My official 1st dr appt.....

[ppearl214]

... 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!

[Raydean]

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

[ppearl214]

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!!!!!!

[barbjo]

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. 

Barb

[JHager]

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

[ppearl214]

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!!!!!!   

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

[luv2teachsped]

Phyl-  Good for you!  please keep everyone informed . luv2teach