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Can anyone give me your thoughts?

My daughter was just diagnosed with a 9mm chiari malformation and 3 syrinx one of the ones in the cervical thoracic region was 6x6x35mm.  I'm not sure what that really means.  My 19yo son just had decompression surgery in January and his was much bigger going from c3 to t12 and width was 13mm.  Unfortunately, he did not have a chiari specialist oversee his surgery and he now cannot feel his legs from his mid-thigh down.  He was in the Navy when it showed up and was asymptomatic before then.  Since his situation I started researching and found that my kids all have various symptoms.  The neurologist that saw them strongly suspects Ehlers danlos and decided based on my son's history he decided to do MRI's.  My 17yo had low lying tonsils at 3mm and so far this daughter.  She has an appointment coming up with the chiari specialist that now oversees my son's case.  She has suspected EDS and she also has autism.  She does not really verbalize pain or things like that well and I know she will not speak with the doctor at all.  She has scoliosis and kyphosis.  She holds her hands above her head all the time like she is trying to make herself feel better.  She has always had low muscle tone.  The symptoms she had as a baby fit very well with the symptoms of chiari.  She struggles with vision and auditory processing disorder.  She has slight hearing loss in her ears.  Anyways, I emailed the doctor and he read her reports and he does think she needs to be seen by him with decompression surgery likely recommended.  My question is since she isn't really able to verbalize pain well (she also has a very high pain tolerance) how will we be able to ascertain her pain level after surgery if she has surgery?
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620923 tn?1452915648
Hi and welcome to the Chiari forum.

WOW, I am sure you are feeling a tad bit overwhelmed with all you are going through.
My I suggest something that has recently come to my attention....have your daughters Drs check her for any tongue ties...it can affect those with them in very odd ways, and in some newly read research my daughter and I have found that it can be related to not only Chiari but to autism and ADHD....and a few others as well.

As for how to tell if your daughter is feeling pain wise post op....try having her explain pain while doing a task, such as lifting heavy books.....hold three is ok, but 7 books is too much....she may do better saying I can hold this many but not that many....having Chiari it can hurt to lift or hold heavy items....just an idea. But do it prior to surgery should she be a candidate for it...so she can get used to lifting the books and saying which ones she can hold.Then do it post op, or ask how many can you lift...it should give you an indication of where she is pain wise.

I hope this is helpful.
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Interesting what you said of the tongue ties, I read about some with CM in Norway that had gone years without help and/or had decompression surgery, etc, that found a clinic in Spain (search for Chiari clinic in Barcelona), that cuts the filum in the back, which has relieved many CM patients, and also those with scoliosis and other things, since it has been too thight, like with the tongue tie.
They mean it's the reason to why the cellebrum/tonsils is pulled through the foramen magnum, and the first option to try in Spain, before doing a decompression, etc, as it's greater risks when they need to open the dura for leaks and complications post-op. They take decompression as step two if it doesn't help cutting the filum, that's less risky, and where the patient can walk out the same day, or the next.
We have only one as far as I know, Chiari "expert" in this country, that was negative towards it at first, but then later posted it in the medical journal, probably after talking with the clinic and patients himself.
He apparently still have some to learn though, as to what Chiari can affect, as people who have troubled with arms and legs, isn't seen as it can be the CM. one can never learn too much about a thing.
The only weird thing with the clinic is that they don't grade the types in the form, they called type 1 Arnold, which is type 2... but the references speak for themselves.  

You are referring to Tethered Cord...I was diagnosed with that , and many do not feel releasing it helps as it can rethered.....and many times it does and then scar tissue forms....so, it can be something that needs to be done multiple times. Tethered Cord is not always seen on a MRI.....and is sometimes referred to as Occulta Tethered cord...occulta meaning hidden...
May I ask where you are located?...Spain?
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