I had brain surgery and was not told to "expect" swelling (and I was in an open label study; i.e. I knew I was getting the real thing.) To say this would probably unblind the placebo group almost immediately. And for the most part I didn't have much swelling; I imagine the amount of swelling would be determined by how much trauma was inflicted to the brain.

There was a puffy kind of look on my eyelids (which several have said is indicative of brain surgery). It was like my eyelids became thin and fleshy and seemed to pile up on my lashes. Of course the doctors and nurses caring for these patients would recognize the post-op appearance of one who has had brain surgery, but they have been trained accordingly. Only the neurosurgeon would know.

I also know that each patient's response to any type of surgery varies greatly. For example, after my surgery (Spheramine) there was an overnight stay in ICU (Intensive Care Unit) built into the protocol. I recall awakening in the recovery room awaiting my transfer to ICU. However, I had this euphoric feeling (an almost "I'm cured!" feeling that lasted for about 2 weeks). I was very talkative and remember telling the male nurse in recovery every clean or semi-clean joke I knew (he was a cutie!). About a half hour later, I saw him on the telephone with his back to me, obviously trying to hide his conversation. He was talking with the neurosurgeon (I found out after he hung up). And this is what he said, "I CAN'T send her to ICU! She's sitting up telling jokes!" So I went straight to the regular room, where I stayed for 3 days.

I recall wondering why my movement disorder specialist didn't visit me (the research nurse did, but it was on my discharge day when swelling was very minimal). In retrospect it must have been because he would have recognized the swelling or "fleshy" eyelids and the study would have been unblinded.

But Jean, this means the bedside caregivers, and in this case POSSIBLY the research nurse, would recognize the after-effect of actual penetration of the brain's dura (in sham surgery, they drill the hole, but don't penetrate the dura). That is putting a lot of trust into those people, some even non-professionals. So there is a big chance someone might leak those receiving the real therapy, even unknowingly. Therefore, this is even more reason to add to taking a long look at the validity of using sham surgery.

Peg