My son had the decompression when he was 3 and is doing quite well. My daughter has epilepsy, her specialty is gran mal. This is caused by a very rare dysplasia of the brain. We just got the results of the last of her umpteenth MRI's. Now they have diagnosed her with Chiari Malformation as well. I was once told that it isn't genetic. Because of my migraines they are wanting to test me now. So with 2 children having this is it or is it not genetic. I can't find any concrete evidence of either. Seems it is still a contreversy between specialists. Any help you can offer? Anyone? Please? Thank you
The research on chiari and genetics is still out...no one has the definitive word on it, but many feel it is a good possibility.
I know families that several have it, and there r some where there is only 1 that is known.
I for example, am the only person in my immediate family, but I have a cousin with spina bifida....and he has a niece with it as well....
SO it really depends on whom u ask....but the verdict is still out.
Hi, I am 34 and a mother of three boys. I found out in Oct. of 2010 that I have a Chiari 1 Malformation. My middle son is 14 and had what I felt like was a lot of the same symptoms that I am having so I decided to have him tested because I have also heard it could be hereditary. To my relief he does not have it. I thought I might as well have my other two boys tested just to see. My oldest son was tested last week and he does have low lying cerbellar tonsils but not what they are considering a true Chiari Malmormation. Some would call this a Chiari 0. He has no symtoms (symptoms) except he walks on his tippy toes and always has??
I still have my youngest son to be tested, he is 11. I will post again after he has his MRI to update rather he does or doesn't.
I definitely think it runs in families. I had an great aunt who passed away at 15 from complications of Spina Bifida.....
I know they are doing alot of research now to see if there is a genetic link. I did find out that my maternal aunt was diagnosed as well. However, the doc that diagnosed her said "no big deal" and she believed it. To date she has been diagnosed with everything from lupus, schleroderma, DDD, arthritis in her spine, and frequent migraines. She refuses to make the connection that just maybe some of her issues may be related and she may need to have it investigated further. My mother passed away many years ago and I suspect she may have had it but there is no way to know now. My son has had an MRI and it looks like he may have some crowding but doesnt have the herniation. I am taking his MRI with me next time I see my doc just to let him review it as he has frequent headaches with vision disturbances. So I personally think there is a link but I guess the future will tell.
Thank you both for the comments. I would really love to hear what turns up with both of you. I am just so lost right now and I had my test today. I am just waiting to see if this is what is going on with my migraines and pains. I just don't understand much of it. When my son had his surgery I was told it isn't genetic. But how can it not be if I have 2 children with it? I just don't know how to put another child through this. Not to mention she isn't a typical child anyway. She has dysplasia of the brain and is a gran mal epileptic on top of it all. I just hate having to put my children through anything like this and it is tearing me apart. Sorry for the ranting. Thank you both again.
I have it, and had surgery in November. Because my daughter has scoliosis (oddly, I do not), my NS recommended that we have her tested. Her mri looks very similar to mine. You can see the herniation, same shape as mine, as well as the hydromyelia (or residual canal). My NS reviewed her mri, and did not see reason for concern (action) at this time, considering she is not obviously symptomatic, so we are waiting until after her high school graduation to discuss it with her. We used to call our DD a "mini me", but now, this hits a bit too close to home...
It makes me wonder -if I had an mri at her age (18), maybe mine would have looked like hers (excluding the scoliosis)... ?
I was told it wasn't genetic too....yet I keep hearing stories like yours over and over. My youngest son sees a NL twice a year b/c he falls down without reason (once in a while) and continually chokes when he drinks fluids and sometimes with eating. When I mentioned that I had Chiari, she didn't discount that there could be a hereditary connection. I personally believe that there is one...even if it's put down to the genetics of the skull malformation.Then you tie other facts in that run with Chiari, scolosis, EDS, tethered cord...all which may be genetic to.
I haven't pushed for a MRI yet, b/c I know they need to sedate him and there isn't major signs or symptoms at this point.
So for me, I keep my eyes open to what is going on with my kids but I try not to hover either :) The good thing is we know what to look for.
Sleepypea- As a child I walked on my tippy toes and that is still a major problem now!! When I told several specialists, they told me that it isn't normal to do so and may have been an indicator. So keep an eye on your son for other signs!!
My MRI came back good. No signs of the Chiari Monster. So that's good and bad for me as we still have no idea why I keep migraines and headaches. My son and daughter are both going to UAB in March for a Chiari Clinic. I just hope they can tell me what we are going to do. I know that the wait will probably kill me. Hmmmmm, stress = headaches. lol Ahhhhh, gotta laugh to keep from crying. I will keep you all informed and thank you so very much for sharing your stories with me. For once I feel as I am not alone. You are all my new confidences and I thank God for each of you. God Bless and have a great night.
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