Pathological Googling Sometimes Pays Off

Google. I love Google. I don't know what the world did before Google. Instant information at your fingertips about just about anything--including incredibly rare tumors.

I Googled. Oh boy did I Google. I Googled because it calmed me. Because it was some little thing that I could DO in the midst of a situation over which I was powerless. I Googled to find out about the tumor. I Googled to find out about the big words that I was reading that were about the tumor. I Googled to find other people who had had this same diagnosis. And I Googled to find a doctor.

It became nearly pathological.... Ok more than nearly. But here's the thing. My General doctor didn't know much about what I was dealing with. Surgeon #1 didn't inspire much confidence. It became evident fairly quickly that to make sure I got the care I needed *I* was going to have to become an expert. And so in the last few weeks, I have.

Eventually Googling turned up some names of doctors in other parts of the country who have performed the surgery to take out a Carotid Body Tumor. Then... Then I discovered something really cool.

If you have a weird diagnosis... a rare one... And if you send emails to specialists throughout the country with the name of your super weird and rare diagnosis in the subject line, an amazing thing happens: They answer.

After Googling my brains out trying to find someone who had been there and done that with this kind of surgery, and after learning more about the potential for a genetic mutation, and after wondering if there was a connection between my diagnosis and a tumor my uncle had had on his Adrenal gland some 15 years before, I finally came in contact with folks who knew a bit about paragangliomas. Two separate folks said the same thing: Get thee to NIH in Bethesda. They'll take good care of you. They named a doc there who actually specializes in these rare growths.

And the magical Mr. Google found me his email address.

I wrote the email. I hit send. And not three minutes later I had a reply asking for my phone number so he could talk to me himself.

He called about 10 minutes later and in one 10 minute conversation, I got more information than I had the entire week and a half prior. Also, he immediately offered to take on my case. NIH is a government run clinical research center. If you get accepted into one of their studies all medical procedures--surgeries, tests, whatever are covered. Travel expenses, however, would be our responsibility.

The NIH doctor has the big picture. He knows that younger patients often carry a mutation. He does extensive screening and follow-up.

Basically the chance to be seen by the number one experts--the folks who had seen more of this type of tumor than anyone else in the country--fell into my lap.

So what are we doing with that???

Well right now, we're leaning towards heading there for treatment after baby is born. I have been assured that I will be accepted for the study. The delightfully Polish doctor told me "NIH will accept you by 100%!"

That means quite a haul for surgery: from one coast to another, with a newborn. We have friends and family in the area. That's a perk. It's kind of overwhelming just thinking about the fact that I have something rare enough to consider coast to coast travel for treatment. That is the front-runner for options. We're not closing any other doors though. I have a referral in to see someone in Seattle. If I get a good feeling and a sense of 'big pictureness' there it might still be an option.

It is comforting, though, to know in the end I have an expert... Perhaps even THE expert, looking out for me and interested in making sure I get the best treatment possible.

I don't care which coast we're on when we kick Tomas out for good. I just want him to go!

This then is where Pathological Googling has it's rewards.