cerebellar tonsillar ectopia

[TracyGR]

Okay I need information again! About a month ago one of my 20 y/o sons was diagnosed with a 2cm chiari malformation. The other day his twin brother went to the doctor with some symptoms we hadn't thought about until the first son came up with Chiari. The second son is having headaches, ringing in the ears, back aches, dizziness and nausea. Our ARNP sent him for an MRI because of his twin brothers diagnosis. They called and told him his results were negative and everything was fine. We picked up a copy ourselves and read it. We think there is a problem. Could you please give us your opinion. The MRI said "There is  slight cerebellar tonsillar ectopia approximately 3 mm." When we looked this up and we read it was the same as chiari.

[selmaS]

  When in doubt, check it out....be sure so u can relax....I was also mis dx'd as fibro and later told that EDS can feel just like fibro as u can have all over pain and trigger point pain...more then the 18 needed for fibro dx.

[TracyGR]

Update: When we took my first son to the NS for get his surgery scheduled we took our second sons MRI report and disc. Before we could get all the information out of our mouths he saw our disc and asked for it. He left the room for awhile and when he came back he said he has it also; however, he suggested that his symptoms might be able to be treated with medications since his symptoms were not as severe. He did tell us a neurologist to go to definitely check into this more in depth since he was not his patient.
What is bad .... for many years my kids have talked about headaches and different aches and pains and I just blew them off as everyday aches and pains. Kinda thought they were hypochondriacs and would tell them everyone has these problems, you have to live with it.
The kicker...... my daughter has also had symptoms for years and even had a bout that she was hospitalized for an OD and diagnosed as bi-polar. She stopped taking her meds 6 months after her hospitalization and has been doing well. Could this just as well been caused by Chiari? What are the chances all three of my kids have it? I'm second guessing everything, even my fibro diagnosis.
Losing my mind!

[selmaS]

  They will say it is clear bcuz it does not fit their  criteria for chiari and they r not looking at other possibilities like a retroflexed odontoid, or chiari 0....this is y we all stress u go to a chiari specialist.

Chiari is the malformation of the skull not the herniation of the tonsils that is the result of chiari....or other related issues like ICP, or an injury.

So it  may not be considered chiari, but can cause many of the same symptoms...so I would check into it further.

[Viva001]

Do you have a Chiari specialist?  We've all had NLs, NSs, radiologists, etc. who have mis-Dx'd us.  There could be herniation w/o Chiari malformation, and Chiari malformation w/o herniation.
Best of luck for your twins.

[TracyGR]

Am I correct that this is chiari and why would they say the Mri was clear?

[selmaS]

Hi both ur boys should have a CINE MRI next to see if they have a CSF obstruction and  if they have a syrinx...the size of the herniation is not what should be of concern especially when there r symptoms.

Testing for all related conditions, as a chiarian we r prone to autoimmune and connective tissue disorders so we do have to look at all of them as they can add to the symptoms.