"I've been experiencing almost constant light-headedness (almost a "fuzzy" feeling in my brain), headaches, visual disturbances (hard to focus either on something direct or in peripheal vision), rapid heartbeat, muscle weakness and sometimes slight shaking. According to the neurologist, my MRI shows 4-5mm Chiari I malformation, but she doesn't think that is what is causing my problem"
That was one of my previous posts. Over a year later, I'm still having the same problems. I will be in Nursing School next fall, so I desperately need to figure out what's going on! I've been wondering how often an MRI shows Chiari since this condition is supposed to be so rare. After reviewing the treatment for Chiari, I've tried to pin my symtoms (symptoms) on anything other than this, but I do have and appointment with a Neurologist @ Emory in July and I'm hoping to get some definitive answers. Just last week I had several lab tests done including one for Lyme Disease, but everything is absolutely normal. Living with this on a daily basis is terrible enough ( I have difficulty working and driving, and I can't drive out of town).
Any comments or suggestions would be greatly appreciated!
I would first suggest u see a chiari specialist and get checked for chiari related conditions such as syringomyelia, tethered cord, pusedotumor cerebri......and EDS.
It is possible that one of the other conditions is causing most of ur issues or in conjunction with the chiari.
A typical NS or even one that is highly regarded for his work on the spine, is not going to be as helpful to u as one that devotes all his time to chiari and chiari related conditions.
I was also tested for lymes...lupus...MS ect to rule those out bcuz of symptoms...ur dr is being thourgh.....but a MRI of ur thoracic, and lumbar spine will also tell alot more too.
Please read thru the welcome message if not already and use the links to the Health Pages for more info.....that and reading thru the threads here can only help u find more questions to ask ur dr....one should also be how many chiari patients does he treat.
I am glad to welcome u and I hope u continue to share ur chiari experiences with us as wellas ask more questions and concerns.
Who at Emory are you seeing in July? I am seeing Dr. Barrow for my Chiari on June 10th and based on my MRI report they also said that I have an arachnoid cyst, but I didn't see that the report said that. I am in no way a neurologist or a neurosurgeon, obviously. Just wondering who you will be seeing at Emory. Apparently no one else in Atlanta has Chiari LOL.
Actually Chiari isn't as rare as one might think. Low level Chiari, or Chiari "0" is found in around 1 in 3000 MRI's. I mean, that's still rare, but there are much rarer conditions. However, Chiari 1 (5mm or larger) is very rare. I don't know the statistics right off, but it's exceedingly rare.
The only celebrity I know of that has had the surgery is Johnny Cash's daughter, Roseanne. I heard that Sean Astin (one of the Hobbits in Lord of the Rings) has it, but I can't document that.
We do have a list of chiari specialists that members here have been to and liked...u must research and find the dr right for u, but it is a good starting point.Many of us do have to travel to get to a true chiari dr.
How far can u go?...and it also depends on the type insurance u have.
Please see our list ....not sure if ne in Alabama, but u may find someone close enuff to check into.
BTW- since this is a public forum u can not post personal info like an e-mail address....
We r glad to have u as a member of our chiari family here, sorry u had to seek us out tho.
Hi and welcome! I live in MS and have not found one in MS or AL but that doesnt mean there isn't one just that i haven't found them. For me, i have decided to go to a TRUE chiari specialist and that means travelin a great distance but thats ok. Can i ask who diagnosed you and how big your herniation is? I hope you find some answers here we are like a family here we support each other when no one else understands. And btw here there are no silly questions just ask! --Shannon
I am 21 and i was diagnosed when i was 18 i had to have imediate surgery due to the condition i was in. I have chiari type 3 one of the worst of them. After the surgery i could no longer walk or even talk much. Air bubbles were left in My brain stem due to the fact i died on the table. The risk is always there just please think before anything is done because it could change your life
Why are you running out of time?? Is it because of a Chiari?? If it is emergent then maybe you should seek medical treatment now from your nearest ER!! There is a list of Chiari doctors here on this forum that you should review, but I'm not sure if any of the docs are close to you. Sounds like you are in a bad situation but I don't think CM-I is a life or death situation even tho it may feel like one. Sometimes we have to travel to get to a Chiari specialist or have to get more than 1 opinion. Keep us posted on your Chiari journey!! Everyone on this forum is so supportive & will respond better if you post your question separately (this thread is from 2009).
Can you expand on what you mean "running out of time"?
We do not have a list of Drs in NV.....but there are 2 in CO which is as close as I could find to your state.....many of us travel out of state to find the right Dr and having the right Dr is key !!!
I am not familiar with the first Dr on the list but the 2nd is one of the countries top for Chiari.
University of Colorado
Poudre Valley Health System
Fort Collins, CO
Dr. John Oro
Chiari Care Center
Let us know how else we can be of help.....and know this- do not accept surgery from a Dr just bcuz it is offered....surgery can cause symptoms to get worse if the Dr is not well experienced with Chiari and ALL related conditions....many of the related conditions can affect how you feel and heal post op should you find you are a surgical candidate.
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