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NYU – Yale PTSD Brain Imaging Study

Diane
Getting My Head Examined: A Medical Research Study Experience I participated in a brain imaging medical research study with the purpose of imaging the Kappa Opioid Receptors (KOR) of the PTSD-affected brain. The study was conducted by the New York University School of Medicine in collaboration with Yale University School of Medicine; the NYU investigative team was headed up by Dr Alexander Neumeister, Principal Investigator. So here’s the story of how an anxiety-ridden girl went all the way from Phoenix, Arizona to New York City just to have her head examined. If you are interested in participating in clinical research studies pertaining to

Brain Imaging Study Day One: NYU

Diane
I was to present at NYU at 9AM sharp. I forced myself to leave my room to get some breakfast before I procrastinated until it was too late to do so…something I do on a very regular basis. I was exhausted and nervous, even more than my own norm. As I checked out of the hotel I wanted to ask the woman at the desk how to get a cab, but was too embarrassed to do so – so I reached back…way back to my Sex in the City addict days, rolled out the front doors to the edge of

The Nauseatingly Long Road to New Haven

Diane
The taxi transporting me from NYC to New Haven was white with pink lettering, and to my relief the driver was a woman. Tall, friendly – “Hi, I’m Renee, nice to meet ya, let’s get ya going here” – with the strongest down-to-earth vibe I think I have ever felt from anybody. I wish I had been more ‘with it’…but on top of being anxious, I started getting carsick on the nearly three-hour journey there. I leaned my head back and breathed while counting…in one, out one…in two, out two…while occasionally thinking to myself “Oh god this lady is so

Yale School of Medicine – Let the Scans Begin

Diane
I left the hotel in New Haven by 7:15AM the next day; my MRI was scheduled at the Yale research facility for 8AM. Just as I had to do in New York, I checked out of the hotel and carried my belongings along with me to the research facility. I packed light – but not light enough. A single backpack would have been ideal, because I was never able to settle down in any one place for very long before it was time to move along again. As I entered the building it was empty except for the lone security

Prepped for PET

Diane
The waiting area was a small alcove off the main hallway, with three hospital style recliners, small side tables that were covered in magazines and a couple of houseplants that were in dire need of watering. On one wall was an elevator – and the other was one giant window to the outside; we were on the second floor, and I could look down on to the busy street below. Like the MRI center, it was quiet and cool – it had a little more activity, a few people walking back and forth, but for the most part it was

Radiation Education

Diane
Unfortunately for the staff, I ask LOTS of questions. 🙂 Here’s what I found out: I would be receiving an infusion of an experimental radioactive compound – also referred to as a radioactive isotope or “radiotracer” that carries a radioactive tag. The radioactive drug would attach itself to a specific protein in my brain; the PET scanner is used to detect where the radioactivity goes – showing exactly where these receptors are located in my brain. The compound is not approved by the Food and Drug Administration for marketing, but is allowed to be used for research in humans. The

Arterial Line Time

Diane
Brenda gently yet realistically prepared me for the arterial line placement – it would be uncomfortable, and there would be a good chance that they wouldn’t be able to place it on the first try. They would try up to three times on each arm – with my permission, of course. The insertion area would be numbed with a local anesthetic to minimize pain during insertion; the arterial catheter itself would be about two inches long. Once the line was successfully placed, my arm would be strapped to a splint to keep me from moving it. The anesthetic would wear

Final Prep – Let’s Do This

Diane
11:45AM – I still had almost three hours until my scan was scheduled to begin. I brought out my phone to play a game of Candy Crush, only to discover that one-handed smart phone operation is kind of a pain in the ass. I put it away. I decide instead to lean my head back, rest, and focus on my breathing because I’m starting to feel that familiar knot in my chest, right behind the base of my sternum. Over the next couple of hours Brenda pops in every so often to flush the arterial line and check in on

The Long, Miserable Journey Home

Diane
In the quick fifteen minutes it took to get from Yale to the airport I manage to check my phone – and see a message from US Airways: “Your flight has been delayed…” I stare at my phone for a minute letting that sink in. Wait. What? That’s a 50 minute delay, and I only had 40 minutes between flights to begin with. I toss my phone back into my bag, too burnt to process the information. I have ten minutes to breathe before we get to the airport. I’m going to use them. Way too soon we arrive at

Invitation to Participate in PTSD Drug Trials!

Diane
I’ve been going ’round and ’round in circles in my head over the past few days…and getting nowhere. The results from the brain scans are still sinking in, and have me wondering if it means that I’m going to feel like this forever… I’ve been invited to participate in two drug studies this fall, which should have me excited – and it does in a way – but other ways it has me scared. Again, no meds at all prior to the trial, so I’ll be going through the insomnia/nightmare dance all over again with no option for relief. And

Off My Meds – Round Four

Diane
2014 has been a challenging year – and that’s putting it mildly. Due to my continued participation in PTSD Research, I am now once again officially “Off my meds” for the fourth time. It isn’t easy. Having been treated for years with these drugs to help with depression and anxiety, it’s like being a yo-yo. I can’t do this much more. While I understand why this research requires a pharmaceutical-free brain, as I sit here in a constant state of anxiety with nightmares starting to return, at times it is a struggle to keep the faith. I do this because

NYU – Pfizer Drug Trial: We are a go for launch

Diane
So the dates are set, tickets are booked and I’m a ‘go’ for launch. And I’m more than a little nervous. As some of you are aware, I took part in a clinical research study several months ago. In a collaborative effort between NYU and Yale, I underwent a series of extensive physical and psychological evaluations as well as MRI and PET scans of my brain. The resulting data reaffirmed my previous diagnosis of chronic, treatment-resistant PTSD. The brain images revealed the presence of specific biological changes in the brain itself which are the direct result of experiencing extremely stressful

The Nightmare(s) Before New York…

Diane
Three more days until I depart for New York, and I’m not sure if what I am feeling is nervousness, excitement or anxiety. Probably a mix of everything. I want time to stop and speed up at the same time! As much as I dislike taking my routine medication, whenever I go off of it I am reminded as to why I am on it in the first place. Amazingly enough I’ve been able to fall asleep without too much of an issue lately, however the nightmares have been kicking my ass for the past few days. My parents keep

NYU – Pfizer Drug Trial: Scared Shitless, Beyond Ready

Diane
Tomorrow – off to New York for my first round of PTSD-specific research medication. As nervous as I am, I feel so incredibly lucky to be able to participate. It’s been a very long road getting to this point. Thousands of miles travelled, extensive psychological and physical workups, brain scans…but it has been as validating as it has been exhausting. TEN MONTHS of planning and preparation. I have been taken off and put back on my medications FIVE TIMES due to false starts. I am fried. But here I am, FINALLY. After all this time, all the delays, all the

NYU – Pfizer Drug Trial: Screening

Diane
Screening went quick and painless today. Got the full work up again, they took some blood samples and cut me loose for the day! I’m proud of myself…I didn’t just hole up in my room! I hopped on the first train I could and ended up at Times Square, then headed down to the 9/11 Memorial which was absolutely beautiful. I have a free day tomorrow, and “the big day” is on Thursday – the day I first start the meds, more brain scans and triggering sessions. One thing at a time though…I’ll be enjoying a nice, quiet night in