Showed on 1st but not 2nd MRI?

[EraofChanago]

Back in 1999 I had an MRI that showed a type II Chiari Malformation. I've always had mild symptoms but over the last few years, it's gotten worse. Headaches, dizziness, muscle weakness, immune issues. So my current doctor ordered another cervical spine MRI and apparently the Chiari malformation isnt showing.

Is there a chance that it's disapeared? Or was the first MRI wrong? Or was this MRI wrong? Should I insist on another test of some sort?

[selmaS]

  I always got dizzy as well...and had issues as a mouth breather....so at age 7 had my tonsils and adenoids removed....that did not help....MRI's were not in use then so it took until I was 48 to get a dx, so I know how waiting can be difficult...

  I would suggest u get tested for sleep apnea, and ehlers-danlos as both are Chiari related and with the issues u mentioned both could be playing a role,. even if this Dr is only looking at the herniation to say it is gone when mayb the herniation was longer after the accident bcuz of the force of the trauma, so it may have retracted to a size that the Dr may not consider chiari, even tho we all know the herniation is not chiari the malformation is....and regardless it is the CSF obstruction and overcrowding that is more important then how long the tonsils r.....

I know how u feel, but if this Dr is not a chiari specialist he may not know what he is looking at, get copies of the MRI if u do not have them already and use them to get another opinion...in the meantime take a look at what EDS is and see if nething matches up with u see where u fit on the Beighton Scale and if u score a 2 ask for a referral to a rheumatoid Dr that knows EDS, if u do not need a referral check out the Drs in ur area that may specialize in this condition....one step at a time.

BTW- I had one Dr tell me I did not have Chiari after one told me I did, then one said I did, but it was above him and he could not help me....so,do not let  an opinion over rule what u know is going on with u....keep pushing until u get answers even if it isn't Chiari...

[EraofChanago]

Hi, thank you for responding! I was in a MVA prior to the first MRI, they were looking for a concussion and the neurologist found the Chiari Malformation. I was 16 years old at the time, I'm now 29 years old.

All we have from the 1999 MRI is a report which says that this appears to be a Type II Arnold Chiari Malformation because the "structures of posterior fossa crowd through the foramen magnum and down to a level of the uppper third of C2. The fourth ventricle appears to be enlarged, the third and lateral ventricles appear to be normal sized." My mom is going to try to see if the old neurologist still has my file.

My current doctor thinks my symptoms may point to an immune disorder but in addition to all of my symptoms that point to that (nauseas, muscle weakness, joint pain, food allergies, constant fatigue), I also have some symptoms that seem to point to something else such as headaches 3-4 times a month, often in the base of my skull. I can’t lean backwards, I remember being 8 or 9 years old and my ballet teacher yelling at me because I wouldn’t do the move that required me to lean backwards. I get dizzy a lot, especially when I’m being physically active, but that was always explained away as not drinking enough water. I breathe really shallowly and stop breathing when I’m concentrating; I had a doctor tell me when I was little that I was “a bad breather”.

So I'm trying to wade through all these symptoms that I have had most of my life that I always considered "normal". It's only come to my attention in the last two years or so that most people don't feel sick 80% of the time. And I also have this old diagnosis that I've ignored for almost half my life...So I am all sorts of confused.  Plus now in the last year or so, my symptoms have gotten worse. My symptoms (although the same ones for the most part) are worse today than they were six months ago, worse six months ago than two years ago.

Now I have this MRI that doesn't seem to show the Chiari malformation to add to the confusion...But it was just a cervical MRI and no contrast because the MRI place's machine went down and they had to reschedule me to a Saturday when there wasn't any one there that could do the contrast. And no, this is not a specialist or even a neurologist. It's my primary care physician and whoever the radiologist from the place that did the MRI.

Should I push for another test? And definitely a neurologist referral right? I just feel weird pushing for more tests when this MRI just came back with nothing...

[selmaS]

  Hi and welcome to the Chiari forum.

There r several things that could be going on...first, were u in a MVA or had a fall prior to ur first MRI? And do u have copies of that MRI?

Type II Chiari is usually found in newborns....and not a common thing for those of us that are older....

Next if u have Chiari it can not go away....but, if u had low lying tonsils as a resort of a blunt force trauma that herniation could retract if there is no chiari present....to explain, Chiari is not the herniation, but the malformation of the skull and many Drs look at the length of herniation to determine if it is Chiari....so, what they were calling Chiari may have been low lying tonsils and they may have retracted.

As to y u may still have some symptoms, u may still have some CSF obstruction even tho the tonsils r not herniated at the criteria of 5mm or longer to fit for that Dr....do u have the recent MRI copies and report?

There r related issues u could have that many Drs also do not look at, such as over crowding also known as a retroflexed odontoid, cerviocranial instability...ICP, POTS....

And if it was an accident u were in, u should check to see if u have ne other things like a syrinx, and make sure the MRI's r of the brain w/wo contrast, cervical spine, thoracic and lumbar spine, then the CINE MRI to check for CSF flow....

  Did they do a brain MRI?

Lastly is this a chiari specialist?