I am really new to all of this as I was just diagnosed last March. But I was wondering if Chiari and all of the things that go with it are hereditary.
I just found out this that my uncle has syringomyelia. He has never been told that he has Chiari, however he has heard of it so I assume they must have talk about it at an appointment. (My Uncle received very poor treatment and is nearly a quadriplegic so he has extensive medical care now due to the surgical procedures preformed in the 80's.)
I thought I was interesting since my research tells me these two are seem to go hand in hand.
Also, I wonder if its worth mentioning my uncles condition to my neurosurgeon visit on July 24th.
NO Chiari Malformations has not be proven to be hereditary. Most NS's lean one way or the other on the heredity question. CM does run in some families, but not all. I believe it can be hereditary even though it hasn't been proven yet but just because you have a CM doesn't mean yours is hereditary. Mine is specifically a congenitial disorder from a specific cause. Agent Orange (Dioxin) 2nd Generation Contamination. My Dad was a Navy Seal in Vietnam and has AO related medical diagnoses.
Please see the following studies being ran currently to try and locate a genetic marker for CM.
All Research can be found at www.clinicaltrials.gov then just search for Chiari Malformations or any medical topic studies you may be interested in researching.
You can also find additional information about Agent Orange (Dioxin) Contamination at www.covvha.net . It's an incredible group. You can also research the Agent Orange ACT signed into law in 1991 by President Clinton.
Interesting. I am actually going to a new NS about a pituitary tumor, none of them seem to care too much about my Chiari. I was hoping that with this new info about my uncle that might inspire them to look a little further into the possibility of a sine (??) mri (is that right) to check the csf flow. They don't seem to think the chiari is the cause of my headaches.
I was told by Dr, Tew that Chiari has a 12% pass rate from mother to child. I do not know anyone in my family that has it, however my son had it when he was born. (Before I knew I had it) He had to have the decompression done at 13 months old because it was so severe it was preventing him from being able to stand and walk. That was 2005, I started with migraines in 2009 and found out in January 2013 that I also have it. Dr. Tew said it has been within the last 3-4 years that they have discovered there is a 12% pass rate. There is no specific "gene" that they know of yet for Chiari but it can be hereditary from what he told me.
There is genetic prevalence in some families it is supposed to be very rare & they are still trying to trace the gene in families.
I happen to be one of those lucky families!
My sister was diagnosed 11 months ago with Chiari1…
I was diagnosed with an AVM & Chiari1 on Feb 14/13. Mine is 8mm big & my sisters is 11 mm big. My sister is trying to hold off surgery as long as possible. As she is moving back to Ontario, Canada this month where I am also located we are hoping for possible gene testing to locate the gene for our children.
We are fortunate as Hamilton & Toronto & Buffalo hospitals are all close to us and are all experts in Chiari from what I’ve been told to date.
My son & her daughter both suffer from major migraines amoung other things. My son was sent for an MRI a few weeks ago & we find out the results tomorrow if he has Chiari… He has no idea he was even tested for it! It was everything we could do to get my 12 yr old into the MRI machine as he already is an anxious child, it was late at night, so the amazing tech let me lean in the table & talk him through his whole MRI or he never would’ve stayed longer than 3 mins!
Have you asked the NS if, he is concentrating his focus on the tumor because he has prioritising your treatment plan and wonder why he is not addressing your CM? That is what I would want to know. Then if he tells you he doesn't think your CM symptomatic or you should take the wait and see approach, ask him to explain to you how he has come to these conclusions.
CINE MRI and ask for one. Did your MRI show a large herniation or any possible blockage or syrinx?
hayperk said:
Interesting. I am actually going to a new NS about a pituitary tumor, none of them seem to care too much about my Chiari. I was hoping that with this new info about my uncle that might inspire them to look a little further into the possibility of a sine (??) mri (is that right) to check the csf flow. They don't seem to think the chiari is the cause of my headaches.
I think maybe the pit tumor is easy to deal with. LOL. And maybe that's why they are taking care of it first. Plus its a lot more common. That's what actually brought me to the NS and the discovery of chiari. I only know I have it because he casually mentioned it when he was reviewing my MRI. I'm the only one who seems to be worried about it. They said my herniation was 9 mm. He said my tonsils weren't that long, but they were rather fat. And kind of left it at that. So....that's where I'm at with this. My NL seems concerned and is sending me to a new NS that I will see in July and I am hoping she will want to take care of both problems!
TracyZ said:
Have you asked the NS if, he is concentrating his focus on the tumor because he has prioritising your treatment plan and wonder why he is not addressing your CM? That is what I would want to know. Then if he tells you he doesn't think your CM symptomatic or you should take the wait and see approach, ask him to explain to you how he has come to these conclusions.
CINE MRI and ask for one. Did your MRI show a large herniation or any possible blockage or syrinx?
hayperk said:
Interesting. I am actually going to a new NS about a pituitary tumor, none of them seem to care too much about my Chiari. I was hoping that with this new info about my uncle that might inspire them to look a little further into the possibility of a sine (??) mri (is that right) to check the csf flow. They don't seem to think the chiari is the cause of my headaches.