[Note: Feb 18 2013 — new update with higher resolution pictures and additional data.] In my professional work, when someone publishes a paper that is heavy on tables (or plots) of data, but thin on serious analysis and interpretation (eg, “what is all of this data telling us about such-and-such star or galaxy?”), we often refer to such a paper as a “data dump”. While data dumps are not necessarily bad (if the author chooses to not dig deep into the physical implications of the data, then at least by making the data available to others, someone else might be able to make more sense of the data), the term “data dump” is somewhat derogatory.
With that background provided, I hereby confess that this post is a bona-fide data dump. And I hope that it becomes a sort of data depository, as others begin to read my blog. You see, in the embarrassingly vast amounts of time I have spent over the past several weeks researching all things related to MS and eye conditions, one thing that I have found myself wishing to see more of, is other people’s data. I need comparisons! How does my MRI stack up to other MS patients? How does the thicknesses of my retinal nerve fiber layers, or even the pattern of the thinning (more focused on the superior, inferior and nasal side, not so much on the temporal side) compare to those suffering a demyelination condition versus glaucoma? Sure, I read what medical papers I can access over the internet for free, but even in those, what I usually end up seeing the extremes rather than the “typicals”. What I hope is that this post becomes a depository for links to other MRIs and OCT scans, by MS patients and others who are dealing with eye problems. I think the comparison would be of great utility, in helping to establish an independent baseline for what is and is not normal, for various stages of disease. Please consider sharing your data, by posting a link to your images, from this page.
Without further ado, below is my data. The first is my most recent OCT (Optical Coherence Tomography) scan, the second is the comparison between my 2012 and 2006 MRIs. [NOTE inserted Feb 18, 2013: After looking back at this post, I realize that the pictures of the test results are too blurry to be of much use to anyone, so I have removed the old pictures and replaced them with much clearer (higher resolution) ones. I have also added additional pages that came with my OCT scan — I was really only interested in nerve fiber thickness, which is the first image below, but in case my readers are more interested in seeing measurements like macular volume or ganglion cell thickness, I am including them below. Any blue font below represents edits I have done since the original posting]
The above is a measurement of retinal nerve fiber layer thickness. Just a few notes about the OCT scan above: Left on this figure indicates the RIGHT eye, right indicates the LEFT eye. The circles at the bottom indicate thickness measurements taken around the optic nerve (as I understand it). Green means normal thickness, yellow means a bit on the thin side (as compared to a healthy eye), and red indicates significant thinning (only
5% 1% of the population of my age group would have comparably thin measurements). The top table states the average thickness for each eye. In this scan, my right eye had an average thickness of 57 microns, the left had 69 microns. (About the thickness of a strand of hair). From what I have read, the average thickness in a healthy eye is about 100 microns, and at least a couple of articles indicate that visual function starts noticeably declining at 70 microns. Yet my visual field tests do not indicate any problems. (I have included the visual field tests in this later editing session — see below for the results)
The above is a measurement of the ganglion cell thickness. I don’t know much about this measurement, but all the red in my right eye can’t indicate good news.
The above is a measurement of the Right eye macula, in terms of thickness and volume. I know even less of what this measurement indicates. Given that there is only one section that is not green, I’m guessing that my right eye is doing OK in this regard.
The above is the same macula-related measurement as the previous picture, but for the Left eye. All green here means “good”.
While I’m at it (editing, that is), I decided to include some of my visual field tests, in case anyone who knows a lot more about this stuff than me would be interested in how the above red/bad areas correlates to visual field defects. The visual field test involves looking into a dark box, staring at a fixed point, and clicking a button whenever a flicker of light is seen. From what I can tell, my visual field in both eyes looks pretty good, esp. given how thin my RNFL are. In these tests, darker areas are bad (they indicate areas in one’s visual field in which fewer light flickers could be seen — in other words, such areas are “blind spots”). Note that for both eyes, there is a prominent blind spot to the right and just below centerline for the right eye, and to the left and below centerline for the left eye. Those blind spots are completely normal and everyone has them — they correspond to the center of your optic nerve, where you can’t detect light. The brain magically “fills in” the gap in our vision, so that we hardly notice we have a blind spot there!):
First, my right eye visual field:
and now the left eye:
I felt that my MRI images in the original post were even more difficult to read because of their poor resolution, so I’ve now substituted them for full-resolution images, in case anyone is wanting to see the details so that they can do comparisons to their own MRI images (or maybe you’re just into looking at brains. I’m here to provide data, not to judge.)
IMAGE “A”: The above image was taken in 2006, the red and yellow lines point to 2 lesions in the left side of the brain (like the OCT scan, the left and right side convention seems screwed up!) More to say about these 2 lesions, in some of the images coming up (just remember the color-coding of the lines … the yellow line is the top-left lesion and shall be referred to as the “yellow lesion”, the red line is the lower-left lesion).
IMAGE “B”: This image shows a deeper slice in the brain than in Image A, where a lesion on the right side of the brain (left side of this image) can be seen. This lesion will be referenced in the following images using a blue line.
IMAGE “C”: The above image was taken in 2012 using a higher-strength MRI (3 tesla, as compared to the 1.5 tesla images taken in 2006, shown in images A and B). Note that the yellow and red lesions seen in the 2006 MRI, over six years ago, are still there (the yellow lesion is more prominent in a slightly higher slice, which I failed to capture a separate image of. Trust me, it’s still there.)
IMAGE “D”: 2012 MRI, at a deeper slice depth than Image C. The blue lesion seen in 2006 is still quite visible here. This lesion has an odd appearance, as compared to the others, however … it looks more like a ring than a solid circle. Odd. Now that I go back and look at the 2006 image, I see that this lesion sort of had a ring-like appearance then, as well.
IMAGE “E”: 2012 MRI, showing a “sideways” slice. The orange-colored lines point to lesions (probably the same ones seen in Images A through D, taken at a different angle) that somewhat resemble “Dawson Fingers”.
IMAGE “F”: Another MRI taken in 2012, but using an “Open MRI” with a strength of only 0.75 tesla. I include this image only to make a point: don’t waste your time with an open MRI, if the main objective is to look for MS lesions. My primary care physician, who was doing his best but apparently didn’t know any better, ordered this MRI. My neurologist, whom I saw a few weeks after this open MRI was taken, wouldn’t even look at it! She immediately just put in an order for a 3-tesla MRI, and encouraged me to never again waste my time again on one of these open systems. Just compare this image with the previous one (Image E). You can see for yourself that the stunning detail present in Image E is completely lacking in this lower-power image.
IMAGE “G”: This image was taken “with contrast”, meaning that I had an injection of “dye” right before this picture was taken. In images “with contrast”, active lesions show up, helping the doc to differentiate between old and new damage. My brain was free of active lesions at the time of this MRI. However … the red lesion that shows up brightly in the images without contrast shows up as a dark spot in this image. Such spots are referred to as “black holes” (very different from the black holes I may write about in future posts!). Black holes in brain MRIs are allegedly a particularly undesirable feature, as they indicate that not only has the myelin been destroyed, but the axons themselves. None of my neurologists have pointed this possible black hole out to me during my office visits, but I think I will ask about it at my next follow-up, to make sure that I’m not just making an amateurish mistake about what this feature really is.
IMAGE “H”: This MRI image was taken in 2006. I include it because it does suggest that I did indeed have some lesion “activity” at that time, despite what the MRI report stated. I am fairly certain that this image was one taken “with contrast”, and the blue lesion that appears in the without-contrast images does show up as a white spot here. I wonder how the radiologist missed this? Or am I mistaken in my believe that this image was taken “with contrast”?
IMAGE “I”: Part of the series of 2012 3-tesla MRI images, taken at a deeper level than Image “D”. I include this image because I discovered this lesion that had been previously overlooked. (See pink line). The lesion is in an odd place for MS, based on what I have read. I wonder if it is an example of a spot caused by migraines, instead? In any case, the MRI report makes no mention of it. Maybe it is just an artifact?
In the MRI notes, I forgot to mention that the lesion in the yellow circle also seems to correspond to a “black hole” in the MRI-with-contrast (the image in top row, to the right of the image with “2012” written in it). [Disregard, refers to an image in the original post that has now been replaced by above images]
Well, now you know what I know: my eyes have experienced significant atrophy (yet I do not currently suffer any visual disability), my MRIs have only a couple of lesions that have been there for a long while, and that the lesions have a “Dawson’s fingers” appearance seems a bit “iffy” to me (compared to other examples I’ve seen in the literature).
I have decided to stop taking Copaxone during the holiday season, and wait until I have had my follow-up appointment with the MS specialist in mid-January, to see what she has to say in light of her review of the MRIs and recent blood tests. I have to say that I make this decision with a lot of uncertainty … what if even this couple-of-week delay could mean the difference between visual disability or not, in the future? Gotta dash to the airport now, to catch an eastbound plane. Happy Holidays!