- CASE FILE
Dec2016 i woke up with swelling of my neck & face.At its worst,the swelling will impact hearing,vision,clear nasal discharge & a wet cough.
ABOUT THIS CASE FILE
Since december 2016, after a severe sinusitis in november 2016, i have suffered from idiopathic positional facial edema. It is not a diagnosis. It's simply what it is. With the onset of the swelling, i had approx. 2 month of post viral symptoms, ranging from low grade fevers, night sweats, general pain everywhere around the neck and face area (eyes, ears, glands, lymphnodes, head ect. ), extreme fatigue ect. I have been evaluated by two neurologists, three ENT's, a Cardiologist, an endocrinologist, an allergist, a vascular surgeon, a rheumathologist and two internist’s - one of them a proffessor at John’s Hopkins Hospital. Four ER visits and one overnight stay for uncontrolable headaches. I had countless MRI's w/wo contrasts, CT scans w/wo contrast, xrays and ultrasounds. A stress test. Three nasal endoscopies. Allergy testing. Bloodwork on countless diseases. My heart, brain, lungs, kidneys, spleen and liver have been evaluated. We tried several allergy medicins, 8 weeks of several antibiotics, steroids, even heartmedication (diuretic). I have worked out, changed my diet, lost 40 lbs and saw an Osteopath for 4 month for osteopathic manipulations. All did nothing to help my situation. Painmanagment in the form of over the counter painmedicin is all i have now. I have been told i'm an extremely healthy person, yet i can not sit on the floor, sit on my legs, lean forward, knee down, hold arms above head, doing activities that require me to look down, cross my legs and especially lay down without having pressure build up in my entire head. I have been sleeping very elevated since going on 3 years. Waking up in the mornings i can see the fluid build up in my face, when very bad, around my neck and collarbone. My vision and hearing will be impaired. I will have a crackeling sound in my lungs and general tight feeling in my chest acompanied by a wet cough. At times, with positioning, my sinuses will swell completely shut. My mouth, gums, tongue, throat and the general area around my mouth will be puffy. The pressure of the swelling is painful, especially headaches. My swelling and pressure will slowly dissapear once i'm up and standing for a while in the morning. The headaches and neckpains are quick to reappear due to certain positioning of my body. I have no where else to go. Every single move and positioning i make, has to be thought about.