A personal perspective on brain training apps.

I saw a neurosurgeon for a second opinion today. I took a neuropsychological friend along with me, which was great, because she was able to take notes and discuss what happened with me afterwards. My scans on February 17th were almost identical to those taken on January 2nd, prior to my surgery on January 6th. It's possible the tumour was removed and has regrown. His advice was to remove it with a right temporal lobectomy. I'm feeling relieved and comfortable with that, as I intend to live for many more years so that I can keep learning about neuropsychology and sharing my knowledge, thoughts, and experiences with others. As well as being around for my children as they continue to grow up.

My friend and I  also had a very animated discussion in the waiting room about the benefits of brain training  programs. I could sense the other patients and companions taking an interest in our discussion. I showed her some games on Luminosity, and told her I thought they had poor ecological validity, were frustrating when I can't improve with repeated practice, although they may provide people like me with a baseline and ability to track deterioration over time. I told her how joyful I felt when I was able to complete a crossword puzzle recently, and how i'd prefer to spend my time with friends, either in person, or talking on the telephone, or doing crosswords, or writing, rather than playing games derived from neuropsychological research. These games are intended to measure cognitive function, they're not intended to be fun, and many of them aren't. Some of the Luminosity games are fun initially (like penguin pursuit, pet detective, the barista game, and other tests of flexibility and problem solving), but I find them discouraging when I can't improve, even with repeated practice. My friend reassured me that cognitive training works for working memory function, which I believe (think of all the evidence that learning musical instruments improves attention, memory, and other aspects of cognition in children and adults). She reminded me that brain training probably isn't right for me at the moment, given my recent brain surgery

 Using Luminosity for a few weeks means that I now understand exactly what patients mean when they say our tests are meaningless to them. I usually used to reply that the tests were normed on healthy people of different ages and backgrounds, so that they allow us to tell if a person is performing as would be expected for their age, education, gender, and ethnic background. It doesn't matter how interesting the tests are to the clients, though I empathise with patients who dislike the tests, because it must be hard to give one's best effort when a test is irritating and seems pointless and unrelated to the concern that has brought you to see the psychologist. 

Must sleep now, I have a busy day tomorrow, and surgery is scheduled for February 28th. I might have time to look at Norman Doige's new book on how the brain heals itself before then. However, I'd rather keep myself fit and healthy, and write as much as I can before I have surgery again.

I now have recurrent GBM

I'm writing briefly for those of you who may  still be waiting for the notes from my presentation at the 2014 CCN conference on patient-centred care. I still have the powerpoint slides on file, but it doesn't seem possible to upload ppt files to blogger, so my plan was to cut and paste text and images from the files into a blog post, and to elaborate on each slide so that a written version of my presentation would be available.
I'm still hoping to do that some time, but that will depend on the results of my most recent brain scan, and my visit to a new neurosurgeon for a second opinion tomorrow.

I was found to have a new tumour (in the right temporal lobe) on January 2nd, and it was removed four days later. We were told the post surgical MRI showed no residual tumour or perioperative infarct (bleeding). The histopathology was "the same as before", presumably that meant GBM. The neurosurgeon said that the Gliolan hadn't helped identify any tumour that he wouldn't have seen with the naked eye or stereotactic imagery.

I saw the neurosurgeon for a review on February 3rd, and he indicated that he debunked most, but not all of the tumour because it was growing in the lateral ventricle, and he didn't resect absolutely all of it because he didn't want to cause me any impaiment, or to adversely affect my quality of life. I wish we'd spoken about the neuropsychology of the right temporal lobe, because I supervised several (as yet unpublished) postgraduate research projects that looked at neuropsychological outcomes after epilepsy surgery for patients with hippocampal sclerosis. The data consistently showed very little neuropsychological impairment for right temporal lobectomies, with a minimum period of 6 months between surgery and reassessment. People undergoing left temporal lobectomies tended to have more problems, with decreases in verbal memory function and confrontational naming abilities. So, on the basis of at least 3 students' analyses of pre and postoperative neuropsychological data, I would have told the surgeon to not worry about my right temporal lobe, and that I could cope with possibly developing impairment in visual memory after surgery. This would affect my quality of life far less than living with the knowledge that there still may be residual tumour left in my brain after the most recent craniotomy, and that it can't be treated with temozolamide (a form of chemotherapy) because I had a severe and prolonged pancytopenia after receiving that drug for 4 weeks in 2013. Also, it is possible that the region of the most recent tumour may not be able to be irradiated because I've already received radiation in close proximity to it, and because the tumour was close to the medulla, which apparently can only receive a certain level of radiation.

The question of radiotherapy is a technical one, which hasn't yet been answered. The current treatment plan is for me to have Avastin, an anti-angiogenic agent that stops tumours growing their own blood supplies. It also impairs healing of wounds, so I'll have to postpone the prophylactic mastectomy that I'd hoped to have early this year (My remaining breast was normal on two MRIs last year, but I wanted it removed, just to be safe. Now it's the least of my worries in the scheme of things)

I have no idea what tomorrow will bring. I haven't heard anything about the results of yesterday's MRI, and I don't want to see the images until I'm sitting with the neurosurgeon who can interpret them for me and give me advice on what to do next.

I hope to be able to start sharing my presentation notes and ideas soon, it will be good to have a project to work on, other than the one of trying to improve my health.

Updates on my thoughts and experiences will continue to be posted at www.neuroboob.blogspot.com