Chiari 0/borderline with diagnosis

[CB1122]

Hey how many of you folks have actually been diagnosed with having Chiari even though you have no or very small herniation?

Do you have MRI images on your profile? I am curious to compare my own...

How have you dealt with/ treated your Chiari/ and symptoms?

The Neuro I am seeing doesn't think that my small herniation is my problem... but I am still curious

Thanks for responding!

[rod44]

I have had all kinds of testing done with abnormal results including MRI witch showed borderline CM, a Syrinx and other issues, my NS accepts my symptoms as he has witnessed most of them yet he still will not accept they are due to any of the problems identified on my MRI scans. He now wants to do some more scans.
Before we find treatment we need to get an accurate diagnoses When dealing with something that is not frequently dealt with by doctors we need to find the best doctor with good experience of successfully diagnosing & treating our condition. We need to be our own advocate so it is important that we understand our illness so that we can ask the right questions when we are in the doctors office and understand the answers we get to these questions.......

Ray  

[CB1122]

I started keeping a daily journal too!! I think it is helping me to see how even my "good" days aren't normal... I think I make myself seem so much better than I really am.

I can have terrible leg weakness... sometimes I haven't even been able to stand - but when the Neuro does the weakness test he thinks I'm nuts... and I explain I'm not having an episode.... but yeah... people just don't get it unless they see me when I'm bad .

[Stephiec79]

LOL Selma! That is a perfect parallel! I love going to the neurologist and they do a neuro exam and my muscles feel great! But, like this weekend, making my homemade chile was way too much for my arms! I've started keeping a daily journal. Everyday I write in it, whether it's a good day or a bad day and track every symptom. Hopefully this will help when I see the new neurologist this month!

[selmaS]

SIze of herniation does not dictate if u need surgery or if u have  chiari...the malformation of the skull does...and if ur herniation is 20mm does not dictate the need of surgery...if it creates overcrowding and a CSF blockage along with severe symptoms will.

"selma"

[selmaS]

Dr K spent quite a bit of time with me and my DH as well..was very thorough in explaining what my dx was and the best course of action.


I know what u mean..it is almost like taking the car to the mechanic for a knocking sound that it never makes while at the garage....but just head home......lol.....

[h_r]

I was told that if the herniation is smaller than 5mm, then it wont be chiari, but i'm sure that it will still cause problems.
but to be honest, i dont think its the size of the herniation that causes the symptoms. i have a 15mm herniation, and, by the looks of it, quite average symptoms. i have a low pain threshold anyway lol. i think that even if your herniation is too small to be classed as chiari, you should push for some other diagnosis, theres more tests thaat they can do, and they should beable to help you,
just be annoying and bombard your NS with letters untill he sees you again, thats what i do :)

[CB1122]

It was so nice to meet with Dr. Kula - he talked to us for 3 HOURS!!

He said that there are 5 different ways a herniation appears... pulling, sucking, pushing.. etc. I can't remember, but yeah he said the EDS and the way it effects our bodies can create the herniation. I have the hyper-mobility EDS... I don't think I have the vascular type, but I have to get checked for it anyways.

He said I don't have tethered cord or a syrinx... I had MRIs done of my whole spine. The most frustrating part is when I met with him I felt almost normal... and then the next day I couldn't walk at all...  I think I am going to have to start video taping myself during episodes so these doctors get how severe they are (even without headaches!)

[selmaS]

I also saw Dr Kula the first time I went to TCI...I was also dx'd with EDS.

I have not heard the EDS causing chiari b4 tho....and I am wondering how that can affect us in that manor.

Did he say which type u were of EDS?...since he said cardio tests.....mayb u have the vascular type...but, until u have further testing it can not be known...I also had cardio testing.

Were u checked for tethered cord and a syrinx.

"selma"

[CB1122]

Hey Selma,

So I went to TCI and met with Dr. Kula - he's a neurologist. He acknowledged that I have at least a 2mm herniation, and he said my CINE MRI showed minor CSF blockage. He said my skull has a somewhat flattened feature of those with Chiari. He also said I have EDS.

He believes it is the EDS is probably the cause of my herniation. B/c of EDS he wants me to get some cardiovascular tests.

At this point because I don't complain of headaches he doesn't think I fit the Chiari dx.  Which is ok with me- I don't really want to have Chiari, but I think after all these tests I'm just going to circle back around to Chiari...

[selmaS]

May I ask who u saw? I am not that far from u and went to Philly the NS there was not able to help.....it is important u find a true chiari specialist.

Consider traveling to a dr that has the experience and know how about chiari.


"selma"

[lilmiss1999]

I also have pictures on mine. Was told that untill it is 5mm it is not Chiari. Mine is measured at 4.7mm. That is .3mm too small. I asked the NL if she realized HOW SMALL .3mm is? Neadless to say it has been a struggle.

[lu7997]

I have pics posted mine is 4 mm and considered borderline.  

[ploink]

I have a picture on my profile that that shows the cerebral tonsils sort of wrapping around the brainstem, more sideways then downward and on one side more than the other.

Radiologist reported only 3mm, but that was measured exactly in the middle between the tonsils. Moving one image in the stack shows more then that. At TCI they did not even measure it, but confirmed herniation was asymmetrical. I think at the lowest point on one side it is at least 5mm.