Monsoon Season

Last Thursday I had a Petrosal Sinus Sampling. I went in there thinking it would be about an par with getting regular labs done...probably a bit more unpleasant than most but not terribly painful or laborious. I couldn't have been more wrong. It was as pleasant as it sounds.

This is what they say about it on Pituitary.org: This test is not always required, but in many cases, it is the best way to separate pituitary from ectopic causes of Cushing’s syndrome. Samples of blood are drawn from the petrosal sinuses, veins which drain the pituitary, by introducing catheters through a vein in the upper thigh/groin region, with local anesthesia and mild sedation. X-rays are used to confirm the correct position of the catheters. Often CRH, the hormone which causes the pituitary to secrete ACTH, is given during this test to improve diagnostic accuracy. Levels of ACTH in the petrosal sinuses are measured and compared with ACTH levels in a forearm vein. ACTH levels higher in the petrosal sinuses than in the forearm vein indicate the presence of a pituitary adenoma; similar levels suggest ectopic ACTH syndrome.

Sounds simple enough, no? We should know by now that when it comes to medical matters, nothing is ever simple. Going in I really had no idea what was going to happen. I thought they were going to go through my nose...seems like the most direct route to the pituitary. I could have been more wrong. They went through my ephemeral vein in my leg. The inserted catheters on either side of my groin area into the ephemeral vein and snaked it up through my kidney, through my heart and up to the jugular artery in my throat. Apparently everything from the brain drains down through the jugular artery. So they took 27 test tube samples. 27 different samples. Still, doesn't sound too horrific...unpleasant yes, horrific not so much. But you're forgetting who we're talking about here. This is me. When it comes to medical issues, nothing is every simple and nothing goes the way it should. So they "sedate" me. I was supposed to be heavily sedated but not out so much that they couldn't wake me easily. I was basically completely lucid through the entire procedure. I pretty much heard every word, felt every pinch. The "procedure" was supposed to last about 3 hours...it took them 2 hours longer. Why you ask? Because it's me and my anatomy is pretty screwy. The vein is supposed to sit beside the artery...but not me...no...my vein sits on top of my artery so they couldn't find it. They spent about an hour digging around in my lower right abdomen trying to find this vein until they called in the vascular radiologist with her uber ultrasound machine to find the vein. I've been laying on this table for about an hour when i hear the doctor (the chief of radiology) say, we still haven't gotten the vein, let's call in the vascular radiologist. AN HOUR!!!! All this time I thought they had been doing whatever it was they needed to do. So they get her in there and they eventually get the vein and once they had the uber ultrasound they didn't have any problem with the left side.

And let me remind you, i'm completely lucid through this whole thing. I can feel the blood stream down my right side and pool in my hand. Occasionally they give me more sedative which makes my nose itch..doesn't put me out just makes my nose itch to the point i'm ready to scream and i can't move my hand because i'm under a sterile cloth and they've got needles and catheters running through my major organs...you don't want to mess with that. So the nurse would occasionally itch my nose and i'd get sleepy for about 10 minutes until the sedative sort of wore off. They finally get the catheter up to my sinus cavity and start taking the samples. And every time they take a sample i can hear and feel a sucking noise. It doesn't really hurt it's just sort of gross. At this point i've been splayed out on this table completely naked in a room full of men with tubes and needles protruding from my body for about 4 hours. In my head i'm just thinking i want to go home, i want to go home - just get me out of here and let me go home and i start to cry. Not hard but there are tears and i start to shake. As they're taking the catheters out, not a very pleasant experience, they give me some more medication to stop me from shaking and help with the headache. I don't know what they gave me exactly...i think it was benadhryl (sp?) and a steroid but whatever it was my body did not like it. I started to shake even more and my legs and arms felt like they were swelling and i got pins and needles all over like i've never had before. I got nauseous and felt like i was going to throw up, what i'm not sure. I hadn't eaten anything in 24 hours. and my heart started to race and i couldn't catch my breath. They got the panicked doctor voice going on asking me what was wrong...and of course i couldn't coherently tell them what was going on but it passed in a few minutes. They finished pulling the catheters out and start to clean me up because i was basically covered in my own blood. They move me over to a gurney and push me out into the hall to wait to go up to short term recovery.

I'm sitting in the hall and i start to cry again. I'm still sort of shaking and i just want to go home. My right side is hurting and when i tell them this they act surprised. I'm just like...duh...what do you expect?! You were digging around in there for how long?! The nurse comes out and tells my mom that i'll probably be pretty sleepy because of all the meds they gave me...nope...i'm hardly sleepy at all. I wish i was. just sleep through all of this. And the meds were supposed to give me short term amnesia so i wouldn't remember any of it. No...i remember it all. I get up to short term recovery and i'm still bleeding and they have to clean me up again and they can't let me go until i've stopped bleeding. Eventually i do and they let me go home. They roll me out in a wheelchair and i can barely stand up. Driving home every single pot hole and bump in the road makes my body scream. And i get to go through this again in a couple of weeks...? we're HOPING that i have to have surgery. What is wrong with us?!

I'm still feeling pretty sore. I'm terrified of what the next one is going to be like. If they say it's going to be easy and recovery isn't so bad, there's no way i'm going to believe them. All I have to say is they had better put me out completely. Non of this "sedating" me...not knock.me.out. I don't want to remember or feel anything.

And this is what i have to look forward to....(again from pituitary.org)

Several therapies are available to treat the ACTH-secreting pituitary adenomas of Cushing’s disease. The most widely used treatment is surgical removal of the tumor, known as transsphenoidal adenomectomy. Using a special microscope and very fine instruments, the surgeon approaches the pituitary gland through a nostril or an opening made below the upper lip. Because this is an extremely delicate procedure, patients are often referred to centers specializing in this type of surgery. The success, or cure, rate of this procedure is over 80 percent when performed by a surgeon with extensive experience. If surgery fails, or only produces a temporary cure, surgery can be repeated, often with good results. After curative pituitary surgery, the production of ACTH drops two levels below normal. This is a natural, but temporary, drop in ACTH production, and patients are given a synthetic form of cortisol (such as hydrocortisone or prednisone). Most patients can stop this replacement therapy in less than a year. For patients in whom transsphenoidal surgery has failed or who are not suitable candidates for surgery, radiotherapy is another possible treatment. Radiation to the pituitary gland is given over a 6-week period, with improvement occurring in 40%—50% percent of adults and up to 80 percent of children. It may take several months or years before patients feel better from radiation treatment alone. However, the combination of radiation and the drug mitotane (Lysodren) can help speed recovery. Mitotane suppresses cortisol production and lowers plasma patients. Other drugs used alone or in combination to control the production of excess cortisol are aminoglutethimide, metyrapone, trilostane and ketoconazole. Each has its own side effects that doctors consider when prescribing therapy for individual patients.

I am not a happy camper right now.