Chiari 1 Malformation

[Kid in Me]

I was wondering if anyone out there has any experience with Chiari 1 Malformation? My dd was diagnosed at age two with this disorder and her recent MRI has revealed it has gotten worse. She has a 6mm decompression. She is not having any symptoms yet depsite the changes in her MRI. We have not met with the specialist yet we are waiting for an appointment. Any info would be helpful. Thank you.

 

[safetymom]

I wish I could offer support but I don't know what this is. I hope someone is able to give you some answers.

 

[KPeveler]

i may have chiari, but we are not sure... i have ehlers danlos syndrome, and so i may only have the herniation when i am upright, but when i am laying down (like in an MRI) it doesn't show. i do have symptoms, but i am afraid i dont have many answers for you... i would suggested checking out www.asap.org, they have some really good information there...

also, check out chiari international, (google it) and they have some good information..

do the drs have any idea why she may have chiari? i just say this because ehlers danlos syndrome (which can be a cause of chiari) can go undiagnosed for decades, and chiari surgery has to be done differently for people with EDS. i wish i had some better answers for you!

 

[CommunicoreGal]

I have Chiari Malformation. Diagnosed at the age of 19 and I'm now 26. www.wacma.com is very helpful and you can join the support group for more answers. If I can help with any questions please let me know. I've had the decompression surgery and am feeling much better


If you join the support group there are many families and different age groups etc so you'll get a rainbow of responses.

Best of luck

 

[KPeveler]

communicoregal - did you go to the chiari institute? I am in CT and I am nervous about finding a good CM dr!! i don't mean to pry, but I am a little nervous!

 

[Kid in Me]

communicoregal - did you go to the chiari institute? I am in CT and I am nervous about finding a good CM dr!! i don't mean to pry, but I am a little nervous!

We are seeing a neuro surgeon who specializes in Chiari Malformations. He is overseeing our daughter now but if she ever needed surgery I may seek other opinions before concluding. I was more nervous 5 years ago, but am more optimistic these days. I did get some helpful info from the Arnold Chiari Foundation.

 

[CommunicoreGal]

communicoregal - did you go to the chiari institute? I am in CT and I am nervous about finding a good CM dr!! i don't mean to pry, but I am a little nervous!

No I didn't go to TCI I went to the Children's Hospital in Boston. I am from MA and that is where I was referred to. I didn't know much about it at the time except for the fact that I was told that I had a big herniation and if I was in an accident I could be paralyzed or dead.

That made me go for the surgery. My symptoms were pretty bad and I was a sophomore in college and couldn't risk it.

 

[KPeveler]

thanks - i didnt know they had people at childrens who knew anything about it! i am at UConn in grad school, so that is not too far away... plus children's takes insurance, unlike TCI. i have not been officially diagnosed, but it has been suggested by my pain management dr (who is also a neuro) and i fit all the symptoms, so it may be worth looking in to.

i am sorry to the OP - i just hijacked your thread!!

 

[CommunicoreGal]

thanks - i didnt know they had people at childrens who knew anything about it! i am at UConn in grad school, so that is not too far away... plus children's takes insurance, unlike TCI. i have not been officially diagnosed, but it has been suggested by my pain management dr (who is also a neuro) and i fit all the symptoms, so it may be worth looking in to.

i am sorry to the OP - i just hijacked your thread!!

The doctor I had also is at Brigham and Womens in Boston as well. I don't know if they cut off on age due to it being a congenital malformation I would think that it wouldn't be a problem. I had Dr. Mark Proctor. He is at both hospitals.

Michelle in MA

 

[Kid in Me]

The doctor I had also is at Brigham and Womens in Boston as well. I don't know if they cut off on age due to it being a congenital malformation I would think that it wouldn't be a problem. I had Dr. Mark Proctor. He is at both hospitals.

Michelle in MA

Thank you for your feedback and info. It is encouraging to know that there are so many good doctors in our area that specialize in this. We saw Dr. Scott at Children's in Boston and so far things have been great. Thanks for the name of your physician. I will keep it handy should I need a second opinion.

 

[momof4ngls]

I know this is kind of an old thread, but my daughter has Chiari. She was diagnosed with a 14mm herniation in May of 2007 and had decompression surgery in November. Her doctor is in Seattle, so other side of the country from the others who've responded here, but he is absolutely wonderful. His name is Richard Ellenbogen and he is at Children's Hospital of Seattle, Harborview in Seattle, and also teaches at the University of Washington.

 

[CommunicoreGal]

He is an excellent Dr. from what I've heard. I wish the best to your daughter. If you have any questions feel free to post on here or email, and I'll get back to you.

Michelle in MA Dx at 19 now 26.

mmp062581@yahoo.com

 

[BillyM]

i have Chiari and had surgery 4 years ago did not stop the headache put did stop some of the other problems i know people worry about having the procedure but it is well worth it i have had 2 back operations also and the Chiari was not as bad as them i live in louisiana so my doctor was here

 

[Kid in Me]

i have Chiari and had surgery 4 years ago did not stop the headache put did stop some of the other problems i know people worry about having the procedure but it is well worth it i have had 2 back operations also and the Chiari was not as bad as them i live in louisiana so my doctor was here

Thank you for all the positive feedback. I have met with my daughter chiari specialist and she isn't at a point where they would consider doing the surgery. However, at some point she will need to do it. I feel more optimistic after receiving so many positive emails about others who have done it.

I am happy to hear your was a success and you are not suffering as much.

 

[Earstou]

Another Chiarian here! I had the decompression surgery in 2002 by Dr Oro, who I highly recommend to anyone! He also did my cervical fusion (unrelated to my malformation) and did an excellent job on that surgery, too.

 

[marceeinWA]

oops

 

[marceeinWA]

I know this is kind of an old thread, but my daughter has Chiari. She was diagnosed with a 14mm herniation in May of 2007 and had decompression surgery in November. Her doctor is in Seattle, so other side of the country from the others who've responded here, but he is absolutely wonderful. His name is Richard Ellenbogen and he is at Children's Hospital of Seattle, Harborview in Seattle, and also teaches at the University of Washington.

Hi momof4ngls - my ds has been diagnosed with Chiari and is having surgery with Dr. Ellenbogen in Nov. I would love to chat with you through e-mail or phone if you don't mind.

 

[MacDisney]

My daughter is 6 years old and has a Chiari malformation Type I (bordering a type II) with an 11mm herniation. As an infant she was diagnosed with an intranasal encephalocele (part of her brain was in her nose) she had 2 open craniotomies at age 7ms and is followed yearly with MRIs by Dr. RIck Abbott at Montifiore Childrens Hospital. At about age 2 she was found to have a Chiari Malformation...now don't let them scare you that it is getting worse...it is the size it is...the brain and skull will grow and not always in proportion to each other...I know since my daughters has gone from a 3mm to a 6mm to a 15mm back to an 11mm. You don't know for sure what size it will be till puberty when the brain reaches its full size. That is usually when the major symptoms occur although they can appear at any time..or NOT AT ALL. I am a Physician Assistant and met a woman at 35 yrs old with mild neck discomfort...mild remember and I had a MRI done and she had a 9mm herniation and the neuro surgeons are just watching it...no neurological issues AT ALL and she maybe has a headaches 1-2 a month (don't most of us?) My daughter hasn't really had any Headaches to speak of...some urinary incontinence. I was crazy about potty training until I read on a board that incontinence is a frequently associated with CMs. They are doing a ton of new research as which kids need decompression surgery and which ones do not. You can check on this web site conquer chiari .org. It has been helpful to me. If you have any other questions or just want to talk...my email is mcmja@aol.com. I think it is so helpful to talk with other people dealing with this as well. If I could take this away from my daughter I would ... I hate the not knowing and the what ifs. As an FYI make sure to find a MRI location that has the DVD player so you do not have to subject her to anesthesia as she gets older...my daughter did it at 5 (1 1/2 hrs and just watched a movie) Its worth traveling to use one. All my best! Alisa....another Mother who loves disney and uses our trips there as a reprieve from the Chiari worries!