Hereditary

[gayerod62]

Are Arnold-Chiari malformation and pseudotumor cerebri hereditary, and are they related?

[dpulum]

Although the docs always claim that CM isn't really hereditary, it runs in my family.  My sister, my nephew and I all have it.  My Mom also had surgery for a very similar condition in the 70's, although they didn't call it CM.  My Grandma had the same symptoms as my sister for my entire childhood, so I'd be shocked if she didn't have it too.

We all also have spinal cord issues.  My sister and nephew have spina bifida and my Mom and I have cervical stenosis.  My neurosurgeon was a CM specialist and he said he'd only seen a couple of families with prevalence like my family, so I don't think it's very common...I hope not, I really hope and pray that my kids don't have this too, although I have been very blessed to have come out of the surgeries much better.

Tina

[selmaS]

  Her best bet is to be seen by a Chiari specialist and find a way to release the amount of CSF that is building....DIAMOX is one med that is used, when meds do not help many times surgery is the next option.

Has she been to a neuro optho?

[gayerod62]

No.  She was taking Diamox until the dosage got to be too much, now I think she is just dealing with it, and I am afraid she is going to go blind in the next few yrs.

[girlinxile]

After I was diagnosed and the family was talking.. pretty much every woman on my moms side has many of the symptoms but they are minor... but literally every one of them got headaches with sneezing or coughing, issues swallowing, neck pain, headaches. ... all kinds. So when my 17 year old daughter (who has had headaches since elementary school) started having severe neck pain and worsening headaches her dr ordered an MRI and she was 2 mm herniated- so not technically chiari right? However her symptoms are continuing to get worse so she goes back to the dr tomorrow.. I want a csf flow study. One of the dr's in my dr's office has a dad with 3 boys who all have it so yes, it can be familial

[NurseGayle]

I have ACM & my daughter has it.  When I did my research 11 years ago most said they felt pretty sure it was hereditary.  I believe my father probably had it as well as he had bad migraines too.  You can get chiari from a traumatic fall or injury also.  They call that type 2.  Type 1 means you are born with it.  There are numerous associated conditions such as hydrocephalus, spina bifida & pseudotumor cerebri.  You can have many symptoms such as vision disturbances, headaches, arm/neck pain, etc.  I had my daughter tested when I found out about mine because she had bad headaches at age 13.  If any family member has symptoms (there is a list on most chiari websites) it is important to have a MRI cine done.  You need to be cautious if diagnosed & take care with the head/neck & avoid things like roller coasters & sports that could make it worse.  Best wishes in your search.

[selmaS]

   A true Chiari specialist is the one to talk to regarding ur concerns and these topics...we can give our opinions, but we are not medical professionals.....

It does sound like ur sister most likely has Chiari as well....did she ever have surgery or more testing?

[gayerod62]

My reason for asking is that we found out by accident about 2 yrs ago that my now-8-yr-old granddaughter has the chiari malformation, from an MRI after she fell and hit her head.  Within that same time frame my sister began having debilitating headaches until, after week of pain and several trips to the ER, she was seen by an eye specialist.  Turns out it was pseudotumor cerebri, and now she has vision problems.  I have wondered since if they were tied in someway, partly because my granddaughter was obviously born with the chiari malformation and, in my sister's case, she was born in 1964 six weeks early, and with no deformities visualized on the outside.  I have wondered if she may have had the chiari malformation when she was born.  Anyway, thanx for your response.  I just wondered if there might be someone out there who had any information on the subject.  Thanx again!

[wonderchiari]

hi welcome here.I too have had this doubt for too long.

As far as I have read there are cases of more than one of the family

members having chiari and or related conditions.In all these cases comes

out at some point of time .

However there is no definite confirmation that it is hereditary.

many seem to think it might be becoz more than one has it .so it could be so .

personally in my case No one in my family or relatives   have ever even

heard of chiari or syringomyelia or psuedo cerebri or even migrane

headache .None knows about any neurological condition .God bless .

leave alone chiari neither  my parents who are quite old  nor siblings  have never had any sort of neurological check till date .,or ever seen a neurologist .

So I personally feel in my case it is not hereditary.

But It could be in some cases it might be passed on.

I do feel personally that should be some sort of defective gene causing chiari .and or related conditions though .no such  has been identified till now .

But that gene(if it does exist ) need not necessarily be passed on  to everyone in the family .

Pseudo cerebri is known to exist in some with or without chiari .

[selmaS]

  Hi and welcome to the Chiari forum.,

As Munchies mentioned most Drs will not say Chiari is  hereditary as there are still researching and testing this possibility

And yes pseudotumor cerebri  is related to Chiari.....but it can occur in some that do not have Chiari Malformation.

[Munchies2012]

To be honest on the facebook group and other places online. Ive seen numerous people list family members with the condition and quite a few women who have nearly all their kids have it also. But doctors say it isnt...