Posts Tagged ‘Tumor’

All of you know that I’ve kept a really solid sense of humor since I was first diagnosed with a (benign) Trigeminal Schwannoma. I would not have had 6 previous posts with a title this lame if I didn’t. But I have to tell you that I’m not in the joking mood today.

After hitting this little fucker with a big dose of radiation a year and a half ago I expected this annual MRI to show an unchanged to slightly smaller tumor. That is not the case.

It no longer takes more than 2 seconds for me to show you the tumor on an MRI image.Here it is, looking up from the bottom of my skull:

Tumor MRI 1 Aug 17 Zoom

I’m not a radiologist but I certainly know by now that rule number one or two is to look for asymmetry. Not hard to find when you scroll through the studies. I’m good at that after almost 2 years.

You can’t tell much about the size but, if you look back a year, you can see that it looks about as it did before. If it were as before I would be a happy camper. Unfortunately it is slightly larger and I’m more than slightly disappointed. What I love about my doctor is that she doesn’t try to spin things. When I told her I was bummed she said “yeah, I’m disappointed too”. We were both surprised.

Schwann cells are not very radio-sensitive so this kind of tumor does not generally shrink. But it also does not typically grow. We can’t really tell if the tumor has grown or if this is still just post-radiation inflammation. The latter can actually go on for 2 or 3 years. That is rare but then I’m a special kinda guy.  Whatever it is, it’s slightly larger than it was a year ago.

Regardless, since I’ve been transparent about this all along, I just want y’all to know that this is a bummer and I’m having trouble today in keeping my humor up and running.

I’ve often been asked if they can do surgery and just remove it. The answer is that anything is possible but not everything is worth the risk.

First, if they did try to remove it they would almost certainly further damage the nerve. I’d still choose a numb eyeball over a numb face so there’s that.

Second, let me show you a picture I haven’t shared before. Here is an MR Image from the back of my head.

Tumor MRI 2 Aug 17

You can see the tumor on the right side of the image, Down below – all that shit that does not look like brain – that’s the base of my skull. The tumor is sitting in a little part of that area called “Meckel’s Cave”. Among other things that’s a bitch to get to. It’s also right where my carotid artery enters. It would sort of suck to accidentally cut through that.

Now… the easy thing to do is to use a Guillotine. The problem is that reassembly is tough (I told you my sense of humor about this sucks – that’s the best fucking joke I can come up with. Sorry.)

Interestingly, even among Neurosurgeons there are lots of sub-specialties. Apparently there are guys called “Skull base specialists” who have… like….. REALLY steady hands. They know how to operate down there. But that sounds about a million times scarier than having a room full of nice people shooting a linear accelerator at you for a few minutes. So, I’d vote “no” without a hell of a reason.

The good news is that Dr. Kubicky also votes “no”. She says that it’s difficult to believe that, with the dose of radiation I had, the tumor has really grown. She still thinks this is inflammation and wants to just keep watching it unless the symptoms change. For the first 2 years watching it was sort of fun. Now, now so much.

So, to summarize my rambling update: Next MRI is in 3 months. Until then, nothing much to do. I’m sure I’ll get over the bit of melancholia. In the meantime the only consolation is that I again have something to worry about other than politics.


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!