Where We Are

As you all probably know, we did a scan of the neck and a PET scan to see if that would give us any new leads as to what we can treat. The hope was that there was a small tumor in the neck called a paraganglioma but the results were negative for this. The PET scan also did not highlight any other tumors. Meanwhile, in order to rule out the Neuron Specific Enolase elevation as being a false elevation, the doctor repeated that test. Indeed, the NSE test was not a false positive as it was again over twice the normal number.

Where we are now is in a state of disappointment and frustration. While the idea of a tumor seems scarier, the truth is that it's not. Tumors are readily curable while at this point, the other disorders we're looking at are more treatable instead of curable. NSE can be elevated with certain cancers, diseases that are doing vascular damage and diseases that cause brain damage.

The next test they need to run is only offered at the Mayo Clinic, University of Toledo and somewhere else. Therefore, we're waiting to here when and where we're going for that. So while the lack of anything notable on the scans is frustrating, at least we still have some direction with the NSE elevation. We'll post more as soon as we know what's next.