Information Please

[Heather1125]

Hello, The other day I brought my 16 year old son to the Dr to get his cat scan results for why he has a headache every single day (we thought migraine at first). When they gave us the results they advised he needs to go for a brain mri because his Cerebellar Tonsils are low lying and they are currently at his cervical spinal cord and they feel he might have Chiari Malformation. When I asked the Dr for more information he state he didn't know much about it can you guys please tell me more about this and anything that i could do to help my son? thank you so much

[Heather1125]

thank you Frankie

[Heather1125]

Yeah I am learning that about traveling. My husband has mentioned he might want to move out of state for work I told him where ever we go we have to make sure there is a specialist we can get to for john

[frankie_rush]

It sounds like Selma is got you taken care of.  You sound like a good mom, learn all you can and ask questions cause a stupid qestion is one that is not asked.  Even if it is to ask what color of socks he is wearing.

[selmaS]

  Keep in mind u may have to travel...so many of us do, to get the right Dr, as that is key .

[Heather1125]

Thank you for the list I am going to see which of the drs is in my area

[selmaS]

  HI we do have a list of Drs here so u can use to research Drs....the list is not a referral and all Drs may not be true Chiari specialists but have treated a member here for chiari.   http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562

Also request copies of ALL testing that is done...do this when u go in for testing and u sign in, if u do not have recent tests call the facility to request it so u have the copies for ne future opinions u will want to get....it is easier if u have the copies instead of waiting on them.

[Heather1125]

Thank you so much, I'm going to start looking for specialist's and asking the dr to have all of those MRI's done so far they havent told me much

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry that ur DS is going thru this and that u as a parent r going thru this as well, It will be a bumpy and frustrating journey, but u have a leg up in that u r advocating for him urself by asking what is this and what can u do to help him, Thank u for doing that <3

Chiari Malformation is the malformation of the cerebral portion of the skull, the area that holds the cerebellum, Since the area is smaller that it should be it forces the cerebral tonsils out and onto the spinal cord and brain stem.
The herniation can cause a CSF obstruction which causes much of the HA's and other symptoms so many of us deal with.

SO a CINE MRI is very important to have done as well as a brain MRI W/WO contrast, a cervical MRI, a thoracic and lumbar MRI as Syringomyelia needs to be ruled out too,

With the lumbar MRI they can look to rule out tethered cord, and with all areas also take a look at the disks to see if there is an issue with bulging disks, scoliosis...etc.

With the CSF being restricted this can stop all neuro signals from getting to ur brain and organs, that means ur heart,lungs, kidneys...everything  can be affected by this obstruction,

U will want to find a true Chiari specialist not a big named hospital, look to the NS and the experience they have with Chiari....

Make sure they r ruling out ALL related conditions, like sleep apnea, ICP, POTS, syringomyelia, tethered cord, ehlers-danlos, as all of these can affect how he feels and heals should he have surgery.

I hope this helps u somewhat, but keep asking....((hugs))