chiari malformation

[jmep]

i was just diagnosed with chiari malformation after i passed out the other day.  since my er visit my symptoms have come on stronger and have devloped 4 new ones.  the one im most concerned about is that i noticed one of my pupils is bigger than the other. i cant get into a neuroligist for another 9 days was wondering if anyone knew if this is a symptom i should get emergency medical attention for??

[linnielou232]

My heart goes out to you.  I think I can speak for most of us.  When hearing the word Chairi for the 1st time and looking it up, it is a SCARY word, but as I welcome you into this forum, please don't be afraid, we are here for you and your not alone in this journey.  We have been through your steps some are on different ones, but we are all here to walk you through this and hopefully lessen your fear's.  I also suggest getting an NS specialist, and as Rylanesmom said Selma is the who lead's most of us in the right direction for answer's.  On my journey it was this forum which helped me push to take another step to find the right Dr. and in what direction you should go.  We have all chosen different Dr's, we all have different symptom, different surgeries, etc, but we all have Chairi and we understand the confusion, how scared you are. Reading on it you will find that having Chairi is a life altering issue, with or without surgery.   I pray for the best for you, but do know your not alone in this.  Wishing you a helpful journey with this forum.  Welcome Chairian friend.
Linda :)

[Rylanesmom]

Nevermind I see that is what you want to know and you will need full spine MRI for that high a chiari specialist would do.  We all found this site scred and looking for answers.  This site is such a blessing because you have friends that get it:)

[Rylanesmom]

Do you have syrinx?
I did not yet but had csf blockage.

[jmep]

thank you so much!! its so nice to know there r people out there to help!! my biggest concern right now is the fact i havent had an mri and reading about syrnix and all that stuff is scary cuz i have no clue.. just feel like i need some answers ugghh only been a few days and am totally stressed already. think the mri will give me some piece of mind at least

[Rylanesmom]

Geez typos if you don't  get anything I wrote let me know

[Rylanesmom]

Often the Dr telling ou only knows what they are reading.  That was my case too.  You have chiari and it says the only treatment is surgery and I made you an appt with this NS.  It is just not something most Drs come across.  I will say I am blessed hat I ke my iPad to my pcp and say look at this and she is always willing to try.  I m one of the lucky ones that have a few of the connected issues.

[Rylanesmom]

My PCP called in my MRI orders as I discovered what I needed prior to flying to see NS unfortunately you have started a marathon not a sprint.  There will be lots of trying to treat symptoms and testing.  If something scares you it is always better safe than sorry.  (if I passed out I wold get checked). I know I had chest pains that sent me to ER a couple times and my heart is fine yet it might not of been.  Many prayers headed your way.

[jmep]

yes i have been doing alot of research i honestly had no idea what the dr was talkin bout when he told me i had it. i was very shocked when i googled it. its like a bad dream!!

[jmep]

i also lost my job less than a year ago and due to that have no health insurance. my unemployment benefits are to much to get medicaid any ideas on what i should do is there any help for people in my situation?

[Rylanesmom]

I will tell you that when they finally discovered my chiari they referred me to a local NS and I started tidying and chose mine.  I am 25 days pst op and so handful or the level of testing/care I received.  Many of us write about our symptoms and experience in our about me and journals.  

[Rylanesmom]

http://www.medhelp.org/health_pages/Neurological-Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

They always post a disclaimer that someone here has posted that one of Hesse Drs is a chiari specialist that treated them.  Do your research this is not recommended as a referral.

That being said Dr Oro is my NS:) I would recommend him.

[jmep]

hi and thank your for your response i have not yet been to a neuroligist nor had an mri. i passed out a few days ago and went to the er where they did a ct scan and found chiari malformation and told me to follow up w neuroligst but my apt isnt for nine more days. since my er visit my symptoms have come on rapidly such as my eyes playin all kinds of tricks on me tingling in my fingers horriable headache behind my eyes and back of my head shoulder pain extremly exhausted direaha and the one most strange one pupil bigger than the other idk if i should go to er or not tried to call the neuroligist they reffered me to and he said he couldnt tell me anything cuz he has not yet seen me. im very scared and dont know what to do. was thinking maybe if i went to er the mri process would get started faster who knows just dont know what to do!!!!!!!!!!!

[katie162]

wheres the list on here for chairi specialists to look for in our area?

[Rylanesmom]

jmep I would call them and tell symptoms.  One thing I noticed is your appointment is with NL and not NS.  You will also need a NS that is a chiari specialist.  (not all chiari patients are surgical candidates but you do need a specialist). Many of us travel for a specialist.   You can find a list on here.  What mm is your chiari?  Have you had full spine scan looking for srynx?  CINE flow study will also be needed to see if you have csf flow blockage.   Selma is our resident expert and she will know more:) Welco e to our group sorry you are here.

[Rahe28]

Welcome to the Chiari Malformation Forum, but sorry for the reasons you are here. That is actually pretty wuick to get into a NL. Do you mind me asking what your other symtoms are ?