Diagnosed w/Chiari I today

[nmj1973]

Hello,
My name is Nicole and I had an MRI on Friday and I received the results that I have a Chiari I (9mm) today. I went to my PCP last month with symptoms of headaches, memory loss, vision problems and confusion. She ordered a CT, found abnormalities and sent me to a Neurologist. I had an MRI/MRA last Friday and got the results today. Thank you so much for all of the information and support you provide for this community. I am SO relieved to find so many people that can relate and sympathize with all I am going through who are willing to reach out to others. Knowing that I am not alone is so reassuring (although I am so sorry that all of you are faced with this as well.)
I have a follow-up with the Neurologist on Monday, and his nurse said today that we will discuss options and possible referral to a Neurosurgeon. Any info on a NS in the Kansas City/Saint Louis/Springfield Missouri area (even possibly Chicago) would be appreciated
Thanks again,
Nicole

[*Stormy*]

Nicole...don't you hate it when you are trying to tell them to do something and you can't get the words out like you want to..so it takes you a few tries..and by then they are gone along with any chance of listening to what you are saying!!! It drives me nuts!!

So now I make them come and stand in front of me and I say "I have something to say and you are going to stand there until I get it out!!" lol...They are pretty used to that now!

We are glad to have you part of our little community too :)

Carolyn

[selmaS]

Nicole...knowing we r not alone or crazy is one of the best perks of this group....the next is their willingness to share their experiences and info !!

We all have that lovely loss of words and thoughts moments....I say things I had/have no idea what I am saying.....once I asked my DH ...what did I just say?...lol....if nethihng having chiari is deff an adventure : )

"selma"

[nmj1973]

Thank you for welcoming me, I have been reading posts and I am so encouraged by all of the support that this group provides. I keep finding others who have symptoms that I have and I think "aha! I'm not crazy, there is a reason for this!" One of the symptoms that has really affected me is the inability to find the right words or I will completely forget what I was talking about mid-sentence. This has been so frustrating to me! I used to be like a walking thesaurus, and now I'm half-tempted to start carrying one with me! I have younger kids and sometimes they just look at me with a confused look on their face and say "huh?" when I'm telling them things. I am trying to be more aware of this and have explained to them so that they understand and we all won't end up so frustrated.
Thank you for letting me share with you, and I look forward to reading your posts and becoming part of this community.
Nicole

[shanmomof3]

Hi and welcome to the forum! I dont have anything to add either, just wanted to say hi. Blessings ~ Shannon

[*Stormy*]

Welcome to the forum!

I am so glad that the info you have found here is useful to you. This is such a great place for support and just to not feel alone with this condition:)

Selma gave you sound advice so I don't have much to add other than.. really push for the NS appt...that is where you will get the most accurate information!!

Take care and good luck to you!
Carolyn

[selmaS]

U r welcome Nicole.....glad I was able to give u info u could use.

Know that all of us r here, feel free to ask questions or just vent when u need to : )

"selma"

[nmj1973]

Thank you for the warm welcome and the information, I feel better being able to go to the NS as informed as possible, and the information you gave definitely helps!
Nicole

[selmaS]

Hi and welcome to the Chiari forum.

I have added a link to our list of chiari specialists that was compiled by members here...I encourage all to research all drs to find the correct one...and know it is possible u may not find one in ur area and need to travel.

U will want to get a CINE MRI as well to see if u have a CSF blockage and overcrowding...these along with symptoms and quaility of life are what ur NS will use to consider u for surgery.


The NS should also rule out if u have a syrinx, tethered cord, Ehlers-Danlos...and other related chiari conditions.


We r happy to have u join our little family here, so sorry for the reason u had to seek us out.

"selma"

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1121460