Taking a advice

[barbjo]

Hi all!
I just wanted to thank everyone for the support.  After listening to great advice and getting the strength to deal with what I need to deal with...again, I have an appt with a neuro-team at Duke on Aug. 10th.  Can't say I am too excited that I have to have yet another MRI (last one was in May) on Monday.  Guess I can always look at it as a free nap time  !    May end up watching and waiting again, but hopefully in hands that I am alittle more confident in.
Thanks again!  And all my best to everyone!!!
Barb

[yardtick]

Yes, I too have taken everyone's advice.  I am see a Dr @ Toronto General on Sept 6.  I just saw my GP and he's amazed at how quickly I got the appointment.  He asked me if I had someone on the inside.  Jokingly I said yes, a fellow AN patient (Windsong) who I've been chatting with.  He, like the other neurosugeron warned me about the pit falls of reading too much an the internet.  He feels support group are fine as long as they are supportive.  I told him he should check us out in his spare time.
Thanks again Windsong, Bruce and everyone who responded when I first told my story.
Anne Marie

[Windsong]

Hi Anne Marie,

I'm glad to hear you've now got a date for your appointment.  One of the things about Ans is the waiting that can happen after we find out  we have one.... so now, hopefully,  you can spend the rest of the summer relaxing more and doing things that you enjoy!

.... well that gave me a chuckle... what was your gp's response when you said to check us out in his spare time? lol.... i imagine they don't have a lot of that (spare time, huh?) , so it's good when any doc does check out any sites  for anything now and then..... thinking about gp's and all they encounter in any month, it would be amazing if they all could check out anything at all....

This site is most supportive.... it's one of the beauties here. And I am thankful I found it along with the one up here, Anac. They kept me as serene as i could be i think through my entire pre- treatment- wait, during, and after......... One of my first reactions when I heard about my having an An was " oh, well, I can do something about this as it's a 'thing' that has a variety of possible treatments (depending on size of course) .... and then I was on the net a lot, reading and digesting all sorts of information. It was energizing and gave me a focus. Plus, it made me feel as if I had some control in a situation that might have been overwhelming but for the fact that lots of information was available plus lots of support, and so that was all good.  I know at times, for myself, I might have gone into "overdrive" at times in reading things all over the net, but ulitmately it was a good thing, not only for gaining knowledge of this 'thing' in my head, but also for gaining good friendships that are now approaching two years for me.  It's good to remember to shut it down now and then though and concentrate on other good things in one's life, too......

Loads of good wishes, Anne Marie,
windsong

[pearchica]

Oh Girlfriends and Boyfriends, my Irish temper is up on this one.    GD it anyways... I got so tired of hearing doctors and doctors assistants tell me to "be wary of the internet". Bloody Hell, none of them have a AN, they just cut and or zapp them.  And if I have learned anything about this experience, it is to be your own ADVOCATE!! (sorry windsong for the capitals! how are you by the way?   And it's this website that got me through the experience. Unless if the medical professional has an AN themselves, they just don't get it.

Barbjo- you march right into that appointment and ask them EVERY question you can think of.  I mean they are suppose to take care of us.  And I'm just too damn sorry if our little foray sinto the internet ties them up another 20 minutes.  ARRHG!  And if they think you are obnoxious, you can tell them that they are lucky that some overhyped yuppie couple from Sacratomato, CA isn't in their face asking really tough questions!

And great advise about shutting it down every so often, that is a good thing to do.

Okay- formally P-off pear chica signing off for the night. And shutting down as required.

Thanks windsong for being there for Anne Marie-glad the AN mafia is well connected in Canada!  Annie

[Windsong]

Barbjo,  How did your appt go on the 10th? whats happening now?

Annie your post above had me laughing out loud... thanks for the big chuckle!...   (i had just dealt with 5 tel calls all for a simple refill for heart medication which runs out tomorrow and the gp gave me a hard time so i was stewing... solved with a fast call to the cardiologist however...comfort in knowing he irritated a few others besides me hahaha so your breezy funny  post  and some other things here got me back on a nice track! I probably have weird eyes.. some days caps all run together on me and other times it's just fine so not to worry lol... how am I? our latest heat wave gave me wonky head and big time tinnitus.....so i'm waiting for it to pass and a cold front move in.. haven't checked how "cold" it's supposed to get lol...

Hope you're doing ok Barbjo!.. windsong

[hendi51]

Barbjo, my husband had a MRI in May, found the AN at that time. We had another MRI Wednesday, Aug, 1. We go to ENT Aug. 10th. Hope everything goes well for you.

[NF-2er]

Dear Yardtick;

   My Mayo Clinic neurosurgeon says he reads this site and finds it one of the better ones on the web.
   I don't think one can read too much. Ultimately, the Drs guide the way anyhow.
   Many are egotistical enough to not want their patients to ask intelligent questions.
   If they pause to answer, some of their control and all knowingness is diminished.
   They are probably quadruple booked and want a pt. in and out in 15 minutes or less. Less, if they dictate right away ( 2 1/2 minutes here ). And if they take 2 1/2 minutes to review your chart, that's about 10 minutes to see you, if an office consultation.

   NF-2er

[yardtick]

Thanks NF-2er, Annie and Windsong and everyone else who has read my post.

I haven't been on-line for a weeek.  I was in New York City last weekend with my sons.  In Ontario Canada we are lucky to have the 1st Monday of Aug off as a civic holiday.  We had a wonderful time.

Now back to the AN business.  Today I received in the mail a letter with an appointment from a Neurosurgeon @ St Michael's Hospital in Toronto.  My original neourosurgeon referred me because July 10th I asked about FSR & GK.  The Dr was annoyed and asked how I knew about FSR & GK. I told him I was researching the on the internet and that's when I was warned about the pitfalls of the internet.  Meanwhile the Dr got my case mixed up with another patient because his internet was down!!!

Windsong had suggested I see her Dr @ Toronto General.  I e-mailed him and he said he would see me.  I see him on Sept 6th.  I am going to keep the appointment with the Dr @ St Michael's, that's Sept 20th.  The letter states, "Dr ---  has reviewed and prioritized the information and will see the patient on 20 Sept 2007 @ 9:00am."  I want to hear what these two Drs have to say.  I have the CD from the MRIs and the radiologist's reports.  I'm waiting to have another MRI, hopefully I will have it done before Sept 6th.   

Finally, I'm going to get a better understanding of this facial neuroma and I'm praying I do not need the surgery with a nerve graft.  If it wasn't for this place the neurogsurgeon might have given me a labotomy, after all  he did confuse me with another patient!!!! 

Thanks again everyone,
Yard Tick

[barbjo]

Hi all!
hendi51 and Windsong thanks for asking, unfortunately the Dr. was out of town today (10th) and I have been rescheduled for next Friday, 17th.  LOL Just what I wanted...more waiting!
I can't express the thanks to all who voiced opinions on my original post.  Truly got some wonderful direction. 
I do have an odd question for everyone as I face the next go around, does anyone who had surgery experience Autonomic Dysfunction?  Seems I have developed this situation over the past few years, and has gotten to the point that I can faint alot, lightheaded and general yuck.  Apparently, it is described as the brain and the heart not communicating well.   Not tons of information on this, and my husband and I have been searching to see if there is a connection with my neuroma(s).
Thanks and my best to everyone!
Barb