Ma.. Ma… Ma… My Schwannoma! (Part 2)

Posted: November 1, 2015 in Experiences, My Schwannoma
Tags: , , , ,

I spent this beautiful Sunday morning getting my second MRI at Oregon Health Sciences University. I want to give those of you who are interested an update. Seriously, I’m not being narcissistic. I am not under an illusion that my medical details are any more interesting than anyone else’s. Please let me know if you are not interested in this stuff. Then I will respond by telling you not to read these because I’m really doing this mostly for myself. In other words, I help myself my explaining how I feel; I use this as the way to do that; and if you don’t find it interesting then that’s totally cool. That’s why God created categories and tags 🙂

A Political Digression

Sunday at OHSU makes me think that it’s probably only in a country with a relatively free market in medical services that one can even get an MRI on a Sunday morning; especially one scheduled only on the previous Friday. This speaks pretty highly of free-market medicine. That’s my plug for Libertarianism. At the same time, I must admit that when I’m about to get blasted with radiation from a linear accelerator, the last thing that should be on my mind is whether this particular facility, and this particular doctor, is or isn’t “in network” with my insurance. So, I have a bit of a more nuanced perspective on socialized medicine now; it would be nice to not have to give a shit who’s paying. But, if we had socialized medicine, there would probably be a 9 month queue for non-emergency MRIs not a 2-day one. So, basically, nothing is perfect.

Chapter 5: What We Did Today

Today’s MRI was different from the last one. The diagnostic MRI uses 3mm slices but for planning treatment they need more accuracy so they use 1mm slices. In my next post I will be able to show you the 1mm slices of my tumor. But, it occurred to me that I’ve never actually showed you the tumor at all. So… check this out:

Here is an MRI image of my head. At the top, you can see my eyes and nose.

Tumor CU1

You can actually see the tumor pretty easily in this image. But let me point it out to you.

Tumor CU2

I am not an expert and I absolutely never will be. But, I CAN see the tumor and I do understand why radiation is better than surgery. It’s sitting on my Trigeminal Nerve and my Carotid Artery is right next to it. So, a one-time radiation treatment works just fine for me!

Chapter 6: The Mask! (How cool is that? – Maybe…)

Before using the images collected today, my neurosurgeon and my radiation specialist will decide if they will use a frame that mounts to my skull or a full head mask.

If they use a frame then I will only have one appointment; there they do a CT, then a treatment design, then the radiation. Poof, I’m done, A frame will look something like this:


If they use a mask then I will have 2 appointments: one to make the mask and do the CT and a second for the radiation. The mask is potentially more accurate and looks like this:


As you can clearly see, the mask would be a better take-home reminder of the joy of radiation therapy. It is made from my own head and I can definitely be Freddie Kruger next Halloween!

I won’t know until I get a call from the doctors about which way the want to lock me into the crazy contraption. So, stay tuned for more mask-making fun and games (or not).

Chapter 7: The Magic Machine

They don’t use a Gamma Knife at OHSU. So I was wrong about that.  They use a linear accelerator (LINAC). In this specific case it is made by Novalis and I THINK it uses X-Rays not Gamma Rays (More to come in my next post). I’m not sure of the model but I believe it is a Novalis Tx:


Chapter 8: What Constitutes Success?

The bad news is that only 30% of Trigeminal Schwannomas actually shrink with radiation. This means that the tumor will almost certainly stop growing but the symptoms may never go away. There is a large body of research on Acoustic Schwannomas (on Cranial Nerve 8). But, Trigeminal Schwannomas are quite rare and there is very little data. It seems that Cranial Nerve 5 is rarely affected but, as you would  expect, I’m a special kinda guy. The one really good study – where the 30% number came from – indicates that the treatment is most successful in women (oops, not me) with small tumors (yay, me) that are diagnosed early (yay, me, again). That would mean that, other than being a guy, I’m in pretty good shape. Sadly, that whole study had barely over 30 patients so – like I’m always telling the kids when I judge the science fair – “that’s not statistically significant”.

The other thing this study noted is that,even when the tumor shrinks, the symptoms might not even noticeably improve for around 10 months. So, unless I’m REALLY special I may see and feel no change at all. This begs the question “why do it?” The answer is easy. While the treatment may not make things much better, it will stop them from getting worse. That’s a good thing. In other words, a successful treatment just means the tumor won’t grow anymore.

None-the-less… I like to think that maybe I AM REALLY special!

Thanks for caring enough to read these posts!

  1. Sharon Levy says:

    You are REALLY special to so many of us…you were before…you will continue to be in the future. Meshaberach….thanks for keeping us nosey journalists informed!!!!

  2. Indeed, thanks for the in-depth updates! Glad to hear of the high likelihood of a “cessation” of symptoms… and therefore, looking forward to the 2016 follow-ups and hindsight ruminations…

  3. Wendy dorband says:

    Lots of information to absorb. You are in our thoughts and prayers.

  4. Wayne & Linda says:

    Steve – You ARE amazing! and your writing makes a very scientific and tedious process INTERESTING! As we’ve shared with you previously, get healthy – our thoughts and prayers are with you during this adventure. Wayne & Linda

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