VeDA has been a sanity-saver for me for 30+ years. I am a 73-year old 'retired' RN. In May of 1986, the month I turned 40, I came down with what eventually was diagnosed as left-sided vestibular neuritis. At the time I had been working in the operating room of a local hospital in the Seattle area and was traveling between several hospitals instructing operating room technicians.
My primary care physician thankfully took my symptoms seriously, but vestibular malfunction was not on his radar. After a CT scan he ruled out a tumor, but was uncertain of the cause of my imbalance and nystagmus. By that time I had also developed bilateral tinnitus and some autoimmune symptoms.
Multiple sclerosis (MS) was his main concern. An MRI scan was not available at that time.
I have no memory of how I learned about VeDA in those pre-internet days, but once connected I was able to order printed materials that explained vestibular anatomy and physiology and various afflictions of the inner ear and auditory nerve. For me, that was a literal godsend!
VeDA supported my sanity as I progressed through various medical encounters over the next several years. I was able to understand that what I was experiencing had a cause. I began repetitive motions to try and re-establish my balance and ability to function. Unfortunately, there was not yet a physical therapy protocol for vestibular recovery.
Once I had a general sense of what might be the problem, I connected with an ENT physician whom I had assisted on a particularly challenging surgery, which had established a rapport between us. He was interested in my symptoms and referred me to another ENT in the Seattle area who, after a caloric test, established the diagnosis. Other physicians, neurologists especially, were not so willing to accept the vestibular neuritis diagnosis, despite elimination of many other possibilities. There was an attitude of suspicion that I was faking my awkward gait and the other symptoms I was reporting.
After six months I was able to return to my job in the operating room position of my local hospital. However, I quickly discovered that my ability to plan and prioritize, once my primary strength, required extreme effort. In my usual role as the team member who organized all supplies and monitored the need of other team members as surgeries progressed, I was unable to move about the room without staring at the floor to maintain my balance. I would not have been able to respond quickly in an emergency when the usual protocols must be reordered "on the fly."
Again, VeDA materials bolstered my sanity. Detailed explanations of the vestibular-ocular functions was vital to my understanding of what I was experiencing. In addition, by then studies had shown that there are functions in the vestibular system that mediate prioritizing and organizing, not to mention word finding! Supported by my supervisors, I left my satisfying job behind and moved to a less intense position.
VeDA's mission of supporting those experiencing vestibular disorders and of educating the medical community has produced very encouraging results! Recently, a close friend has had episodes of what seems to me like BPPV. His primary care physician mentioned that possibility in his initial visit. Tests of other systems had proved negative.
My primary care physician is aware of VeDA. I have provided the VeDA website to many people over the years.
I am thankful for the support and resources that VeDA continues to provide to both patients like me and medical providers. I am especially grateful to those early folks who experienced the need and had the vision to form VeDA, and all those whose efforts have grown VeDA over these years. Well done!