Confused

[nmk816]

I recently had a Cine MRI done and the doc's assistant called saying that there was no CSF flow obstruction seen in the MRI. But now the doc is sending me for a full spinal MRI with flow study. I am frustrated that I have to go for a sixth MRI. And I'm confused how they found nothing, even though I feel so horrible! The headaches are horrible. The back pain is even worse. They say I have a syrinx throughout most of my spine. Is it normal for Chiarians to have horrid headaches and doctors saying there's no flow obstruction? Am I just going crazy?!

[selmaS]

  That is what I mean.. it may be the radiologist was over reacting...??? Not sure...

Well Chiari is when the cerebellum is smaller then it should be this is why the tonsils herniate mayb the radiologist mixed them up?? I had no idea, I did not think it fit u either and I do not know u all that well....but I figured if u had seizures u would have mentioned them.

Sometimes those small foci can be an artifact too...so unless ur Dr makes an issue of it I would not worry about it .....

U may want to get another opinion to compare to what ur Dr is saying....

[nmk816]

My NS has dealt quite a bit with Chiari but he's not a specialist. I tried looking up colpocephaly. It doesn't fit me. The prominence of lateral ventricles, I know about because the neurologist showed it to me on a previous MRI. The colpocephaly from what I understand is related to a small head size and seizures. Neither of which I have. And I looked up the thing about small foci, and it makes no sense either. It seems to have something to do with major infection which I never really dealt with.

[selmaS]

Reading this I understand ur confusion....have u had a Chiari specialist to review this?

Colpocephaly can be present with a person with Chiari but a symptom is seizures...do u get them...it is one, but in looking at the others I am sure this is not u....I think they r trying to make a square peg fit in a round hole.

[nmk816]

Well one thing I noticed is a typo that they keep switching between Chiari 1 and 2 in my reports. It still says that my cerebellar tonsils are 5-6mm lower than they should be.
What I still haven't figured out is this mess. - Demonstrated is colpocephaly with mild prominence of lateral ventricles. Thinning of the posterior body of the corpus callosum, and beaking of the tectum. Nonspecific small foci of high T2 and FLAIR signal intensity are seen involving the white matter, perhaps representing mild age advanced chronic microvascular ischemic changes or sequela of old infectious or inflammatory process. No evidence of restricted diffusion seen.

[selmaS]

  Ok so what does it say.....sometimes we can figure some of it out from the report sometimes not....but it is worth reading it and seeing what is said.

Look at some of the members pics of their MRI....compare urs to see if they r similar.

[nmk816]

Yes. I got a copy of the MRI right away and just got a copy of the report a couple days ago.

[selmaS]

  Do u have a copy f the report and the MRI?

[nmk816]

I have CM, SM, and tethered cord. The doc doesn't seem too concerned about other possible conditions. At first he mentioned ehlers-danlos but then settled on me just being double jointed in many areas of my body. Other than that he's focusing on the syrinx right now and nothing else. MRI report which I don't understand, yet I won't have any explanation until maybe after the full spine MRI with flow study. Whish I at least knew what it meant!

[selmaS]

  Hi,...there are related conditions that can cause many of the same symptoms...ehlers-danlos, ICP, POTS.tethered cord....so it is important to rule them ALL out.

U r most deff NOT crazy!!