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Cushing's Awareness Challenge - Day 8

Today is Harvey Cushing's Birthday - which means today is Cushing's Awareness Day! Harvey Cushing is one of the fathers of modern neurosurgery.  He studied brain tumors extensively.  You can read more about him here.

So, let's talk more about Cushing's.

Over the next few days, I will be writing about the different elements of Cushing's, like medications, surgeries, diagnosis, testing, and what to expect once you are treated.

Today, we are going to talk about diagnosis and testing.

For most patients, testing will include midnight salivary cortisol, 24 hour urine free cortisol, MRI, and for patients with a suspected pituitary source, inferior petrosal sinus sampling, otherwise known as IPSS.

For me, I only tested "high" on 24 hour urine free cortisol tests, which are exactly what it sounds like.  You pee into a jar for 24 hrs, then the lab measures the amount or cortisol excreted over that period of time.  I always liked to do these on days where I could mostly stay at home, because who likes to carry a big orange jug everywhere?

Most people have the best luck with midnight salivary cortisol tests.  Again, just like it sounds.  You chew/suck on a cotton thing at midnight or close to it, until it is fully saturated, then mail it to a specialty lab.  The reason why they have you do it at midnight is most people's cortisol level would be 0 or close to it.  Cushing's patients will likely have high cortisol at that time.

I did have dexamethasone suppression tests, but these are being used less and less, and in a different purpose, so I'm not going to talk about those today.

I had an MRI ordered by my gynecologist, which showed a pituitary adenoma. At that point, I already suspected I had Cushing's, so this was a game changer for me. I was able to go to MGH after those MRI results.  For me, MRIs are not too bad, but unpleasant.  I always suggest taking Benadryl beforehand if there will be someone to drive you home.  It helps me relax, and being a little sleepy doesn't hurt either.  I try to keep my eyes closed from the second they strap my head in.  Most MRI machines will have mirrors so you can see outside of the machine, but I find this just disorients me, and dizziness on top of claustrophobia is not fun.

Sometimes they will let you listen to music, so always ask! I always tell the person doing the test that I want count downs, so in between each sequence they will tell me how long the next one will be, and how long until we are done.  It helps me to think, okay only 30 more minutes, I can do this.

I had an IPSS almost immediately following my diagnosis.  I would say the IPSS was "worse" than my actual pituitary surgery, but maybe it was only because I had this first.  I just remember it as a super stressful day. I was very nervous that the UFC I had to do the day before wouldn't be high, which meant I couldn't have the IPSS.  Then I was worried about the actual test, and what would happen if it didn't confirm a pituitary source.

The prep and recovery was worse than the actual procedure.  I was laying practically naked on a table while they got ready to insert a catheter into my femoral vein.  I didn't feel that, but I do remember feeling the catheter as they tried to get it past my jugular vein.  They were having me tilt my head, and were moving me around.  I was sedated a little bit for this but was still awake.  There was a stretcher next to me just for blood samples, which they took every few minutes from multiple places. (I don't remember exactly, but I think from both arms, maybe from my jugular vein, and from the petrosal sinus).  I remember being so hot and nauseated as they withdrew the catheter, and it didn't help that someone was putting their whole body weight on the incision site to help it clot.  I had to lay flat for 2 hours afterward, and that was probably the worst part.  Luckily, this test turned out to be obviously positive for a right sided pituitary source of ACTH, which was where my tumor was, so I had surgery about a week later. More on that tomorrow.



What was the easiest and hardest part of testing for you?





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