Part Two: “WTF is wrong with these doctors!?” – How I had to find my own help.
Do you remember that Abbott and Costello routine, “Who’s on first?”? Well that is how this visit with the neurologist went. He told me that the MRI showed no lesions or other signs of MS. Then he tells me that my results were mostly normal, except for a “small mass in the center of your brain”. More specifically, they found a marble-size mass on my Pineal Gland, which is geographic center of the brain.He then told me that this is a rare type of tumor and that they rarely cause symptoms, so it isn’t the issue. (This would be the first “wtf?” of many this visit.) Here is how the next portion of the conversation went:
Dr: It is an incidental finding. We will just monitor it with an MRI in a year or so.
Me: What does “incidental finding” mean?
Dr: Means we were looking for something else.
Me: Weren’t we looking for what is causing all of my symptoms?
Dr: Yes. But this is a rare type of tumor and they rarely cause symptoms. So it can’t be what we were looking for.
Me: (silent “wtf”)But some of these tumors do cause symptoms?
Dr: Only the rare ones.
Me: And I have the tumor and a bunch of symptoms that it could cause?
Dr. Yes. But your isn’t causing the symptoms. It is very rare that they do.
Me:(another silent “wtf”) So I have a bunch of symptoms that we have ruled out all other causes for? And I have a tumor that can rarely cause these symptoms?
Dr: Well, yes. But we are going to keep looking because this was just an incidental find. Not the cause we are looking for.
Me: (under my breath “wtf”) Ok, So what do we test for next?
Dr: Well, since we have ruled pretty much everything out, we will just have to manage your symptoms as they come and do a follow up MRI in a year.
Me: So we have ruled out everything? But we found a tumor!? How can you be so sure the tumor isn’t the cause? I could have a rare one. I have symptoms.
Dr: It isn’t the tumor. It was just an incidental finding.
As if that conversation wasn’t bad enough, I had to pretty much beg to even see the MRI of the tumor. He acted annoyed that he had to show me and had it on the screen for maybe 10 seconds.
I, of course, got a second opinion. And third. They were all equally as helpful and frustrating as the first. All insisted that this rare type of mass couldn’t be the cause of my symptoms, even though they could offer no other possible explanation at this point. WTF is wrong with these doctors!? I was lucky and found a group of amazing people on Facebook that have/had the same tumor as I did. Similar symptoms, similar stories. Through them, I found Dr. Patel and Dr. Kim, two of the leading specialists in the world for these kind of rare tumors. I contacted both and sent my MRIs and summary of symptoms. Both offices contacted me back within a week and suggested in-person consultations. In October of 2018, I went on a 1200-mile road trip to Charleston, SC to meet with Dr. Patel. He explained that these types of tumors can and do, in fact, cause issues. He not only showed me my MRI, but explained how the tumor could be pushing on other parts and causing pressure around it in my brain. For the first time, I felt listened to. Not disregarded as having mystery symptoms with no possible cause. He explained that the tumor was probably growing based on how quickly my symptoms had been progressing. He felt that it was careless of the other doctors to suggest waiting a year before even doing another scan. Any tumor that is symptomatic should be monitored every three months at least. He suggested surgical removal of the tumor and explained the procedure to me. I left there with thoughts racing. Thoughts of relief and hope. Finally, I can get real help. I’m not crazy. The symptoms are real. The tumor is real. Thoughts of hope turned to thoughts of frustration and anger. What in the actual f@&k is wrong with these doctors!? They were going to keep dismissing me until I was blind and in a wheelchair. How much bigger would the tumor have been in a year, if I was even still here? How could they not even consider the tumor as the cause? Is it really easier to let me continue to suffer than to admit that they might be wrong about the tumor? Too many of us get pushed aside and told to “manage and monitor”. Too many of us get told that the tumor isn’t causing the symptoms that we clearly have. There are doctors that understand these tumors and will help. We just have to take matters into our hands and contact them ourselves. We have to advocate for ourselves and listen to our bodies. I had a decision to make. One that I never thought I’d have to think about. I could have brain surgery to remove the tumor by the end of the year. I could have brain surgery. Brain surgery!? WTF!?
Stay tuned for Part Three: “WTF is wrong with these companies!?”- How I had raise money to pay for my own brain surgery.