Zippeheaded Zebra

[ChristyGirls03]

One of my daughters has Chiari Malformation and a Primary Immunodeficiency (CVID). Her surgery was April 26th with a 15 mm herniation. How many other people have both a PIDD and Chiari Malformation?

[Messengergirl77]

My son is 21.  For two years 2915 we have dealt with repercussions of RMSF and Erlichia.  We have also found IGG Subclass 3 deficiency and now 2018 Chiari.  MRI in 2015 did not show one.

[selmaS]

Hi and welcome to the Chiari forum.

Chiari is typically a congenital condition which is a malformation of the skull....if he has Chiari it was there, just not reported....many Drs also do not classify Chiari if there is not a cerebral tonsil herniation of 5mm's or longer....the herniation is a result of Chiari not the other way round.

Chiari itself can lay dormant unnoticed  and something can trigger the symptoms to flare....with the issues of tick bites and the  IgG issue I can see that as a possible trigger....

But I also feel if he has Chiari now, he had it then and it just wasn't noticed or the Drs felt it was an incidental  finding which happens often with this DX.

Educate yourself on Chiari and ALL related conditions and research Drs....if you need help, just ask

[Ecain7846]

I have a 9 yr old with CVID and now chiari also I'm so confused how can our kid have not one but two very rare diseases in the same little body I'm so scared an unsure of everything... any advice???

[selmaS]

Hi and welcome to the Chiari forum,
First Chiari is not a disease and is not rare it is not well known but more common then MS. Chiari tends to not come alone....and is usually accompanied with auto immune disorders  so it is not rare to see it with the CVID....however you are the first on this forum to share about someone with these 2 together.Or the first to have this DX that I am aware of.

Find  a true Chiari specialist and be advised you may have to travel to get to one that is well informed and experienced not only with Chiari but ALL related conditions.

[Trixie2000]

My son had chiari decompression at age 14. He's now 16 diagnosed with primary immunodeficiency as a result of Lyme Disease, Babesia, and Bartonella - which we didn't know he had before the chiari surgery. We're getting ready to do IVig. He hasn't been to school since the surgery 2 years ago. He also has PANS, EDS, and POTS.

[natallie3451]

I also have cvid and have a chiari malformation.  I receive ivig and had surgery to release the pressure to my brain.  I'm 44 and my health is very poor.  Before the brain surgery I had severe headaches from the ivig treatments.

[selmaS]

  Hi and welcome to the Chiari forum.

I have not heard of this issue involving a chiarian b4, and it is not that it may not exist with others it is just who even knows how this  is dx.d and what the symptoms r, we may have some that may be undx'd...

  Can u explain how this affects ur DD?