I have gone over and over it in my head and simply cannot find a clever way of saying this or even a way to soften the blow (so to speak) but it turns out I need to have a second brain surgery.
Bugger (plus a string of expletives, if you are anything like me).
Bear with me whilst I explain how this has come to be.
In Jan 2015, I had my post-operative cerebral angiogram and my surgeon told me (over the phone) that a tiny (1mm) weak spot had pushed out near the clipped aneurysm and that whilst it wasn’t a concern, it would need to be monitored. When I met with her next, I asked her to show me where the new weak spot was and like all surgeons she drew a simplistic representation of the artery, the clipped aneurysm and this new small bulge. On the drawing, the new bulge was on the opposite side of the artery to the clipped aneurysm and she explained that treating the aneurysm altered the blood flow in that area and this can sometimes lead to other weak spots showing up. Unexpected but okay; in effect this left me with two small aneurysm that still required annual review.
Having moved to Denver in the United States in August, I had to establish a new cadre of health professionals to manage my ongoing care and just before Christmas last, I saw a Neurosurgeon for my first review. Before I could meet with him, I needed another brain scan. Once at the appointment he informed me that my Australian surgeon missed part of the original aneurysm with the clip. Frickin’ awesome says I. The imaging shows it may be as much as half the original aneurysm.
Now you might be thinking how did my Australian surgeon miss seeing that on my post-operative scan. The answer is that she didn’t. We have since gained access to the report of this scan where it states that as much as half of the aneurysm remained unclipped. She lied to me. It’s that simple. She lied knowing I was coming to the states, where they would see it and deal with it.
Every time I think I have worked through my anger about this, it seems to rise up again, out of the pit of my stomach, bitter and all consuming.
So there Jason and I are, sitting in the doctors office after all of four months in Denver, expecting to be told nothing more than “Everything’s fine, see you in 12 months” but no, the doctor starts talking about surgery to fix the original aneurysm and “whilst he’s in there” clip the other small one. As he detailed the need to go in from the other side to the previous surgery, my mind was racing. I recall looking at Jason with nothing less than shock on my face only to see similar signs upon his.
For those of you whom have never met my husband, this is a man whom upon watching a snake rise up out of the umbrella hole of our table one night on our honeymoon, slowly raised a single eyebrow in response! For me to see shock on his face meant there was a serious disturbance in the force that day.
Thankfully all my experience with receiving unpleasant health news kicked in and I found myself able to begin asking questions. I managed to explain to the doctor that I was nearly two years out from the first brain surgery and was still dealing with the consequence of that – double vision, head pain from the metal and seemingly unrelenting migraines. Thankfully, he heard my concern and disbelief and stopped talking. He gently felt my old surgical site and with a deftness of hand that I still find reassuring assessed the procedure I had undergone, explained why poorly placed metal screws and brackets were likely causing me problems and then explained how he doesn’t use that procedure any more, having developed his own, less physically traumatic approach. His procedure requires a smaller skull hole, substantially less cutting of the jaw muscle (which means less of my face peeled away from my skull and reattached) and fewer metal brackets externally. He also volunteered to remove as much of the metal in my head from the last operation as he can. At a follow up consult, both the surgeon and his resident felt my head looking for these brackets and were surprised that all of them were so exposed, as apparently, here, they bury the metal as deeply as they can under muscle so it can’t be felt from the surface. All of the metal in my skull can be felt easily and it continues to be tender to the touch two years out. Grrrr.
Whilst all his talk of a better surgical technique was nice, Jason and I still left the appointment largely in shock. Neither of us was expecting to hear that I needed more surgery, let alone due to my previous surgeon’s incompetence!
If I’m honest after a couple of days pondered his suggestion, I found myself shelving it, in what I now recognise as denial. I simply could not face even the thought of going through the surgery again. I have had such a difficult recovery, experienced so much pain, and had been ignored by my Australian surgeon who refused point blank to see any connection between the surgery and my ongoing issues. As much as I try to stay upbeat, managing things as they come, I have suffered greatly these past two years and honestly, could not find it within myself to do it again. My resilience reserves are frankly depleted.
After some blissful self-imposed ignorance, I decided I needed a second opinion, and met with another Neurosurgeon, one specialising in vascular aneurysm treatment (non-surgical) but can do clipping as well. After a detailed discussion of the options, including not doing anything right now, he agreed with the first doctor that surgery was the best treatment option and it was warranted sooner rather than later. Due to me still being young (ish), they know over time the aneurysm will continue to grow and waiting just invites the opportunity for a brain bleed to occur. We were very somber walking out of this appointment.
It was at this point that I collapsed in upon myself emotionally. Jason seeing my misery, wisely reached out to the counselors provided via his employer and I grudgingly met with one of their Psychologist. I won’t detail everything we went through but suffice to say, she validated my experience and my grief and basically gave me permission to stay in my sadness and anger for a while in order to process it. The thing about being the type of person, who pushes through difficulty and ‘bounces back’ from calamity, is you begin to expect an awful lot of yourself. I took the time I needed to begin to come to terms with my fate. It wasn’t easy and I am so grateful to Jason for being so gently with and kind to me during this time. He gave me a safe place to be in the midst of my suffering.
After a while, I realised that in order to commit to surgery I needed more information. I had to reassure myself that I would not have such a horrendous time. My mind was full of all the poorly managed aspects of my post operative care last time; such as insufficient pain relief, being left vomiting for three days due to the pain, severe swelling and double vision, to name a few things.
We met with the first surgeon and a Resident, to go over everything and run a few (dozen) questions past him and eventually, grudgingly, agreed to schedule the surgery. I go into hospital next month on Thursday July 21st. Jason said my questioning of the surgeon was as though I was interviewing him for a job, and I guess I was.
On a couple of occasions, I had to provide context for my question as they looked at me as though I had sprouted a second head. An example may be useful: With brain surgery it’s critical that they keep the patient’s blood pressure spot on, meaning there is enough blood circulating to keep the brain alive but its the minimum amount of blood flow they can achieve so that should there be a bleed during surgery, there is less blood flowing. To monitor the BP this closely, they use arterial BP measuring which requires two very large needles to be inserted into the underside of the forearm into arteries. It is a nasty procedure that results in some of the worst bruising I’ve ever had. Just prior to going to theatre the anesthetist told me, he would put those needles in once I was unconscious. That is standard practice. Unfortunately, he was also a lying sack of s@i% and as soon as I was in position on the operating table, he grabbed my arm, slapped it vigorously and put the arterial needles in whilst I was wide-awake, no pre-op sedation, nothing, wide-awake. It was excruciating and the pain was the last thing I experienced as they anesthetised me. This may be why the brutality of that moment has stayed with me.
Back to the US, and I share this anecdote with my new doctor and as he and his resident exchanged glances, my surgeon reassured me that I would not be awake for that. When we finally left him in peace, Jason commented that he thought they must think that medical care in Australia is barbaric. Sadly, sometimes it is.
I’m happy to say that now for the most part I have moved through my sadness and fear. We both still have moments where it all feels a bit too much but we have each other and now that we are reaching out and telling people, lots of moral support. Being on the other side of the world away from everyone we know is adding its own stress. That said our new friends here and work colleagues of Jason’s have already begun making sincere offers of assistance and his work’s admin team have been super helpful and are doing everything they can to support us. One friend has set up a Meal Train web pigeon our behalf so people can volunteer to bring us a meal on a given day, which is reassuring in that I know I will get to see a vegetable occasionally in the first few weeks at home. Also, my mum will be coming over shortly after the operation, once I’m home and need someone to help out.
Despite my reluctance to go through another craniotomy, I am very impressed with the surgeon here. He is highly experienced and as mentioned earlier, has developed a less physically traumatic approach to the surgery. He was very approachable and understanding of my concerns and from what we hear, is one of the best Neurosurgeons in the State, the guy other surgeons’ send their tricky cases to for care. This very experienced doctor sat in front of me, for half an hour patiently answering every question I threw at him. We are very optimistic of having a better outcome and easier recovery than last time.