ANA Discussion Forum
Archive => Archives => Topic started by: ppearl214 on August 25, 2005, 08:44:44 pm
-
... is tomorrow... Friday, the 26th.
I have my films from May and last week, I have copies of both MRI reports... Raydean, I printed out your questions from the General Discussion threads (thank you soooo very much for that), I've got my train schedule... have taken calls from my family wishing me luck (I've opted to go alone to the appt, fully armed with everything I could gather)....but I know I'm bound to forget something.... I guess nerves are starting to set in (finally!)..... any thoughts on what I should bring, what should I ask, how the heck I approach this?
Still lost and befuddled in Boston (Phyl).
P.S. I've pointed my family and friends to this site and the forums to help with their understanding of all that is going on... we are all very impressed and appreciative for all that you share here and we thank you all! :)
-
We wish you the very best tomorrow. Thanks for the compliment, but the real credit goes to Kate Besserman of the www.anworld.com website. Kate is an amazing lady!!!!
You know once you're in the exam room it's so easy to by pass some of the information that's being given, in fact so much information came be given that it's hard to understand and remember. Sometimes it helps to have a friend or family member with you during the conference. Short of that i'd also recommend taking a small tape recorder and recording the conference. This way you'll have the information available to you at any time. Especially helpful during the middle of the night when our fears are the greatest and the doctor isn't available. One last piece of advice, write down any addition questions that you have and ask your questions starting with the most important ones first. This way if you run out of time, or an emergency comes up you'll have the answers to the important questions.
Again good luck tomorrow. Our positive thoughts and prayers will be with you!
Raydean
-
Thanks Raydean! Mom kinda got on my case for not having my dad with me tomorrow (she lives in Atlanta, Dad is here in Boston), but really wanted to do this on my own... guess it's just how I deal with things... but, I am planning on paper and pen in tow with me so I can write down everything. I do have a little dictaphone, so great suggestion about taping the conversation... my memory doesn't seem to be all that it could be lately.
I have printed out the questions (I still thank you and Kate for them!) and on the train, will go through them to figure priorities questions... the doctor last time took such an interest in my case that I was in the exam room for an hour with her... let's hope she doesn't get pulled out tomorrow....
I think I need a gin and tonic with a lime.... :)
Thank you again for your well wishes... will keep you posted on what happens tomorrow.... nerves have, for sure, set in and I've waited all summer for this appt...
Raydean, I owe you a hug if we ever meet! Thank you!!!!!! :)
-
Let us know what happened at your appt. Sounds like you are very prepared and armed with great information. I think thats great! Hopes and prayers are with you today!
"Still lost and befuddled in Boston (Phyl)."     Sounds like you are getting found and less befuddled!!!
Raydean, you gave alot of positive wonderful tips, appreiciated the web site www.anworld.com.  Everyone here is very supportive and helpful. I have been lost and alot of questions and you all have pointed me in super directions.ÂÂ
Barb
-
Hello!
All the best - my first official neurosurgeon appt. is 9/14. Hopefully, I will come away from that with a clearer picture of where I am and where I'm going.
As for being 'Lost and befuddled', remember: you're in Boston! Translation: Dunkin Donuts and Pizzeria Uno on every corner. (Here in Las Vegas we don't have any Dunkin Donuts. Anywhere. I'm thinking about starting a support group for D.D. addicts, but can't see through my chocolate-frosted-withdrawal tears!)
Plus, Tuscany Bread at Pizzeria Uno should really be it's own food group on the 'Pyramid'.
Hope all goes well!
Josh
-
Hi all... just got home and here's the update:
Dr. Claus was VERY impressed with the info I walked in with today (she certainly can see I did my homework and I thank ALL of you for your insights).
Meeting outcome: We both looked at the films from May and last week... no growth change in AN (still 5mm x 8mm) and Chiari has not gotten worse (still 2-3mm, more towards 3mm). She immediately came out and said she wants to wait and see (based on my age of 44 and seeing that I am still active with work, working out with a personal trainer, traveling to London in 2 weeks, etc.).  Her belief is that the risks involved outweigh the positive for me at this time. Lordy, a surgeon that doesn't wanna cut!!!!!!  :o
She is ordering my first baseline hearing test (I told her I have some "ringing" and "buzzing" in my left ear -- same side as my AN) so we have a foundation to measure... re-MRI  in 6 mos....see her again in 6 mos.  She told me that they do MANY AN's at Brigham & Woman's (Dr. Claus is the protoge of Peter Black, Chief of Neuro at Harvard Med and  B&W Hospital)......and will give me AN patient names they have  worked. She also informed me that she much prefers the Gamma knife vs.Cyber knife and although there really is not much in the way of clinical  trials to compare the 2, Dr. Claus  & Dr. Black are going to be doing a research study on the 2 procedures in the near future....btw, Dr. Black run the Brain Tumor center at B&W.
I'm ok with what she said today...it also buys me more time to research out all options. My primary care physcian will manage the pain and symptom control.  I have an appt with her on Sept 7.
So, you got a Wait and Hold here....
Josh, btw....you want Hazelnut with that Pizza Margherita??? :) Please keep us updated on your appt! Good luck on the 14th.
Hope you all are doing well.... any  thoughts or ideas, I'm open to hearing...a  feel better knowing I saw Dr. Claus today armed with all the info I had and not feeling "as" lost and befuddled but now it's trying to handle the emotions during the "wait & see".
TGIF to you all... and I don't know how to say thank you for all of your advise, suggestions and well wishes.... Cocktail hour has started... anyone interested?:)
Continued well wishes to you all.
Phyl
-
Phyl- Good for you! please keep everyone informed . luv2teach