CHIARI MALFORMATION TYPE 1

[pOPPY1938]

Hi, any help would be much appreciated , I am waiting for an appt with a neurologist, been having numbness and oins and needles mainly at night since april 2013 , pain, and strange sensations in arm, hands ( numbness mainly at night) , neck, face occasional foot tingling, muscle twitches tingling on the back of my head....., after many visits to the doctors managed to get a mri scan of my neck, found to have CM Type 1 ,
15mm herniation, mild crowding  and for it to be checked further , but when I went to the appt the consultant said not to worry about Chiari  and my symptoms not related
Any help / advise would be appreciated !
Should I ask for a full spinal MRI sCAN ?
appreciate any comments

[selmaS]

  U may ask ur Dr to consult with a known Chiari specialist many will suggest these tests be done.....

I am not sure how ur Drs work since the system is very different from here....but there are Drs that are Chiari specialists....u may want to contact one  and see if they would consult with ur Dr on testing suggestions.

[pOPPY1938]

Thank you I will mention this when I see the neurologist as I haven't had
a full spine MRI and I haven't had a flow study either .
How would I persuade them that I need this doing ?

Your help is appreciated Selma

[selmaS]

  Yes a full spine MRI so that u have one of the cervical, thoracic and lumbar spine will help determine if u have disk issues, syringomyelia, tethered cord...

And a flow study or CINE MRI is a biggy we all need,

Plus finding a Dr well informed and experienced with Chiari may be the way to get these tests.

[pOPPY1938]

And obviously a full spine MRI

[pOPPY1938]

Do I have to ask for a flow study
It states on my notes
Skull base referral is required

[pOPPY1938]

Thank you so much
So I think I need more scans as mine wasn't
Enough I had MRI spine cervical but just my neck

[selmaS]

  Hi and welcome to the Chiari forum.

There are many Drs out there that have no idea how Chiari can and does affect us, for this reason u will need to seek out a true Chiari specialist. There is a list  from the Ann Conroy Trust....do see the health pages here and research the Drs....I know it is not easy to go to just ne Dr u want, but it may be helpful to ur Drs if they know whom they can refer u to or whom to consult.

Have u had a CINE MRI? (flow study)....this is important.

And have ur Drs done ne testing for related conditions, one would be a full spine MRI as one condition Syringomyelia can develop in ne area of the spine. Many Drs only look to the cervical spine for a syrinx as it is the weakest area and more prone to develop after an injury to that area.

Educate urself so u will know when u have found the right Dr for u.