Before I get to some tips for post-surgery head and scalp care, here’s a bit of context for you. As I write this post, it’s been nine months and a week since my craniotomy – a word I admit I had never heard before spring 2021. A craniotomy is a surgical opening made in the skull and is the most common surgical approach to treating brain tumors (source: American Cancer Society). The process involved an incision across my head from ear to ear. I was completely out for the surgery while under anesthesia. The last thing I remember on the morning of the surgery was having a ventilator placed over my mouth and being told ‘oxygen, take a deep breath.’ Seven hours or so later, my neurosurgeon checked in on me as I opened my eyes. A month after surgery, I started radiation and chemotherapy treatment – current standard of care for my type of oligodendroglioma brain tumor.
In this post, I’d like to share a few tips for others who might be facing a craniotomy and/or radiation treatment. I hope this information may be beneficial for caretakes as well. These tips may seem small, but they have been very beneficial to my recovery and sense of well-being. As every individual’s needs are unique, please check with your health care team if these tips may be suitable for your situation.
Post-craniotomy hair and scalp care
For the first few days post-craniotomy, my head was in a bandage and I wasn’t in any condition to try to wash my hair. Once bandages were removed, the part of the head that had been operated on required cleaning with special prescribed ointments twice a day, morning and night. When I was able to shower, I tried not to get water on that part of my head. It was tricky but doable. Here are a few tips that my medical team suggested regarding hair and scalp care:
Non-allergenic shampoo: I used (and still use) a non-allergenic baby shampoo on my scalp. During treatments and while on medication, non-allergenic and non-scented shampoo works best for me. In the US, you can find these at most pharmacies and drug stores.
Exfoliating gloves: The front of my head was very tender to touch for months after the surgery. I had scabs on my head for nearly three months. Once those were finally healed and during a follow-on visit to Duke, one of my nurses suggested trying exfoliating gloves from time to time to gently massage the scalp while washing my hair. I’ve read that this can help remove dead skin cells and stimulate circulation. For me, doing this a few times a week feels very good. My only advice before using such gloves is to check with your nurse to get the go-ahead, including advise on timing and appropriateness. I also used the gloves on the part of my head that experienced temporary hair loss due to radiation treatment (more on radiation below).
Button down shirts: How does this relate to scalp care, you might wonder? For the first month or so after surgery, I only wore button down shirts and avoided putting any sweatshirts or sweaters over my head. When changing clothes, you don’t want to aggravate your incision or surrounding areas or displace any bandages on your head post-surgery. Zip-up hoodies were helpful as well, both for going outside and for avoiding sun exposure.
Radiation therapy forehead and scalp care
I underwent 30 targeted radiation treatments post-surgery in May and June 2021. About two weeks into the procedure, I noticed that I started to experience what I now know is referred to as ‘radiation burn.’ My forehead became incredibly itchy and unfortunately stayed itchy for months. I let my medical team know this, and they provided a few tips to help alleviate the itchiness:
Topical cream: I received a topical cream called calendula that I applied to my forehead every evening during treatment. Post-radiation period, I used it morning and night for several months. If you’re going to start radiation soon or are in the middle of it, check with your nurse or doctor if this cream or something similar might be appropriate for you too.
Put on a hat – a soft hat! I was advised by my medical team during radiation treatment and while in chemotherapy to avoid direct sunlight on my scalp and forehead. They advised that I try to minimize exposure for at least a year. When outside, I always wear a hat. Particularly during treatment, and even to this day, I need to wear very soft hats. In my experience, any hat that is even slightly abrasive to the skin is super uncomfortable to a forehead that has experience radiation treatment. I find that soft bucket hats worked best for the first few months post-treatment. Shielding your head can also help to relieve what would be additional discomfort and itchiness from a sunburn. I even wear a hat when in the car on sunny days.
I hope that these tips help. I'll end this post by noting that I’m extremely grateful to the teams at Duke’s Preston Robert Tisch Brain Tumor Center, Virginia Cancer Specialists, and Virginia Hospital Center for their incredible care from March – October 2021 during the height of my operation and post-op recovery. I thank them and my current team at UC San Francisco.
January 8, 2022
Image: Stanley standing outside several weeks post-operation wearing a bucket hat, mask, button down shirt and hoodie
#Oligodendroglioma #BTSM #BrainTumorAwareness #BrainTumorRecovery #RadiationTherapyRecovery #CancerRecovery #BeWellNow