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Confused by MRI- Chiari

Hi everybody, I'm new here. I'm a 29 YO female with a history of connective tissue issues and POTS, with new onset of severe daily headaches that get worse over the day and cause extreme fatigue. I have a history of vague neuro issues, mostly with balance, gait, and swallowing. I recently had an MRI done because of concern of a CSF leak. The MRI came back totally negative according to the radiologist and headache doctor, but I am still getting referred to a neurosurgeon due to the high overlap between connective tissue problems (suspected EDS) and CSF leaks. When I looked at my own scan, it almost looks like I could be dealing with a Chiari Malformation?? I am a bit confused because I don't know exactly where the foramen magnum ends, but my cerebellum seems pushed up against the brainstem and somewhat sagging. I have put a screenshot in a public Google Doc, but could anyone let me know whether I may be on the right track and should bring this up with the neurosurgeon? I do not want to jump to conclusions and sound like a fool. Thank you!! The screenshot is here: https://docs.google.com/document/d/11DRb5SfXBtF8Zw-1Us67Jk83lL4x_otyT6DZc0KxHf8/edit?usp=sharing
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620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari Forum.

I know how frustrating it is, trying to get a DX and treatment for a condition or conditions that are not commonly DX'd. It's not that it isn't there, it is just the medical field on a whole have no idea what it is, or how to handle it so they turn into an Ostrich and claim not seeing anything rather then say I spotted this, but you need a specialist....OR you get a "specialist" of their own assessment and all they want to do is surgery....more for ego then anything else....

As for your scan, it is possibly Chiari...BUT I am not a medial professional in any sense of the word.....the problem I see is you are listening to someone that sees Chiari as the herniation of the cerebral tonsils...but it isn't....Chiari is the malformation of the skull which leaves the cerebral  portion of the skull too small to hold it's contents, and as a result the tonsils are forced down through the foreman magnums and sometimes onto the brain stem, both of which can obstruct CSF flow and cause other issues....

Have you been tested for Ehlers Danlos? You mentioned a connective tissue disorder, but only mentioned POTS....If you do have EDS, it is also possible you could have CCI...cervical cranial instability.

I agree  you need a Chiari specialist to review your MRI's and possibly do a few more....thoracic and lumbar spine MRI's as well as a CINE MRI.
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992677 tn?1537668903
You are quite possible in the right place. Not trying to diagnose yet your case sounds eerily similar to my own. Sometimes I learn more about myself from listening to others with similar issues than from a doctor. Arnold Chiari Malformation was no different really in my case.

My poor wife spent months dealing with numerous weirdo symptoms that doctors around here couldn’t make sense of at all. My diagnosis was a shock and really not good news. Yet by the time the diagnosis comes I believe many chiarians are so stressed by all the non-answers out there that even an answer you wish you never heard can be a blessing. When I think about all the sorry but crap answers supposed specialists gave me… uggg what a waste of time and money.

The first thing they diagnosed me with was POTS though tests didn’t prove it out that diagnosis kept coming back up with different doctors. Until one put me in the psyc ward and told my wife to my face that I was making up all the symptoms. He literally scanned my brain MRI like a deck of cards. The said somewhere someone is going to say you have Arnold Chiari malformations but.. then tossed the MRI films I had brought onto a small shelf in the room and he turned and walked out leaving instructions to have me put in the ward for observation.

The psychiatrist in that ward released me after one conversation and a review of my chart. She told me this is not where I belong and directed me to find someone willing to look at the back of my head. She said she believed that is where we would find an answer. Then offered me a job lol!!! Anyway, once released what did I do?

Firstly tactfully chewed out my then PCP. He was also a personal friend but seemed to agree I was making it all up. Once your told that enough you begin to question if you really feel what you feel. So I hit the search engines only to find the myriads of disinformation and differing opinions on CM out there we decided to look for a forum. At the time we found two this is the one that got me. I began reading comments then discovered the search feature. So I searched and read several posts then signed on. From there Selma actually helped me more than she probably knows. In fact if not for Selma even the posts here probably wouldn’t have swayed me due to the severe dislike for quackerjack doctors by that time. Between the symptoms I was having and all the garbage from doctors around here the trip to the ward and finding this list got me to CCF. My PCP ignored me and sent me to a cervical specialist rather than a Chiari specialist. At the time I still didn’t believe it mattered so kept the appointment. That doctor looked at me neck made a few observations and recommended steroid shots as every one else had. My wife broke down. I mean she totally emotionally had enough. She never speaks up but she asked the NS what problem he has with looking at my brain. She told him what she has to see every day and demanded he look at the brain MRI in his hands. We did not mention CM to him because I partially still believed the quack that said it wasn’t CM. Well this doc looked at the MRI for just a few seconds and the mood between the two doctors in the room changed. He didn’t say anything really just told us he may have found something. Then asked if we could wait so he could try and get ahold of his partners with more experience. Probably 30 mins later he came back with two other doctors. He told me that they where confident I needed to see a NS immediately. Then told us we needed to see a Chiari specialist and here is his office and they had set up an appointment right then and there. So we were shuttled to the building the specialist was in. The rest is history…

Not trying to discourage you in any way. Just saying go into this know it may not be CM. But if it is you won’t find answers IMHO until you find a true Chiari Specialist. ATM IMO CCF in Cleveland does not have a Dr who really knows CM. One doctor claims to be but IMO he is no specialist

Sorry if I rambled got a wonderfully cooperative head today.


CW
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