Help-What would you ask the Dr.?

[MomTerrified]

My son and I are going to see the Neurologist for the first time soon. He was diagnosed with Chiari little less than a month ago. Dec. 10th to be exact. No one has told us anything about it other than the name of it.Actually that isn't true, they didn't even tell me the name of it had to look it up for myself. Have no idea as to the extent of it or anything at this time.  All I know about it is what I have read on here.  I found this site and have been reading up about it. I don't even know where to start or what questions I should ask the Dr. when we finally do see him. Being that none of the Dr.s  in my hometown deal with this we have to fly to Toronto Sick Kids to see him. Since we only have a short time with this Dr. I need to get as much information from him as possible. I would like to go there with a list of questions to ask him but have no idea where to start. So I figured who better to ask then those who have been through this and have lived or are living with this. So I am asking for all of your help. What questions should I ask the Dr.?
At the moment the only things going through my mind are : 1.) How bad is it? 2.) Does he need surgery? 3.) What if he doesn't have surgery? 4.) What happens if he does have surgery, after effects? 5.) Is there or when is the right time to have a surgery, 6) Can there or is there any mental or physical problems if he has the surgery, or if he doesn't have it?   That is all I can think of right now. I am scared to make the wrong decision.
What are some of your experiences, both good and bad? Is there something you wish you did or didn't do? What are the effects for your Chiari on your health and life both before and after surgery? What would you ask the Dr.?
I would like to see him with a list of written questions that he can answer, but as I said I just don't know what to ask. I would REALLY appreciate any and all replies. I don't care how short or how long, you can write me a 10 page essay, I wont mind. Just desperate for any guidance in all of this. I have nobody else to turn to for help or advice. Am a single Mom and his father walked out of his life when he was 8. Haven't spoken to or heard from him since so all decisions come down to me.  I don't want to go into this not knowing anything and regretting my decisions later. I just feel so lost, confused and scared right now. I think mainly because no one here in my hometown can give me any answers. Oh, also what other tests would you recommend or should we expect? All he has had at the moment is an EEG, Head MRI and next week will be having Spinal MRI. Will there be other tests that they will be performing on him in Toronto?  What type of questions might the Dr. ask me? Should I bring anything else other than the MRI and EEG results with me to meet with him? Such as past therapy reports, ie. physical, occupational, speech? What about his psychological, academic assessments? Past report cards? I want to be completely prepared for this and not waste a moment of time with him. Is this all overkill do you think? Like I said we have to fly quite a distance to see this Dr. and I would be so upset with myself  if I didn't go prepared.  I received a letter 2 days before Christmas saying we had an appointment for the 26th of Jan and that was it. Nothing else. I don't even know how many days we are expected to be there. So as you can see, everything is up in the air and confusing right now so any and I mean any help would be so greatly appreciated.  At the moment all I actually really know about it is that his cerebral tonsils are located down in his neck. He was born with it, some of the effects from  it (legs) but that is about all I know. I see some words or conditions mentioned on here and have no idea what they are referring to. Completely lost, confused and uneducated about all of this.
Also,thanks everyone, you have all be so kind and helpful all ready and I am so thankful I found this site.
TJ

[selmaS]

Hi and welcome to the Chiari forum.

The members here have compiled our own list of questions to ask the NS...http://www.medhelp.org/health_pages/Neurological%20Disorders/Questions-for-a-Chiari-NS/show/1155?cid=186

The Health Pages here has most of the info u may seek newhere else on the web...we do try to have as much info here so u do not have to go to other sites.....so if there is nething we lack , let us know : )

"selma"

[Givenstrength]

Good morning and welcome to this site! I'm really sorry for the reasons you had to search us out. It's really hard for most of us living with chiari so when a child is involved it breaks my heart! So first off I want to start by saying you and your son is in my prayers!

These people on here can be very helpful but I also want to direct you to a website conquerchiari.com it may be .org but I found LOTS of info with my research there! Also a list of questions.

Mine and most people on here's best advice I know is gonna be ... Make sure you are going to see a chiari specialist! Especially if you are going to have to fly! So do just as much research on drs as you do on the chiari!

I'm sorry that's all I have right now bc I gotta get the kids on the school bus! Again my thoughts and prayers are with you and your child! ;)