Is Chiari Malformation Genetic ?

Good Morning,

Our son had an MRI and the results showed "Cerebellar tonsillar ectopia, mild", 8mm in size. Our  older son has spina bifida with tethered cord, and our niece was diagnosed with Chiari about 6 years ago.  Is this coincidental or is this a genetic disorder.
After reading some of the post on this forum what does it mean when the term herniation is used as this was not mentioned on our son's MRI.
Our son is 14 years old and has been dealing with alot of symptoms for awhile now, and nobody could tell us why.
He has headaches, dizziness, blackouts, blurred vision, neck soreness, shoulder pain, forgetfullness and memory loss. Although the forgetfullness and memory loss could be a 14year old thing.
We have an appointment with our other son's neurosurgeon next week, and I asked if he dealt with Chiari, and was told yes. We live in the metro Detroit area and was wondering if anyone knew of specialist in our area that deal with this.
Our family doc told us his MRI came back fine, but when I got a copy of the report and saw the DX on there I went online and typed in the Cerebellar tonsillar ectopia in the search area and Chiari came up.  So we are pretty scared at this point.
Any information would be so appreciated.
sincerely,
Mikeysmom1995







Mikeysmom1995

[rod44]

Hi and welcome to our community.

Chiari Malformation is a condition where part of the brain stem hernates or is pushed down into the spinal Colum hens the term herniation. For more on CM and related illnesses go to the MedHelp “health pages” by clicking on the link on the top right of this page.

There is also a page with info on doctors
http://www.medhelp.org/health_pages/Neurological-Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

The symptoms you describe are similar to the symptoms that I suffer. As yet I do not know the size of my herniation. I also have a related condition called Syringomyelia with is a cyst called a “Syrinx” in the centre of the spinal cord and is due to the CM.

I hope this helps.
Ray

[ChiariWolf]

You will quickly learn much of the medical community does not recognise Chiari as a problem. Sounds a lot like Chiari to me, but I'm no doctor.

Just one thing, yes your son needs quailified help asap even if you have to travel. But don't be scared, just take the steps that you have to take to get the best Dr for him that you can. And not just someone who admits to knowing what Chiari is... NO find a doctor who's online profile states they specialize in Chiari. Otherwise it's like throwing your money into a wishing well and hoping your son gets better.

Sorry I'm a good 4 hours from Detroit but perhaps the link Ray gave you will help. I don't see Detroit on the list, if worse comes to worse Cleveland OH is not that far from you. There is a doctor there which I"ve not submitted just yet but would gladly give you his info if you want it.

[selmaS]

HI and welcome to the Chiari forum.

Well the guys did a great job giving u info and answering ur questions.

I want to say this group can offer info, but more importantly it is the support this lovely family offers all members is what helps us all get thru this.

I did notice one of ur questions that was not addressed and that is if this is genetic....there is research going on now to get an answer, but all arrows do point in that direction....I have chiari and tethered cord and I have a cousin with spina bifida.

There r many families with several that suffer the effects of chiari and related conditions.

Finding the right dr is key....u deff want a true chiari dr.

"selma"

[mikeysmom1995]

Dear Selma, chiariwolf, and Ray,

Thank you so much for welcoming me into your group.
We asked when making the Appt. if he treated Chiari patients and the receptionist said yes. We go on Tuesday so we will find out then. This doc is no stranger to us as he sees our older son for tethered cord and spina bifida for some years now. We will ask him straight out if he specializes in this and he will be honest with us.
This is all happening so fast that we do not know what to expect. Will they want to do surgery right away, or just watch him. We are afraid that since he is having symptoms that they won't reverse, like our son with tethered cord. Once his symptoms appeared they did not leave after surgery, which is so what we were hoping and praying for.
Sorry I am just ranting! We are just so worried.
Thanks for listening.

Mikeysmom1995

[n40066]

hi mm!
i'm a bit late in offering a welcome, but welcome aboard anyway!  on this ship, ranting is always allowed!!  heck, i've even had a few rages and temper tantrums on here!  lol!  that's the beauty of this forum.  we're here for everyone and support you thru everything!
just a suggestion, but when you ask him if he specializes in cm, if he says yes, ask how many surgerys he's done and if it would be possible for you to speak with one or two of his patients that have had the surgery.

once again, welcome to our chiari family!
elizabeth