Recently diagnosed with Arnold Chiari

[SamanthaET]

Im 22 and My neurologist just informed me that I have chiari. I know nothing about it. My follow up with my doc is Tuesday. I am just curious about what it entails. Every so often I get into "funks" where I have no energy, stiff neck, and numbing. I have noticed that I have trouble with my speech at times and didn't know if that was in any way linked to chiari. Just looking for any info.

[selmaS]

  Use this link to the Health Pages - http://www.medhelp.org/health_pages/list?cid=186

Do  u use a smart phone or a regular computer, u will see more features of the site with a reg comp....the link to the Health pages is on the right side of the screen......

The problem with soooooooooo many Drs they classify Chiari as mild by the length of the herniation and not how it is affecting u....this is y u need a true Chiari specialist....

Wait till u see the one, "you know u have the wrong Dr when....lol...it is a good one too : )

  Glad to have u here, just sorry why u had to seek us out.

[SamanthaET]

Thank you Selma! I'm not very Internet savvy, how do I find the list of doctors on this forum? Over the phone he just told me that I have Arnold chiari and arthritis of the spine and he may have used the word ectopia. He was saying it is mild and was using phrases like, "you have a touch of this" and, "it's a minor condition". I don't feel like its the absolute end of the world but I definitely wouldn't say it's completely 'minor'. He was somewhat nice and asked me to come back and he would sit with me and go over questions and further testing. I have to say, I'm relieved that i have been diagnosed. I have been feeling like im just crazy and lazy. So it's nice to know that there is a reason for my symptoms. For a long time I have not shared how I feel with my loved ones because I don't want to seem like a whiner or a hypochondriac. I have always pushed through any pain or fatigue. I have started a journal of questions for my doctor and what I am experiencing on a daily basis. I try to have a good sense of humor about things and I absolutely loved the thread about "you know you have chiari when..." While joking around helps me, my husband is not much of a comedian. He's worried about me and very sweet. Last year he had cancer (now in remission, thank God) and now I'm going through this. I'm just grateful for him and having a place like this to learn about others.

[selmaS]

  Hi and welcome to the Chiari forum.

As AshtonL mentioned there r many with Chiari and it is not rare like some info on the internet says or even some Drs believe...Drs that r well informed and experienced with Chiari is what is rare.

What u need to find  out next is how ur Chiari is affecting u and ur overall health....Do u have a CSF obstruction, overcrowding, ne other related conditions and issues?

How the Chiari is affecting u symptom wise is important too....if it is manageable with meds, then they may wait to  see how u do....as surgery is not a cure or a fix, it is a means to restore CSF flow, and slow progression.

Testing is going to seem endless but it is necessary to see if u have the obstruction, a syrinx, disk issues, and the related conditions like tethered cord, ICP, POTS, Ehlers-Danlos, and even thyroid and vitamin levels need to be checked.

Chiari symptoms do cycle so that would explain y u only get the "funk" every so often....keep track of when u do and what u may have been doing b4 u felt that way....some activities can trigger a flare of symptoms...and if we push thru them and over do it, it can last longer......

By keeping a journal u will also notice new symptoms and have something for ur Drs to work from.

Finding the right Dr is key....we do have a list of Drs for u to use to research Drs....the list is not a referral, nor does it mean all on the list r true specialists....just means a member here went to that Dr and liked them.

Keep posting ur questions and we will do our best to help : )

[SamanthaET]

Thank you. Even though I experience aches, quite a bit of pain, and headaches, the main thing I have an issue with his the fatigue. Sometimes when I want so badly to be productive and energetic, I find myself feeling crappy and pushing myself to get motivated. I'm glad this forum is here to connect with people. Thanks for sharing.

[AshtonL]

I'm 17 and was also just diagnosed with Chiari. All of your symptoms are normal for Chiari and I have experienced them also. Hang in there. You aren't alone. For a while after I was diagnosed I thought that I was the only person experiencing the symptoms of Chiari but after joining this site I learned that there are many more people out there with Chiari. Read as much as you can on this site. It was very helpful for me.