Could I suffer from Parry-romberg syndrome?
Hi, so I'm a disabled veteran and since 2016 I have been searching for the source of my left frontal facial pain, there is wasting on left side of my face, noticeable to point of a stranger in grocery store asked me if I was having a stroke, blurred vision in left eye which now know cranial pressure behind left eye, dizzy spells with vomiting, red leathery line on forehead. Along with a vascular malformation of artery impingement between 7th and 8th cranial nerves found in 2015 not informed of until February 2024, also an arachnoid cyst in right cerebellomedullary cistern 11mm in 2019, again not informed until February 2024, even was told the cysts of no consequence. Dermatology told me it's unilateral sun damage subcutaneous fat loss because of, Rheumatologist tells me it's aging and need Mental Health to help me with changes, mind you my hair is Beautiful silver 47yrs old and love my looks. I've been told its TAC, SUNCT, and facial migraines. My most favorite is Rheumatologist bs, you see my largest disability rating is 70% Mental Health, we have a pay scale our damages get paid by. Intuition tells me PRS, I was researching trigeminal neuralgia in ways to help relieve pain, I took an eye break, closed my eyes while they were closed a picture of surgeon general warning label of Marlboro cigarette pack reading "May cause Parry-romberg syndrome ". I opened my eyes, thought, what? What is that? So before typing in my search bar PRS, I searched my symptoms, and there in my search Parry-romberg and I began reading and finding that I have very similar symptoms and features of this condition. Im still voting on some wicked weird wango card for a simple vitamin deficit, but I fear it is PRS and the VA in Cleveland Ohio is not listening or helping me and I can't afford $450 for a Rheumatology appointment outside the VA. Anyone know another way? Have any insight on what this might be ? I feel like the VA is using my disability rating against me in which is abuse and I can tell the difference between depression/anxiety and actual illness and pain. My daughter has even called my VA provider stating what she herself sees happening to my face and the pain takes me down for days, and I suffer from fibromyalgia. I don't know what else to do the VA refuses to outsource me for this issue.
Thank you in advance for any responses
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@ackannard I'm sorry to hear you are dealing with this, and getting nowhere with your docs.
Sometimes when caught in the limitations of VA care, it is helpful to contact your state office of Veterans Affairs Here is how you find them in each state:
https://www.vanderbilthealth.com/program/vanderbilt-lung-institute
They have seen and heard it all, and can often help get the referral you need or locate resources for care not available from the VA.