New and very worried!

[ErikaZ]

Hi everyone,
My 3 year old son has been dianosed with Chiari Malformation type 1, 12mm below the line.
He has had a spine mri but now have to wait till the 15/9 for a brain mri under ga.
I always knew there was something wrong, but never thought it would be this.
He shuffles when he walks, like he can't feel where he's walking and is unsteady on his feet, Somedays its worse than others and on bad days will crawl.
He rarely complains of pain but at night wakes crying trying to grab his feet.
He also wears glasses for a turned eye.
When I picked up the report and rang my Dr, he said it was nothing to worry about???? And he DIDN'T need a brain mri.
So I had to fight to get a referral for the brain mri, saying that the Head Radiologist said that this was needed.
Am I right to be so worried?
Thanks for reading.

  
  

[ErikaZ]

Thanks Selma,
Trying to stay postive and praying that the brain mri fine.
Have already received a referral for the Neurology Dr at the Childrens Hospital in Western Sydney but have to wait until they have their intake meeting to discuss Mitchell's case.
I just rang the pediatrician said no to the CINE MRI till he sees the results of the brain MRI.
Mitchell had a full spine MRI and Dr said everything else was fine except mild kinking of the medulla?? and not to worry about that.
Dr also said bone scan results were back Mitchell has imflammation in his joints of his feet which might be causing his pain.

Thinking positive! and he is having a good day today so lots of smiles and laughing!

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry u r so distressed over ur little one...and I understand ur worry.

Until more tests r done, and u know more try to stay calm.

Yes a brain MRI is needed as is a CINE MRI...this is to check for a CSF obstruction and overcrowding...u said he had a spine MRI do u know was it a full spine or just the cervical spine? If just the cervical u should also request a thoracic and lumbar spine MRI to ruleout a syrinx and tethered cord.

And while doing tests, make sure he is checked for sleep apnea, ehlers-danlos,and disk issues, and ICP.

  The biggest obstacle u will have is dealing with the drs until u find a true chiari specialist.
We do have a list of Drs that u will need to research the drs as the list is not a referral.

  http://www.medhelp.org/health_pages/Neurological-Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

   "selma"