Please read our Introduction first.

After deciding to go to the ER that Saturday afternoon in January, Matt was given an MRI.  It seemed to last forever.  He recalls them pulling him out of the MRI to adminster contrast and being told to hang in there for the next set of images.   At that point, the radiologist probably already knew.  After being taken back to the patient room, we recieved the diagnosis.  The ER doctor told us that there was a lesion near Matt’s brainstem that could be a clival chordoma.  He presented us with the MRI and pointed the lesion out.   Matt said he didn’t believe it.  We were both in shock.  How could he have this thing?  Why does he have it?  So many questions…

The ER doctor was honest with us in that he didn’t know a lot about the diagnosis.  He could tell us it was not “brain cancer” but more bone related and rare.  He  said he thought it would be better to speak to a neurosurgeon.  This worried us, but looking back, we have learned that it is better to be referred to a better source than to listen to the wrong opinons.  The ER doctor asked us to schedule an appointment  first thing Monday with a local neurosurgeon in our small town for follow up.  He told us not to do too much research online over the weekend…  Before we left, we asked for a print out of the MRI report and the a picture of the tumor.   Matt put the picture and report on our fridge.  It was a very surreal evening – we never thought our fridge full of photos of friends would be host to an MRI print-out showing a tumor in one of our heads.

We spent the rest of the weekend stressed out, confused, and depressed from what we found online about chordomas.   After a few pages of online reading, Matt decided he wasn’t going to look at anything else.  I give him credit for making that decision as I couldn’t resist researching.  It is very hard to find good information on chordomas online and to find it, you will end up sorting through a lot of old information, misinformation, confusing information, and depressing information.

When you google “chordoma”, the first website you will find is the Chordoma Foundation.  It is a good source of information and we did refrence it a few times in our research but the first thing you will want to click is the “about chordoma” link.  When you click that link, the next thing you will read is that you have 7-9 year life expectancy.  It’s about the worst thing someone newly diagnosed could ever read – and although I’m not an expert, I can’t imagine it is an accurate statistic for all with how rare this tumor is, how different each tumor is, how different each person is, and how different everyone’s treatment is… either way, we are determined to prove it wrong.  Check out our Online Research Tips page for more if you are newly diagnosed.

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