Before I was diagnosed with a 3 cm AN, my main symptom was a weird experience I had upon standing up. I felt like all my blood rushed to my head. The pressure was unbelievable and I had a loud whooshing in my ears. I felt like I had to lay down, but I didn't actually feel any better laying down, I just knew that I wouldn't fall over.
I couldn't think as clearly as before. Every day I struggled with fatigue and constant pressure-llike pain in my head. Standing up from sitting or laying down was the worst of it.
I consulted with both Univ. of Penn. and Thomas Jefferon University before completing fractionated stereotactic radition at Jeff. No nuerosurgeon thought that anything I have discussed in this post was related to my AN; however, they said that maybe it would get better after treatment.
Almost 6 months after treatment ended, I finally saw a neurologist, at the Jefferson Headache Center. What a difference! Immediately, the doctors suspected increased intracranial pressure (secondary, rather than idiopathic, since I have the tumor still in there). Even though my eyes looked fine and my MRV (for vessels) showed no problems, the neurologists started me on Diamox. It's usually used for glaucoma, but has the effect of reducing pressure in the brain.
It took a while to get to a treating dose, but once I did, I felt like a new person. I could think more clearly and wasn't always so foggy-headed and fatigued. The whooshing in my ears went away and the pressure headaches decreased in intensity and frequency. It's been nothing short of a miracle for me.
I think that if I had seen a neurologist before choosing treatment I might have chosen surgery. It's too late to have a do-over, but I'm so glad that I finally called the neurologist. I hope some others can find similar help.
Jean
