6yr old w/ chiari and syrinx

[Tracysiller]

My 6year old dd has chiari and a small syrinx (c6-c7). (I have chiari with no syrinx and had to have surgery.)   Her only symptom is almost daily headaches. Her NS is going to try melatonin hoe the HA.
Anyone know the odds of her needing surgery later in life?

[The_beat_goes_on]

I think the fact that this doctor didn't even want an MRI of her cervical spine with chiari is a huge red flag.  Selma is right, she needs her entire spine scanned.  You mention Texas Children's so I'm assuming you're in the area.  Have you looked into Dr Stephen Fletcher?  He is with memorial hermann and a pediatric chiari specialist. He might be worth a look.

[selmaS]

  I feel it is necessary to do the thoracic and lumbar spine too as a syrinx can form there too...how will they know if it is there?

The other problem is they only expect them to be in the cervical spine....which is not true...they may be more common there after an injury as it is the most likely place for an injury related syrinx...but this is not injury related....ugh

[Tracysiller]

At Texas children's. He is unaware of the syrinx but also didn't feel it was necessary to do the c-spine. I think it's time for a new NS.

[selmaS]

  It is possible for a syrinx to be congenital or from an injury to the area or scar tissue....but most times it is an obstruction of CSF flow....

Since I had an obstruction surgery was advised to prevent the formation of a syrinx since I did not have one yet.

Who is this NS?

[Tracysiller]

I guess I didn't realize syrinx meant obstruction of flow..... I just thought it was there.
I asked her NL and NS about a sleep study and they both felt it wasn't necessary. At that point I was ready to give up on the sleep study. I took her to see her pulmonologist and I listed the chiari as a new finding and the first thing out of his mouth was "did anyone order a sleep study?".  Shocker that he was more on board with what needs to be done. Anyway, she has central but it's very mild and he's not concerned with it at this point.
Also, she's had odd things (respiratory wise) that he thinks could be related to the chiari. NS didn't agree.

[selmaS]

  First to address the length of herniation, no it is not really mean much, if it is creating an obstruction that is the issue, since there is a syrinx u know there is an obstruction.

The different lengths could be the slice and the way they set up the machine.....imagine an upside down pear, slice into 3rds.. if u look at the left and right slice they will be close in size however the center slice may be longer....so, it is not a big difference and just nothing to really be overly concerned about.

Not sure with a syrinx she will never need surgery regardless how how the syrinx formed ....since it is there , the possibility it will grow is there....

As a mom I understand ur concerns and wants for ur child...but with this condition not sure how long she can go with out surgery unless a new way to treat all this comes along.

U deff want a ped Chiari specialist....

U will want more testing...rule out EDS etc...and sleep apnea especially since she is a child they are more prone to develop this related condition.

[Tracysiller]

Hi. Selma. I was hoping you'd answer. As always.... I appreciate you.
I know her NL is knowledgeable about Chiari but I don't feel he's a chiari expert.  I have not spoke with her NS about the syrinx yet. Having gone through this myself I know that she's not ready for surgery. (Mom radar). I just don't want her to ever need it.
BTW when they did the MRI they did the brain and the C-spine about two weeks apart and on the brain MRI the measured chiari at 7 (same as last year) and on the c-spine they measured it at 6. Is that irrelevant? Also, on the brain MRI they indicate that there was "reduced flow".

[selmaS]

  I would ask if this Dr is a Chiari specialist...and if she has a syrinx it is most likely due to a CSF obstruction....with a syrinx u can have more or less symptoms, but it does not mean much especially with a child as she may consider many of them "normal" since she has always had them...and she may not feel some as the syrinx may be blocking those signals from getting thru....

I would want to know how big a CSF obstruction is there and how is it affecting her over all health not just what a 6 yr old may articulate as the way Drs ask about symptoms confused me...and I said no, when in fact I did have those symptoms...so it is a very grey area and u have to ask her differently about how she feels....as a mom I am sure u know ur child...so follow ur mom's radar.