what to ask the ns

Hi everyone!

I have an app. with a chiari specialist on the 22nd and am trying to get my ducks in a row.  I have all my old xrays for comparison and other Dr. reports...but I want to put together a list of questions so that I am covered.  I'd like to do an a and b list...one if he says surgery and the other if he doesn't.  For those who have been there and done that, it would be great to hear from you!  I want to come away with as much knowledge as possible.  Thanks!

[selmaS]

U may need a list C...in case he gives u another dx....that happened to me...I was not prepared for that.

Be as open minded going in.....I was shocked and forgot to even ask the questions I had prepared.
Take someone with u to keep u on task.

If ur dr suggests decompression is for u...ask how many he has done...what benefits he feels u will get from having it...does he feel it can wait/or should u schedule right away....does he do endoscopic decompressions......what material patches does he use....does everyone in the OR subscribe to the same insurance as the one u have....I did not ask this to the NS, but did when I scheduled, and even then I was told yes and that was not the case.....ask for everyone involved and check with ur insurance on all of them upfront.

If no surgery- u may want to know what he feels would help, and how they will be monitoring ur chiari.

Depending on what other condition u may get dx'd with, u may want to know what kind of dr u will need to see for it.


Good luck
"selma"

[n40066]

thanks selma!  i had a little list going, but so glad you responded as i didn't have a single one of these on either list and had never even considered a c list!  lol!  i can hear my father now..."there you go thinking again"!  lol!

[selmaS]

I thought I was so prepared and then was blind sided.....not sure if u can be completely prepared...but it is worth the try...lol....

Remember to jot things down as he talks or better yet ask if u can record the session....it is so easy to forget something...and I forgot to write things down......have ur support person do that .....

Please post how it goes
"selma"

[n40066]

i will do that, selma.  not sure who i can find to go with me, though.  perhaps my son, but it depends on how he's doing that day...he's not so reliable some days.  i have a feeling i will most likely be on my own.  it's getting much harder to drive these days and all my friends work.  we'll see as the date gets closer.  it's funny...who ever would have thought i'd be this excited to go see a dr.!  it feels more like i'm waiting to go on a date with the man of my dreams!!  LOL!

[selmaS]

Is there a MH member that lives near u?...what Dr r u going to see?......maybe someone here can go along as support....u should have someone with u.

I know what u mean...I was soooooooo excited to go to my NS also.

Do u have a long drive to get to the dr?

"selma"

[n40066]

from my house, i think about 3-3 1/2 hrs.  but i will probably stay the night before at my parents house as it is about 2 hrs. from where i need to be.  i don't know if anyone on here lives in my area, but that's a great idea!  takers, anyone?  :)

[selmaS]

lol...if I was closer I would go with u.....but I have no idea where u r headed either......lol,,,,is the dr is Del too?

"selma"

[n40066]

no, he's in baltimore, md.    what a shame!  we could have had a ball blasting all the drs that DON'T listen!!  LOL!

[selmaS]

lol....well I don't drive  so we wouldn't be sucha good team in that someone should be able to drive with no worries......that is a long drive for u......can one of ur parents go along?

[n40066]

unfortunately not.  dad just had prostate surgery on monday.  my brother took he and my mom away until the first week of oct.  gives him a chance for some much needed r & r.  it'll be ok...i usually drive it alone.  it's just that it is getting so much harder and the pain from driving almost unbearable.  not to mention that the dr. yelled at me last time not only for driving, but for coming alone.  seems he didn't like it when he rapid fired questions at me and i could not answer him quickly enough.  but that was the dr, at nih, not the new one i'm going the see on the 22nd.  maybe this one will be a nice guy!

[n40066]

still looking for more imput on the questions to ask list!!!

[Devin215]

Hello,
Some other things you can ask is if he does not recommend surgery what qualifications have to be met to be considered a candidate and what type of treatments would help to alleviate or make some of your symptoms manageable? some doctors will vary on that....ask him how many surgery's he has done per week/month for Chiari ....Ask him what his success rate is and ask how he handles complications from surgery if any.  Do some background research on the Dr. I found my Dr's name here before I even knew I had my appointment with him. Some websites will give patient survey ratings back to you. If he does recommend surgery ask what type of pain management regimen he uses. I will let you know of anything else I can think of. What I did for my consult too was found a list of all chiari symptoms and highlighted all the symptoms I have experienced and marked down how often I had that...When I gave it to my NS he was surprised and it will help you too cus I got so excited to see him I forgot to tell him some things I was thinking of

[chadry]

I am really interested in this thread myself. My DD went for her new set of MRI'S today and we go back Tuesday morning to discuss them with the doc. I want to have a list myself.
Keep on coming with the replies. They are very helpful.
Good Luck at the doctors. I am so glad you found one to see. I know that you are excited to get some real answers.
Chadry