We’re not Gonna Take It!

“I call these photos: Being a Rebel” 🤣😂🤣

I love this song. I’m referencing it because it feels pretty good to have a few Doctors who are working with me and helping me figure out what’s wrong. As for the rest of them… I’m done! The only one left to find is a good Primary Care Doctor, and I am going to go to Northwestern for that. I think it makes the Doctors job easier and my job easier for them to have all of my current records available. I can’t keep traveling with a binder of test results and diagnoses to try to convince these doctors I am in pain. I have to travel over an hour to see these doctors now, but it is well worth it.

I received a letter in the mail from Northwestern today asking me to be in a research study.  This is the second one they have asked me to be in so far.   The first one is “Prospective, Observational Cervical Artery Dissection Registry.”  This new one is “Efficacy of Gadoterate in Diagnosis of Vascular diseases Using MRA.”  If these sound like they are in a different language I am pretty sure they are!

The first one is described on the paperwork I was given as, “We are asking you to take part in this research study because you have a cerebrovascular abnormality called cervical artery dissection that requires evaluation and/or admission to Northwestern Memorial Hospital.  This research study is a registry, which is a collection of observational information regarding patients with this abnormality.”

Basically, they will follow-up with me intermittently to check on my status, and are doing this with others with similar “abnormalities.” They will see how I am doing with symptoms and pain every few months.

The second one, which I just received an invitation to is described as, “You are being asked to participate in this research study because you are a patient at a Northwestern Memorial Healthcare Corporation entity, who recently completed a Magnetic Resonance Angiography (MRA) scan.  This scan was ordered by your doctor  to evaluate the blood vessels in your neck, chest or abdomen using the contrast agent gadobutrol which is the standard of care contrast agent at NMH.  Contrast agents are chemicals that are injected into a vein and which then travel through the bloodstream.  These chemicals act as dyes to make MRA images brighter.  An MRA is a type of magnetic resonance imaging (MRI) scan that uses a magnetic field and pulses of radio wave energy to provide pictures of blood vessels inside the body.”

I have gotten SO many CTs and MRIs/MRAs with contrast over the years.  It is how they have diagnosed all of my vascular issues, including this most recent one (they diagnosed my dissected artery with a CT with contrast).  I am weirdly excited that they asked me to participate in this one.  Not only do I get a free MRI, but they will also pay me $50 to participate.  #WINNING !! It says also in the notes sometimes they are able to diagnose unknown conditions with this study, and if they do they will notify me.  I will have the MRI/MRA next week, I figure if I can help out in some small way, especially in diagnosing vascular problems, you can sign me up!

#Onward!

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