Sorry to be so slow to add an update. I think that I did find a solution to my problem at Duke, but not a resolution yet. For 11 months, I have had symptoms that take up two pages to list, but the main issues have been brain fog, (difficulty processing busy environments, standing and talking hard) tinnitus, Nausea, sensitivities to lights, sounds, wind. Imbalance, especially when I don’t have reference points, such as wide open spaces., or when I am moving, or things are moving around me. I have a hard time following conversations. Unable to do lot’s of fun stuff I enjoy, like tennis, and playing games, etc. I have also had some weird symptoms, like, fluctuating blood pressure extremes, extreme sensitivity on my hair follicles (I know it sounds weird) Pain in the back of my legs. This all started 11 months ago when my world suddenly tilted to one side, and I thought I was falling off the bed. That began a journey of doctors and tests and 6 months of VRT that made me feel worse every day. My extreme tilt of the world seemed to morph into a chronic imbalance and brain fog.
Dr Gray, at Duke is a Neuro-radiologist. She has written a paper on the issue of csf pressure (low or high) as being a factor in many of the neurologic symptoms of people who have been previously diagnosed with balance disorders, MAV or other things. Dr. Kaylie, a neurotologist at Duke has referred many patients to her, and has seen them be helped by regulating the csf pressure to within a normal range for the person. I went back to Duke and first met with Dr. Kaylie. What a great doctor…honestly seems to care, and he’s a doer! The bigger treat was meeting Dr. Gray. She is smart, friendly and another “doer”. She tested my csf and thought it was low, so added some fluid, which provided relief of my symptoms. I could walk and read the signs at the same time! Unfortunately it was not long lasting, (which she knew it would not be) so I will need a csf blood patch. I might have just had the blood patch while I was there, but Dr. gray noticed something on my old MRI that was cause to hold off until more was learned.
The reason I held off in writing is that my case is complicated by another finding on the MRI which Dr. Gray noticed right away, but had been overlooked by 3 different doctors. I got another MRI while at Duke, and the issue seems to have progressed a bit, and may be part of the issue causing the csf leak. She has some theories about the issues, but I some some blood tests, a new MRI and she has sent this off to another specialist. Since I don’t know yet what it is for sure, I really don;t want to provide the possibilities here.
So I have something new to explore, but at least I know that the low csf is causing my symptoms, so once they are sure what is causing the low csf, we will know what needs to be done. I will be going back to Duke to meet with some other specialists. I am still waiting to hear back before I schedule the trip.
In the end, this is what I found out:
csf pressure issues can present with a variety of symptoms, but my symptoms were classic for the problem (brain fog, imbalance, tinnitus) I imagine that this theory could solve a lot of problems that seem to be neurological in nature. My balance testing had come out abnormal, but there were no definitive findings to positively diagnose a vestibular issue. I had several diagnosises before this; Right otolithic dysfunction. BPPV, probable MAV, vestibular hypofunction…there were others I think.
So I am still in a little bit of unknown territory, but I think if I can get a handle on the root cause of my low csf pressure, and fix that cause, I can feel a relief of the symptoms that are really making it hard to get through each days activities.
I will be heading back to Duke (soon I hope) and I am not too sad about that as N.C. is truly a beautiful place, with very nice people. The southern accents and the southern charm works on me every time!