Less than four hours after saying “goodbye for now” to my husband and being wheeled into the operating room for removal of a skull base meningioma, a type of brain tumor, I woke up in the recovery area. I could see and hear and speak and think… what a relief! I sported a bulky bandage on top of my head, and the head of the hospital bed was elevated.
It would be another five hours before I was moved to a room, but I didn’t mind. My husband was allowed to stay with me. I was offered water, then a cup of coffee (yay!) and some crackers. I couldn’t taste the coffee or crackers, which I was told was a temporary side effect of the surgery and irritation of the olfactory nerve.
The surgeon removed the bandage the next morning, and I learned more about the surgery itself. An incision was made across the top of my head behind the hairline, and my scalp and hair were folded out of the way. A section of my skull was removed and placed aside. The tumor was accessed between the lobes of my brain using a microscope and a long probe. The skull base was scraped. After the tumor was removed, the skull section was put back in place and secured with tiny titanium plates and screws. My scalp was put back together with dissolvable sutures and a type of glue. I found it very fascinating and amazing.
My hospital stay was quite uneventful, and my pain was mostly controlled with Tylenol. I watched a lot of HGTV, did almost an entire book of crossword puzzles, ate attractive food with no smell or taste, took walks in the hall, and napped off and on. Less than 48 hours after surgery I was discharged home.
My discharge instructions included keeping my head elevated with no bending, no lifting or straining, and no driving. I also needed to keep the incision dry for a couple of weeks and to continue with the anti-seizure meds until directed by my doctor.
I wish I had been prepared for all the noises I heard in my head over the next couple of weeks. There were crackling sounds, swooshing like the sound of water splashing, and squeaking in my nose. It was weird, but the doctor said the noises were normal with air escaping and tissue moving back into place where the tumor had been.
My hair was sticky, coated with antibacterial goop that I couldn’t wash off until I was allowed to shampoo a couple of weeks after surgery.
During my recovery, church friends brought a lot of food. I was very grateful, although I honestly felt bad that they were going through that effort when I couldn’t taste or smell anything. I appreciated all the cards and messages and prayers from friends and family, and I felt very loved.
About three weeks after surgery I developed an itchy rash on my waist. At first I suspected shingles, but the rash spread to my side, back, thighs, and behind my knees. The itch was unbearable and covered about 1/3 of my body. That was by far much worse than any pre- or post-surgery discomfort. My doctor suspected that I had a delayed reaction to the anti-seizure medication and told me to stop the med and take antihistamines. After a visit to a dermatologist and a complete month of steroid creams, Benadryl, Zyrtec, ice packs every couple of hours around the clock, and frequent cool showers, the hives finally eased up.
By now I was almost two months post-op and a feeling of discouragement settled in. I felt like I had no creative energy. I was easily fatigued and almost apathetic about everything. I had expected that as soon as the tumor was removed I would feel as good as new, and that hadn’t happened yet. Plus I was really missing the smell and taste senses.
I tried all kinds of “smell therapy” like intentionally sniffing a variety of items several times a day and trying to remember what they should smell like.
I realized that I was reacting to the loss of taste by overeating– trying in vain to find some satisfaction from food.
And then one day I discovered that by adding a lot of lemon juice to water I could sense that it was sour. And if I added hot sauce to food I could sense that it was spicy. I couldn’t distinguish tastes, but I believed that it was a good sign that my senses would return.
The next change in my altered senses was “olfactory hallucinations” or “phantom smells.” Even when no real smell was present I experienced “smells” that could last all day. They were usually unpleasant– like burned toast or other smells that I couldn’t identify. The constant phantom smells altered the way I experienced food. Now instead of no taste, everything tasted like soap– or worse. But again, since this was a new phenomenon for me, I had to interpret it as a good sign.
As Thanksgiving and Christmas approached, I had high hopes that I might be able to smell the aromas of holiday foods, scented candles, pine trees, and experience all the traditional smells and tastes of the season that I remember. After all, my surgeon had said that the olfactory nerve was intact and I should regain those senses within six months. The holidays came and went with no smell or taste, and although I tried to create other memories and experiences, I still felt sorry for myself. One day I cried in the grocery store.
As I write this it is nine months since the amnesia and over seven months since surgery to remove the meningioma from under my brain. The dent in my skull is just deep enough to hold a headband in place. I am extraordinarily thankful for the people who loved me through this past year. I am starting to accept that I may never smell or taste again, and that’s okay. There are so many other things for which I am deeply grateful.
3 Comments Add yours
Glad to hear you have such a positive attitude.
Worry about nothing but pray about everything!
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Thank you and amen!
We are grateful for you!
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