How to Tell That Swelling Is Severe
Even without midline shift, swelling can be assumed by the time the patient is needing end-stage care. How can you tell that swelling may be severe or may be under-addressed by the current dose of steroid?
The patient is sleeping excessively.
When the patient is sleeping 20+ hours per day, is falling back to sleep soon after meals, dozes off even in the midst of full stimulation (eg, a room full of visitors), and seems too fatigued to enjoy things that had been previously enjoyable to him or her, this is a red flag for edema.
The patient seems off the mark or fuzzy in several areas of function.
One of the best indicators of swelling is when there are new symptoms or an increase in symptoms across the board, in several categories. For example, when the patient is newly incontinent, seems more confused than he or she did just days ago, is now slurring speech or leaving sentences unfinished, is fatigued, and has had a couple of falls while getting around the house, these are significant events not only individually but because they are happening under so many columns of function.
The patient is complaining of headaches, especially upon awakening.
Headache is an easy indicator of swelling, particularly after the patient wakes up. In the patient who is no longer verbal, signs of headache may include grimacing, moaning, or putting the hand to the forehead. This is important: Many patients cannot register their pain on a scale when asked "How bad is it?" or cannot rate the pain in comparison with a previous time ("Does it hurt more than it did yesterday?")---these concepts are just too abstract for many of them to process. The caregiver may have to rely on nonverbal cues to discomfort, including those mentioned above. These signs may even be present while the patient is asleep.
The patient is nauseous or vomiting.
When swelling is severe, the three red flags are excessive sleep, headache, and nausea. In such a case, simply raising the steroid dose may be an act that is "too little, too late." If the patient has been nauseous for half the day in conjunction with strong headaches that haven't responded to other medications, and seems unwilling or unable to move much due to the discomfort, contact hospice or (if not on hospice yet) the doctor who prescribes the steroid, and describe the patient's status. Oral antinausea drugs are unlikely to have any impact at this point, and this only makes sense. The cause of the nausea is not in the stomach; it's most likely brain edema, and it won't resolve unless the problem is addressed at its source. Several patients have been advised to take new drugs targeted toward nausea, but the problem continues since the swelling of brain tissue and the intracranial pressure remain. The patient may need to be admitted to the hospital for IV mannitol, which isn't used often or lightly but can dramatically reduce swelling in a short amount of time and restore some temporary quality of life. But...it's best not to allow it to get to that point, by remaining alert to other warning signs that swelling may be getting away from you.