Preparing for my appointment!

[Autumn55]

I finally have my NL appointment in about 2 weeks!  I'm getting really excited as this feels like great progress!  So I've started preparing myself, to try to minimize disappointment!

So far I've:
-started a list of questions such as the cause of my syrinx, what NS she is sending me to, if they are a chiari specialist, if I will be tested for related conditions(chiari/EDS/teather cord syndrome) and I want to discuss my symptoms and how they have been affecting my life/work.
-started a list of all my symptoms and how they affect my daily life.  Also I had time to rethink the questions she asked me last time, so I am better prepared with answers other than *I'm not sure*
-ask her if there is something I can do for pain, but I don't want anything too crazy since I'm still breastfeeding.
-I tried to get a copy of my MRI's fro 4 years ago from my doctor, so my NL could compare it to my recent one, but they won't let me have it :(

Is there anything else I should be doing??  I really really want to be well prepared to get the most out of this now that I'm finally headed in the right direction.  
Please help me prepare.  I want to be well taken care of and get the proper diagnosis/care for this condition.
Its just so scary!!
I just need your reassurance and advice since I don't have anyone in my life to talk to about all this to give me peace of mind... ahhh...
Thank you all for helping me now and in the past :)

[epsion22]

Hey,

Isnt it exciting? I have my first appointments in the next week and two as well. My first one is with a neurosurgeon, Dr. Frim who is specialist and the next one I have is a neurologist.

I have done my MRI of my spine, brain, and CINE with results that are ready to go. I would say put a list of all ur questions, hypothetical or not and be prepared to ask such questions.

[zygy2]

I agree, you NEED to get that MRI and report so that you know what it said back then!!!  They are your records and you have the right to them, I would push until you get them!  Good luck with everything!

[selmaS]

  Hi...u should be able to go to the facility where the study was done and request a copy of the films....u do not need to get them from the Dr.! The will also give u a copy of the report, just say u r going for a second opinion and need it for comparison.

Here is a list of ?'s for the NS...there may be a few  on here u may want to ask-http://www.medhelp.org/health_pages/Neurological%20Disorders/Questions-for-a-Chiari-NS/show/1155?cid=186

Try and relax...the Dr them self r not scary....u r actually interviewing them....keep that prospective...they work for u, do not let them intimidate u, or make u feel u can not ask a question, if they do, they may not be the best choice for u.


  Good luck : )

   "selma"

[jenshead]

Did they say why you can't have a copy of your old MRI?  What about just the radiologist's report?

[cash242]

Wow you should be so proud of what you have already done--I did not find this sight and just jumped in.  My best advice and everyone here will say chiari specialist! My NS wasn't a specialist he was a great surgeon and feel totally confident in his surgery but after care is have a nice life.  I am really struggling again and just contacted Dr. Oros facility and wow the receptionist knew more than my NL.  Make sure your NL really knows because my new one I loved but realized I may know more than him so he is going to work with Dr Oro.  Your way ahead of most so best of luck and just  make sure you advocate for yourself and how serious this is!