Friday, November 23, 2012

Pondering the aftermath of brain surgery

Yesterday while in the shower I, all of a sudden started thinking about PTSD (Post-traumatic stress disorder). Why was I thinking about it? There has been some suggestion that a few of us who have had brain surgery have PTSD. 

Any way back to the story … I was standing in the shower thinking about PTSD and remembered something from shortly after moving into the house in Toowoomba (Having moved from Canberra). There was an elderly Latvian couple who lived on one side of us. My brother and I used to run around the back yard (1/4 acre block) yelling squealing and screaming as little kids do. The Lady from next door came over and had a quiet chat with Mum. Mum then came and told us we needed to play more quietly and only to yell out if someone was hurt. It turns out that the lovely gentleman had been in the war. He had been a medic of some description, a doctor I think. Every time one of us screamed, shrieked, yelled or squealed the poor man would have all kinds of problems and get very upset. It only occurred to be while standing in the shower that this was PTSD. It didn’t have a name when we were growing up other than possibly “shell shock”.

Then I got to thinking, if what he was enduring was PTSD: I have a few friends, policemen, ambulance drivers and nurses who suffer from PTSD; then how would this relate to what some of my brain buddies and I experience. I immediately dismissed the idea. What these people had gone through were incredibly traumatic experiences where someone was injured or died.

Then it clicked. Brain surgery IS traumatic, so is the aftermath. I hadn’t ever really thought of it that way because I was so very thankful for it. For some of us it was quite traumatic. Emergency brain surgery leaves a pretty big dent in your psyche even when it goes smoothly. There is no real way to prepare for brain surgery.

I thought I had it all in hand, either it works and I go on to have a life again, or it doesn’t and I end up as a vegetable or dead, if it is the latter I won’t know but the pain will be over. Consequently when this did go we enough that I survived, I stopped thinking about the rest of it. There was the fright of waking up; discovering the small incision in my head and thinking that they had gone in and not been able to removed it. I had been expecting a full craniotomy and ended up with endoscopic removal.  There was further horror of not being able to tell reality from dream or fantasy. Having lost my memory and the abject terror of a) telling anyone how I was really feeling b) the world turning upside down whenever someone told me something that was country to what I was hanging on to as my basis for reality. Of course there was also the fear that someone would find out about it and take me to the doctor, have me medicated and label me as having an acquired brain injury.

When you really think about it, I suppose it would stand up as PTSD. Witnessing and living through your own injury (life altering surgery), facing your own death and getting on with life after. For some of us the surgeries caused their own unexpected problems. A fairly large percentage of us have experienced either total left side paralysation or left side weakness. Another percentage have post op seizures, most of those seem to be focal seizures. Life doesn’t just pick up and start again the day after brain surgery. There is a long road of recovery, physically, mentally and emotionally.

Many years ago I suffered from debilitating panic attacks from a completely unrelated issue. Now I have really big problems phoning to make appointments with doctors and other medicos. I was thrilled a few weeks back that I managed to make a phone call to make an appointment with my doctor without having to spend up to a week psyching myself up for it or having a panic attack over it. In fact, I made three phone calls in three days to the same doctor. So on one hand, I have more confidence that I have ever had in my life and on the other, and paralysed by fear making a phone call.

I went to see my neurosurgeon the day before my 18 month anniversary to give him a print of one of my photos to say thank you for giving me back my life. Then I got to the lift at the bottom of the hospital I felt a bit queasy and nervous. When I got up to his rooms I was mostly ok. He wasn’t in when I dropped the print off with his secretary, I’m actually pretty glad he wasn’t because the second I walked out of that office I went completely to pieces. I was weeping like a baby, shaking like a leaf, incredibly dizzy and felt violently ill. If Alonya hadn’t come with me and then sat me down to have tea and calm down I would have been sitting in the hospital for hours having my little freak out. After I had calmed down enough to go down and get in the car, the tears and shuddering continued for a while. When it was all over, I was SO angry with myself. I thought I was absolutely ridiculous to react like that!

I guess that these random memories are to make me think about it all from another angle and perspective. I now completely understand why this would be classified as PTSD, even though I am still very much reserved about it.