Nervous for appointment with NS.

[tracycoll]

So I have a scheduled appointment with a NS that specializes in Chiari, but I am nervous. I am afraid that he will tell me that my Chiari is not causing my symptoms and dismiss me. I wrote down a list of my symptoms over the years and how they have progressed. I also have my MRI and CT films. I just want to go in there prepared. I am always worried that doctors don't believe me and that I won't be able to get across to them how bad I truly hurt. Other than having a symtpom list and records is there anything else I can do to be sure to get the most out of my appoinment?

[selmaS]

Do not let the NS's inability to help u slow u down in looking for help, I had several NS's tell me that they were unable to help me, one said it was above him, he had no idea what to do, and the other said I did not have chiari......the issue is most likely a NS that is not well informed on chiari...so keep looking.

"selma"

[tracycoll]

Thanks so much for the support. I guess I'm just nervous about what I will do next if the NS says he won't be able to help me. But I'll just have to take it one step at a time. Thanks again!

[selmaS]

  Hi it is possible to go to a chiari specialist and not be considered a surgical candidate......and not all that consider themselves chiari specialists truly r....so go in with an open mind....do not expect one thing or the other...and if u r not happy with the out come....just find another dr...many of us have had that happen...and it is not what u may want to hear it is  possible.

I pray ur Dr visit is a positive one for u and ur treatment : )

"selma"

[pamk5]

I missed the first sentence when you said he specializes in CM... you will be fine... no worries.  

[pamk5]

I think the thing we forget is that they work for us!  Until you are satisfied you dont have to leave.  Is this NS a Chiari specialist?  If he isnt this may very well happen.  I know I went thru it so many times.  The reason seeing a CM specialist is so important is that we share alot of the same symptoms... for example I was told when I finally got to mine that I am just like about 98% of his other patients.  So they have already put all the confusing pieces of this puzzle together.  If it does happen and he dismisses you ... consult the list here and try to pick out someone who understands this condition.  It may be the only way to get validated.  Plus if you need surgery do you want someone who does this surgery all the time and focuses on it or do you want someone who does it occasionally between a back and a brain tumor?  

If he does validate you... then you want to ask him how many surgeries for CM has he done?  What have been his outcomes?  How many have needed reoperation?  References from his patients who have had surgery.  Most have a list who have agreed to be contacted.  This is a beginning but I think you get the idea here.  It is a job interview for him not you!

I hope this helps.
Pam