well enough to go back to work. I still wore a winter hat every day for weeks so the scar and drain hole were protected. Identifying the names of objects and people still took a little longer than normal, but it slowly improved and recovered.
It definitely took time for me to correctly name even basic objects like blankets and pillows.
A Year Later
Now here it is, about a year and one month after the surgery. I still have scabs in certain areas, mostly behind my left ear. When I raise my eyebrows I can still feel a little stretch of the new skin. I wonder if that’ll ever go away. But I can think, understand, read and learn better than I could since the whole ordeal started more than two years ago.
In case you’re reading this and preparing for a surgery yourself, here are a few tips I can offer.
Angioma Alliance has a great article outlining every step in the surgery process, from preparing your finances and family right up to what to do in the operating room. It’s definitely worth it to read through this if you’re preparing for a surgery.
I didn’t go out in public for weeks before the surgery, thinking it would avoid any risk of getting sick and delaying the surgery. That might have been over the top, but do whatever you can to stay healthy in the days leading up to it.
It’s a good idea to stay in a hotel close to the hospital the day before the surgery, if possible. You’ll want to avoid the stress of not being able to get to the hospital in time.
Overall - as obvious as this is to say - just don’t stress out about it. Feeling a little anxious is fine, but have confidence in your surgeon and think about how cool it’ll be when you get to take a ton of photos of your big scar. Play a video game or solve some puzzles or do anything else that requires a lot of distraction and concentration the night before, and of course, sleep.
Just be very careful that the drain hole and scar don’t touch anything, and don’t touch it with your fingers. Don’t scratch it or touch it even when it’s itchy; wear a baseball cap so you don’t expose it to sun for long; just keep it safe, clean and dry.
I wouldn’t recommend getting a haircut before at least a few months after you get home, especially if you’re a person who likes to get it shaved close to your head. One comb swipe over the wrong area can rip a scab right off, which happened to me, but luckily it happened after the scar was already healed. I was lucky enough to have a barber who wore sanitary rubber gloves while touching my head. While probably not necessary, it gave me a little extra comfort.
Speaking of scabs - don’t pick them off. Let them fall off naturally. You’ll find them in your hair while taking a shower, in your hat when you take it off and on your pillow when you wake up (and probably lots of other places, if you pay attention). I still had a few almost a full year after the surgery, but it’s important to make sure the skin underneath them is fully healed and not open at all.