Editor's note: The following is Patch Field Editor Russ Crespolini's, hopefully, weekly column. It is reflective of his opinion alone.

"One slip, and you're toast."

A doctor said this to describe a test my endocrinologist said I needed to get more answers about my brain tumor.

For those of you who have been following along at home, I have been documenting in my column my ongoing medical issue that included a myriad of tests all leading to the conclusion that I have a pair of tumors. One in my brain, attached to my pituitary gland and one somewhere else in the body, most likely in my lungs.

It, or they, are causing a biochemical imbalance known as cushing syndrome or disease.

The next step for me is an inferior petrosal sinus sampling (IPSS). The IPSS is an invasive procedure in which adrenocorticotropic hormone (ACTH) levels are sampled from the veins that drain the pituitary gland. This is done through what is apparently a really painful catheterization process. So, good times. They send the probes up into the brain through the groin to grab the samples.

They then compare the ACTH levels in the peripheral blood to determine whether the pituitary tumor is causing my issues. If it is NOT the culprit and it is an incidental finding, then we begin a hunt for an ectopic (mostly benign) tumor...or a malignancy.

In the interim, I went to my primary care physician for a physical and they suggested that I get a second opinion. So I went to see a second endocrinologist who reviewed my results, and described the IPSS test to me and followed it up by telling me that the test is dangerous because one slip and I am toast.

As in dead.

Cool.

He said it with no malice, he was just trying to make a point of the seriousness of what I was facing. Which I appreciate. But what he didn't appreciate was one of the things that had kept me sane over the past few weeks was the thought I was heading towards some kind of consensus and some kind of a resolution. Having that questioned left me feeling more lost and hopeless than I can remember feeling in a very long time.

Because now I was being torn between two completely different schools of thought. One was saying I needed to undergo this test, which came with risks and the other was that I just needed to keep repeating more conservatives tests every month.

In neither plan, was a path to treating my symptoms.

So I spent the weekend trying to figure out what to do next. My first endocrinologist was trying to find me a place to get the IPSS and the second doctor had me second-guessing the wisdom of that decision. And not matter how hard I tried to rationalize and explain it away, "one slip and you're toast" still kept repeating over in my internal monologue.

And then I made an accidental discovery. One of my earlier columns, a couple in fact, had been picked up by the an organization called the Pituitary Network Association. The PNA is an international non-profit organization for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and health care providers who treat them.

PNA was founded in 1992 by a group of acromegalic patients in order to communicate and share their experiences and concerns. PNA has rapidly grown to become the world's largest and fastest growing patient advocacy organization devoted to the treatment and cure of pituitary disorders. This was a nice discovery because my thoughts were being shared with other people who were going through something similar. It also showed me the power of this Patch network. But I also discovered that their network included experts.

I reached out to them and immediately got a response back that walked me through why I needed to find a specialist in this area and then gave me the name of one at Sloan Kettering in New York. The next morning, my doctor messaged me to tell me she found a specialist that can help me with this test and what comes after.

It was the same name.

So now I know where I am headed next. Sure, one slip and I might be toast. But I need to trust that these specialists won't slip.

Russ Crespolini is a Field Editor for Patch Media, adjunct professor and college newspaper advisor. His columns have won awards from the National Newspaper Association and the New Jersey Press Association.

He writes them in hopes of connecting with readers and engaging with them. And because it is cheaper than therapy. He can be reached at russ.crespolini@patch.com

More:
Russs Ravings: One Slip, And Youre Toast - Westfield, NJ Patch

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