My name is Holly, I am 39 years old, and was diagnosed with a 1.9cm AN on the RT side on 01/17/2017.
I found this site not long after diagnosis and have crept around for some time. Very grateful to have found it and to everyone that contributes each day. Between the personal experiences and valuable information it's amazing! Anyway, back to my silly intro... I was diagnosed with Meinerir's diseases about seven years ago by my primary care physician. Both of us being very conservative about health care we opted to watch my sodium and caffiene intake to control flares. I didn't drive for a few months while taking OTC's. Everything got better and it was completely controllable. I lead a very active healthy lifestyle so anytime I got dizzy I assumed to drank to much coffee. I have always been clumsy, but this got worse, as well as fatigue. In December of last year I got very run down and my right side from face to foot started to tingle and go numb. In January I had my first head MRI which discovered the AN. By February I couldn't walk at all some days. My gait was terribly impaired and I was having trouble swallowing. I coughed all the time after drinking. My PC referred me to ENT and neurosurgery. Both were completely convinced that the tumor couldn't possibly be causing all my symptoms. I have so many it would take me some time to list them all. So from there they both referred me on to other doctors. The neurosurgeon sent me to rheumatologist thinking I had Lupus. The ENT ran several tests on my heart and ordered a swallow study. The rheumatologist ran tons of blood work, took x-rays, and ruled out Lupus as well as several other conditions. The swallow study revealed I had aspiration when swallowing fluids. This lead many to think, with everything already going on that maybe it was MS. She also referred me to Neurology. At this point I have seen over a dozen doctors including three neurologists. I have had more scans and tests then I even thought possible and everything comes back fine with exception of the AN. Last week I had a second head MRI and learned that it is now 3.9 cm. The radiologist/oncologist went through my scans and explained that the tumor may have very well been the cause all along. So now that I have had three doctors tell me this in the last two weeks, and it is getting much larger faster, it's time to do something. I meet with Dr Amin and Dr Bauer in a couple of days to discuss options. The AN is pushing on the cerebellum, pons and brainstem. The radiologist recommends debulking to allow for room to radiate the residual. He is not a surgeon, but given the close proximity to certain areas it seems safer then risking the facial nerve trying for total removal, or other critical structures. Just wanted to say Hello to all and say Thank you for being here!! Much Love and prayers to all!
