Symptoms without obstruction of the normal flow of CSF?

[edee92388]

I have just recently been diagnosed with a Chairi Malformation typr 1 with no obstruction of the normal flow of CSF. As I read the threads on the website, I notice that there seems to be a lot of similarities in the symptoms I have. Ever since I have had my daughter 5 years ago, my fatigue has become more intense. I can barely get through a day without falling asleep. Also, I have had depression and severe neck pain since my early teen years. I had an injury that resulted in an MRI that found the malformation, but before it happened I was laying in bed wondering how I could get a MRI done to see if anything was wrong.... I saw a neurologist and she gave me the impression that because there was no obstruction of the normal flow of CSF then those symptoms were probably not due to the Chiari malformation... I was wondering if anyone else with a Chiari malformation like mine has similar issues.

[selmaS]

  Hi and welcome to the Chiari forum.

The member u r addressing has not posted since Jan....and may not be reading these threads so, u may want to send a PM (private message) that will generate an e-mail letting them know someone is trying to make contact.

U may want to post a new thread also, so the active members will take notice and with more details be able to offer insights.

There are many here that have had surgery as well as waiting on surgery.

[GallyLi]

Hi Edee, may I know how you are going on with the pain? Did you get more information about whether it is chiari or not? Did you do any operation?
My boyfriend has the same problem as you, and we really hope to get out of this soon. Your information and suggestions are greatly needed, thank you!
Best of health

[edee92388]

Thanks Lisa... It is a very confusing diagnosis with very vague information. But the more I read on here, the more I feel like many symptoms I grew up with may be related to this and it actually gives me some relief knowing there may be a reason for having them. The neurologist schedueled an appointment with a Neuro surgeon so hopefully I get some more answers.

[desertstorm2009]

Hi Edee...
Please know that it's not at all unusual for Dr's to tell you your symptoms are not from your Chiari. I personally have heard it many times. Back when my daughter had her surgery they didn't even check the flow and many Dr's prior told her the same. Thank God she found the help she needed and you will too. Hang in there, it takes time:-) Lisa

[selmaS]

  A MRI and a CINE MRI are done differently....a MRI takes still pics while a CINE MRI takes moving video of flow in real time while keeping track of ur BP...do u know which u had? If u just had a MRI it is not always the best way to see if u have an obstruction of flow.

And which areas did they do a MRI of...brain, cervial spine , thoracic and lumbar?

It is possible to not have an obstruction no matter how long the herniation is as it is how wide the tonsils are not the length that can cause the obstruction....

And it is very possible that they mis read ur MRI...do get copies and get someone with experience with Chiari to review.

[edee92388]

Hello, I have had an MRI and they ruled out other conditions... But I have been contemplating going to get a second opinion... Especially for my neck pain. I have been having it since I was about 7 and only now is it kind of making sense to me.
But my concern was without any obstruction to the flow is it possible to still contribute chiari malformation to these symptoms? I was told the flow was perfectly fine but my malformation was over 1 cm...

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask was a CINE MRI done to check flow or did they look at a reg MRI to determine this?

Chiari symptoms do cycle and u can have ups and downs with how u feel and  a pregnancy can trigger symptoms into flaring....

Other related conditions can cause many of the same symptoms, syringomyelia, ICP, POTS, tethered cord, sleep apnea, ehlers-danlos.......

U will want to locate a true Chiari specialist...they can help guide u with testing and not only for Chiari but for the related conditions.