Just a quick note... I hope, as brevity is not my strong suit.
First, the ANA web-site and the materials provided there are truly a God send, as is the support from the members of this forum! I can't tell you how much having access to information and others who are as special as me
has meant to both myself and my husband. I <3 ANA website and forums!
So, I am breathing again! And taking it slowly, (because what options do I have?) I must get in line and wait for calls, appointments, etc. I am not freaking out anymore (for the most part). I am still anxious to move forward tho.
I just listened to a webinar on the ANA website by one of the Docs I have an appointment with (May 6) at John's Hopkins. This really brings me great comfort! He recorded it last year, so it gives me a pretty good idea as to what to expect from him (i.e. what his surgical preferences are). Again, what a huge relief. The appointment and any potential surgery are both way too far out for my particular liking, but as I said, what can I do about it anyway. I like someone's signature on these boards - something about, you could stress over it, but it wouldn't do any good... That's probably butchered, but the general principle is there!
Additionally I have an appointment with a specialists at Duke for this coming Thursday. So that's happening this week already, which is comforting and terrifying at the same time. It's possible they will run a couple additional tests (I think she said a balance test and an auditory brainstem response test?) Not sure, but I would think it would be good if they do.
I do have some balance issues, no vertigo, but generally flashes of whoa! Lost my balance there for a second... Of course now that I know there is a reason for all the things Ive been feeling for the last 18 months or so, I sometimes feel like I feel more!! Phantom panic pains, maybe? Nevertheless there is some comfort in knowing there is a reason for these things. I have to laugh at all the medical questionnaires - do you have depression?? Ummm, hello?! Yeah, I've got a brain tumor - that's a little depressing! And for past 18 months have had all kinds of bizarre facial tingling, hearing loss, tinnitus and now balance problems, all of which kind of freak you out, but you try to ignore, which leaves you feeling blue and exhausted all the time anyway! So, yeah, you might say I get a little depressed!! Ok, I'm sorry, was I shouting!
ok, deep breath and moving on!
I think of about 10 new questions a day about all these things, but ironically I can never seem to remember them long enough to get to the computer or tablet to ask them and I don't really want to make 10 posts a day!
I think the last bit of update is that I did finally send my records off to the House clinic for review yesterday. So after a week of hurry up and wait, the ball is slowly rolling again. I can't even believe I have known about this tumor for just over 2 weeks now! I'm sure my head will explode from all the research I've been doing. Thank you again to all of you who responded to my original "freaking out" post and to those of you who reached out personally to reassure me and offer help. It has meant so much!
I will start new posts, I guess, with updates. I'm new to forums, so I'm never really sure how to post. And besides I can hardly keep my eyes off books, NiH publications, research sites/centers, etc. I've got about 6 tabs opened on my computers all the time...