We just had a 3D ct of my daughters craniocervical junction.
We haven't seen the NS yet - that is on Mon.
I have been looking at it and see some abnormality in her C1. I uploaded a shot if anyone wants to see. All the notes are my own observations.
I am wondering what information anyone might have on the effects of a malformed C1 and causing syrinx.... Every report keeps saying "no chiari" but I can help but think that the abnormality is causing a chiari 0 type senario.
Thanks if anyone can give me any help, tips, observations, etc!!!
I have Spina Bifida Occulta. It caused my CM. I never knew until I was 31 years old and was incredibly active, my whole life. I just had an ocassional headache growing up. Ask your NS about Spina Bifida Occulta. It does cause your spine to form abnormally. It's nothing horrible. There are several types of Spina Bifida. Please do not get upset. It could have caused CM0. Does your NS believe there is a CM0? Some don't. It's very frustrating. Please keep us updated on how your daughter is doing.
Thanks for your input. I had not heard of spina bifida being anywhere other than down low.
We saw my dd’s new NS today and I LOVED him!
So did my daughter!
I asked about the C1 anomalies and he told me when there are things wrong other little things will also be wrong in the same area. Made sense to me.
Anyway, the drs are now talking about doing the decompression because her symptoms are getting worse and the syrinx keep growing.
So, I guess they do believe in CM0.
Anyway- thanks is again!!!
TracyZ said:
I have Spina Bifida Occulta. It caused my CM. I never knew until I was 31 years old and was incredibly active, my whole life. I just had an ocassional headache growing up. Ask your NS about Spina Bifida Occulta. It does cause your spine to form abnormally. It’s nothing horrible. There are several types of Spina Bifida. Please do not get upset. It could have caused CM0. Does your NS believe there is a CM0? Some don’t. It’s very frustrating. Please keep us updated on how your daughter is doing.
