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Looking for answers - could in be chiari?

Can Chiari go undiagnosed for years? I"m a 34 year old busy working mom of 3 and have had intermittent symptoms since 2003. I was in a car accident in 1993 and have had back and neck pain ever since.  Since Spring of this year I've been dealing with intermittent numbness and tingling in my arms and legs, extreme fatigue, vision changes, memory problems, cognitive changes - can't find the words, loss of the ability to multi-task, issues processing what i read. Then weird stuff like auditory issues ( super-sensitive to loud noise and sometimes it seems like someone just turned the volume all the way down on me), weight loss, hair loss, and incontinence. I've heard MS, Lyme disease, TIA...but never a clear diagnosis

Figures I'm finally getting my youngest out of diapers and now I'm going to need one... I do not want to offend anyone but if I can't find the humor in all of this I don't know what I'd do. I'd rather laugh than cry.

I've had MRIs and CT scans but I live in an extremely rural area and am wondering if my doctors are actually up to snuff. I had an MRI last week and in the findings it noted " There is hydrocephalus or midline shift. Small focus of signal abnormality at the right periventricular white matter near the posterior horn of the right lateral ventricle.Small ovoid nodular hypointense area at left frontal lobe, possibly artifactural."  Anybody care to translate?

I'm on the east coast now trying to get answers and a clear diagnosis. I've had an EEG, EMG and they are scheduling a lumbar puncture...are there any other tests that might be less invasive then the LP?

Thanks for the info...


3 Responses
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1388357 tn?1280189493
Hi COmom,

Yes, we can go for a very long time without diagnosis!  I'm 46, and was just dx in May of this year.  My NS told me it's uncommon, but not unheard of, at my age to just now be showing signs of more obvious (accelerated/bothersome/lifestyle changing...) symptoms.  I don't think I'm alone on this one here...

And - don't ever apologize for laughing!  It's much better than the alternative ;)

Lisa
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620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the chiari forum.

I see C.Wolf has greeted u and explained some of ur concerns, and I have to say yes indeed chiari can go undx'd for many years, even if u know something is wrong....a MVA, a fall or a sneeze can trigger the symptoms from their slumber or infrequent visits to be a much stronger presence that we can no longer deny them.

Be sure with the LP that the tech doing the draw does so slowly as it can pull a chiari herniation down further...so they do need to be informed that u have it.I am not sure what they r testing other than ur pressure as u mention u have hydrocephalus...excess CSF fluid...which could be the result of the chiari if u have a herniation and overcrowding that is blocking the CSF flow.Bcuz of the hydro they do need to know the CSF pressure and a LP is needed, but b4 I would say ok to a shunt or nething of that nature is the CINE MRI Wolf mentioned...it looks to see where the blockage is....if the chiari is causing it, it is possible that a PFD could help alleviate the CSF build up...but keep in mind, it is also a side effect some experience after PFD surgery...they develop IIH or hydrocephalus and need a shunt....so, without further testing it is diff to say.


The small nodule artifact could be a issue with the machine the MRI was done on and not much of nething...it is hard to say as each radiologist may use diff verbiage to describe their findings.The last time artifact was used on one of mine I was told it was a glitch with in the machine.,....and from the way this is worded, I am sure a chiari dr would redo a MRI of the area and re examine the area.

I also live on the East Coast....I wonder if u r nearby?

I am happy to have u join our little family here, but not happy for the reason that had  u seek us out.

"selma"

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Avatar universal
Most assuredly yes it can and most often does go undiagnosed for many years. No doubt you will find many here on the forum that have went for years this way.  There are also other conditions that can go undiagnosed as well though. One Dr explained it to me this way, he said 'The human mind is a delicate organ and at times it may tell us your problem is in one area when in reality it has small or minute damage in another." I had taken two blows to the head one from an intruder during one of our meetings  and another which knocked me out when I fell. Both he belived had caused damage internally but not to the degree that I couldn't brush it off until Chiari symptoms started increasing.

You mention MRIs. Have there been any c.i.n.e. MRI [pronouced sin~E]? This is a type of MRI where the readings can help the Dr to see if there is any blockage of CSF.  I'm not a trained professional or Dr of any sort but from you have posted your symtoms sound more like what I had before Chiari started going haywire than they do Chiari. Selma no doubt will respond to you when she can. She is much better at helping many of us here with these radiology terms than I.

BTW-I also live in a very rual area. Frankly you may have to leave that comfort to find a 'real' answer. We are still paying for all the time spent trying to find an answer without driving. Both in bills as well as bad memories.

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