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comment by katakowsj
katakowsj  ·  4353 days ago  ·  link  ·    ·  parent  ·  post: Are we moving towards an era of communication through pictures?  ·  
I would expect that excercising our shutter fingers could only better develop our sense of how, when, why and with whom to share our images. I can see it in my four year old son slowly developing his own abilities as a shutterbug in this last week. He's now got a Lego camera that is now packed with sixty or so images that he's been collecting. He's success rate with capturing clear images is only about twenty percent right now, but of the pics he's grabbed successfully, he's immensely proud to describe to what he has been able to capture.

In additional and very emphatic agreement, it looks as though my life has been prolonged and a great deal of quality to my life has been presevered due to improved image sharing that could have easily lead me to make some very poor decisions about my health. Turns out that some slight neurological oddities had been occurring to me for the past five months. These culminated on my front yard one day two weeks ago as I had a full generalized brain seizure. Turns out that MRI imaging revealed I had a slow growing low-grade glioma type tumor. A very important image to me. The tumor has now been resected. Thanks to MRI imaging during the actual surgery, there is high confidence that maximum tumor matter was removed and I will also be having follow up treatments and MRI imaging to keep this cell material at bay for the maximum time period.

Now, though I'd like to express what I feel is the most touchy and slippery part of using imaging to communicate. From this brain tumor experience, I am confident that I was one second opinion away from being unable to ever post this experience as I am on hubski. I was one "yes, I agree doctor" from having a total gross resection of my entire right temporal lobe, based on that doctor's best interpretation of my initial MRI images. I had a very honest, hardworking, and earnest neurologist suggest to me that my current condition was immediately life threatening, I needed to be on relatively high levels of cortico-steroids immediately due to a swelling threatening lesion in my brain, I likely had other tumors around my body, and he felt his surgeon, at an excellent, small suburban hospital, should begin quickly to remove the lesion and as much surrounding material they could sacrifice.

Fortunately for me, I had images and information that I began to share. This is what allows me to continue to be who I am and continues to amaze me as I recount it. My brother has worked at the Henry Ford Neuroscience Research Center for ten or more years. I clearly remember sitting at my desktop with the image CD that the MRI center gave me. I opened the images and, not knowing what to look for, knew enough that assymmetries were probably not good. I found an asymmetrical density in my right anterior temporal lobe region, added the pics to my drop box, got on the phone with my brother and started to come up with questions. This initial fact finding got us up to why or what and then lead him on to sending it to an informed radiologist friend of his. All of a sudden the ball was in motion. Information in the form of picture images was beginning to change the direction of my life. Not that I wanted it to, but the alternative to doing nothing did not look any better.

This image sharing made all the difference. As I sat in that small suburban hospital and the folks dedicated to my care worked in earnest, it turned out that not a single one had had the necessary experience to diagnose what my condition has actually turned out to be. I hold no ill will against them, they did not know what they were looking at.

On the upside, I left that hospital with an appointment the following day at Detroit's Henry Ford Hospital (professional grade people that care, from orderlies, to the chair of neurosurgery). Turns out that the images I shared with my brother were then shared with some people that had likely dealt with this type brain tumor before. Their intuition was dead on and within minutes of my meeting with two well informed men I was absolutely convinced I was speaking with the right people. I had a surgery scheduled, a thorough description of the tumor, that from the imagees alone has proven to be 90% correct as of actual tumor pathology reports, this was the primary tumor and cause of my neurological concerns, and I was not in immediate danger of edema related intracranial pressure. The tumor has been growing for somewhere around ten years, low grade gliomas like to be persistent and attempt to return. I'll be recieving chemical, radiation treatments, and possibly on the long horizion, some form of gene therapies or vaccine possibly. It's very early to speculate much on this, but thanks to some images, but more importantly, having those images in the hands of folks that can interpret them best, my outlook on my future life has improved dramatically.

In time, I expect my four year old son, Robbie, will also see how he can get better collecting and sharing images as all people will. From my vantage point of life right now I've gotta say that the interpretation of an image carries far greater weight than I could have imagined. I came out on the better end of what could have been a bad situation had I gone along with the opinions of those that thought they knew what they were looking at rather than those folks that instead recognized complete familiarity and knowing of the images that were presented to them.

I can see from the images of my stapled head I sent to friends and family immediately following my brain surgery, I'll be excercising my shutter finger more as most everyone in the world. Sharing images is easy, fun and creative. I'll now never be able to underestimate though how interpretations of images can so dramatically change possible outcomes that so often we may not have an awareness of.

In the meantime, as I progress back to middle school math/science teacher mode, rather than dude surving tumor, I'll always have a deeper consideration for demonstrating to all kids that are willing to listen of how important our critical thinking skills are to our human condition. I expect to have a great deal of fun.

Jeff





b_b  ·  4352 days ago  ·  link  ·  
First off, don't ever go to that suburban hospital again! Its a shithole of the highest order.

But, more to the point, there is an interesting qualitative difference between images captured to commemorate an experience, and those captured for exploratory reasons. Namely, one tries to freeze reality in a still, take the information that we know exists and approximate it on paper or screen, albeit never perfectly. The other peers into the unknown and leaves us with more information than we began. Herein lies the problem. What to do with the information once its obtained?

I think this is where good old fashioned hard work counts. Technology can only take us so far. There is nothing better about an MRI scan that one would obtain at the smallest diagnostic center in the middle of nowhere, and one that is obtained at a large, teaching hospital. So what is the difference? I think it is this. A world of images that lack any creative people to interpret them properly is useless, a barrage of information that might as well be a commercial or a Jackson Pollack painting. Let's be grateful that we don't live in that world. Hopefully, you can use your experience to inspire a few of your students to study hard to become the next generation of creatives.

katakowsj  ·  4352 days ago  ·  link  ·  
Couldn't agree more about the unmeasureable degree of necessity proper interpretation takes on when viewing images, especially those of an exploratory type. Knowing an interpretation of an exploratory image to be of high and beneficial quality falls solely on the interpreter and the belief of the individual for which that was interpreted. "Buyer Beware" is the closest approximation of which I've been able to reproduce the meaning I am attempting to convey from my recent experiences. I chuckle and thank you for the opening statement of your reply. I unfortunately cannot agree wholeheartedly. I will agree that for those individuals with low grade glioma type tumors seeking experienced, advanced, and technologically forward treatments, please stay away. This is not your place. They will work in earnest on your behalf to get you the right treatments. This suburban hospital will do what they can within their limits. Unfortunately, as people will, they will also offer to venture into fields in which they have limited experience in order to solve what afflicts you. Unfortunately, this could end you. Fortunately, if you listen carefully, critically ask questions, and consult those around you that do have the experience, knowledge, and skills, you will most likely find a better resolution to the problem at hand. Fortunately you will find yourself as I did on April 13 at 9AM sitting in front of the very best people in the world suited to handle step one of my low grade glioma problem. It's teamwork that really may be the key to quality interpretation. One neuro-oncologist, one neuro-surgeon, my brother a cancer research specialist, and my wife (acting as my advocate and B.S. checker) that finally brought it together. Thoughts in that room moved forward unabated as each person took turns to contribute their expertise and no more. Pure information interpreted and delivered via confidence and experience. Likelihoods were discussed. Certainties were made clear, and possibilities of the future were mapped as well. The sum of the whole being greater than the parts. It was a beautiful thing. I look forward to seeing more of it in the future. Take care.

Jeff

b_b  ·  4352 days ago  ·  link  ·  
P.S. I've been to that hospital many times, and my aunt is a nurse there. You are right to temper my words; its not that bad, but I wouldn't go there for anything too serious. Too many bad experiences over the years.
b_b  ·  4352 days ago  ·  link  ·  
    One neuro-oncologist, one neuro-surgeon, my brother a cancer research specialist, and my wife...

And one patient. Don't underestimate yourself in your treatment and healing; the team is very incomplete without you. Despair is easy to come by in these types of circumstances, but its toxic. I'm not really a cancer guy, but I know a lot about brain healing in general. I can tell you with all my confidence that thinking positively, any kind of exercise you can get, even really light exercise (in fact one study showed that just imagining oneself exercising had a positive effect on recovery from brain injuries), and really, just trying to have as good of an attitude as you can are some of the best medicines out there. I can sit here on my couch and say all this like its easy. Of course its not. But stay positive and confident, my friend.

ecib  ·  4352 days ago  ·  link  ·  
Amazing post Jeff. I think it's fair to say that in your case, a picture was worth far more than a thousand words.