My daughter’s decompression surgery was 7 days ago, on January 20, 2016. She was released yesterday afternoon and things are going well so far at home. Her neurosurgeon removed (and did not replace) a small portion of the back of her skull, her C-1 vertebrae, and enraged the lining if the brain with duraplast. I am sharing my experience in hopes of educating anyone having this surgery or caregivers of someone having surgery. This is a down and dirty rundown of how it went.
First, when she woke from surgery she was in a very significant amount of pain. This is hard to watch, but it is NORMAL. The hospital staff quickly and efficiently different pain meds in different amounts until she was somewhat comfortable. He pain went out of control several more times over the next three days she was in ICU, even though she had a self administered pain pump. Each time, the pain was quickly controlled with IV pain meds. This too is NORMAL. Ice packs were not helpful as they were too heavy; however, a cold wet washcloth on her forehead seemed to help.
Her misery was compounded by the fact that she couldn’t lie in the incision site or she would scream in pain, and it was also painful to move her neck and upper body. We found a combination of body pillows, hospital pillows, and small flat pillows, continuously arranged in different formats, helped. So bring every type of pillow you own to the hospital.
She had a catheter for the first two days and therefore did not have to get out of bed. The third day, the catheter was removed and my daughter needed to walk to the restroom. With the help of a physical therapist, my daughter rose to a standing position. This was very painful for her, and took about 10 minutes. Her head and back needed support, and she had to be lifted to standing. Walking her to the restroom required two people. All in all, it took about 30 minutes to walk the 3 yards round trip back to her bed, upon which time she fell asleep. She cried and moaned in pain the entire time.
Later on day 3 the physical therapist came back and helped her into a chair, excruciatingly slowly and painfully. We propped her head on the sides, and this position seemed somewhat comfortable for her for about an hour.
Day 4 she was transferred to a regular room. She still had no concept of time, or whether it was day or night. She also could not remember who had come to visit, or on what day certain things had occurred. Still on large doses of IV pain meds and muscle relaxers.
Day 5 she seemed a little more comfortable, and by the end of the day was taking all medications by mouth. Although she cried for the nurses to give her IV pain meds, as they work much faster. She still needed considerable help from one person to rise up out of bed to walk. The physical therapist wanted her walking a short (and I mean short) distance three times a day. Time these “walks” when meds have been given, but before the loopiness kicks in. She is 13 but walked like a teetering one-year old.
You will not feel like you are ready to leave the hospital. But in the 24 hours since we’ve been home, there has been significant improvement. She can support her own head for a longer period of time, and can use the walker with some assistance. She is becoming more steady on her feet, and the “bad episodes” of pain are fewer and farther in between. I got her up three times last night to use the restroom (she can’t seem to get enough to drink) and I gave her meds each time. She has napped on and off today, and enjoyed sitting in a heavily pillowed chair outside for about 30 minutes.
I want everyone to know that recovery is different for everyone, and my daughter’s seems to be on the bad end of the scale. Just know if yours is too, it is NORMAL! I was scared every step of the way because no one had shared an experience like ours. I had expected much less pain and a quicker recovery. And no one told me my daughter would not be able to walk unassisted for around two weeks! She still needs 24 hour monitoring and help, so be prepared. Also, cognitively my daughter is about that of a 7 year old. I’m told this is also NORMAL and she will slowly regain control of her words and emotions.
Bottom line - this is not easy. It’s not pretty. It’s the most painful and scary thing you will hopefully ever have to endure. But, the fact that my daughter reports no more ringing in her ears, no numbness anywhere, could read her hospital menu without help or following the words with her finger, and the “full” sensation in the back of her head is gone - well, this surgery just may be worth it.
