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3175359 tn?1348075033

Spina bifida mystery

Hi. I am pregnant w my second child. DS was normal pregnancy, birth and is a rambunctious 13 mo old. Currently 17w with baby #2 and received sky high AFP levels (99th percentile).

I had an early anatomy scan today and while everyone was really straight and clear u guess I'm still a little confused.

The Drs saw no open defect but said the spine is scoliotic and the sacral vertebrae looks malformed. In addition, they saw dimples in the front cerebrum and a flattening in the back of the scull, confirming a "lemon banana" possible Chiari malformation/herniation. They are stumped feeling like the brain abnormalities should show an open defect.  I had an amino done this afternoon & have an MRI scheduled for tomorrow.

Anyone help me out with what to expect or questions to ask?
8 Responses
620923 tn?1452915648

  Hi and welcome to the Spinal Cord C/D forum.

I wish I knew what questions to ask...but not sure I understand why they feel it should be open....I am in my 50's and was born with Chiari Malformation....they could not do the testing they can today back then and my mom nor I had a clue I had this condition....I did go to Drs for yrs trying to figure out the cause of my many symptoms and headaches...but I was 48 until I got the DX...so not sure why they feel the need to do testing and scare you like this....granted it is not a condition anyone wants for their child...but also not sure why the Drs are  so  intent on scaring you this way.....

With the scoliosis many with Chiari can also have tethered cord which can cause mild scoliosis....I too have that and just found out when I got my Chiari DX...even tho my spine was checked in school  and by the Drs....

It is a smaller skull that is the description of Chiari..it is the malformation of the skull.....since the skull is so small, it forces the cerebral tonsils to herniate...this herniation can obstruct CSF flow and then cause the formation of a syrinx....a syrinx can  stay stable for yrs and not cause an issue or it can increase in size and put pressure on the nerves....left untreated it can lead to severe issues.

All I can really do is send prayers for your dear child and yourself....please keep us posted.

PS- when I was pregnant with my daughter I was told some blood labs came back showing some malformations...(no MRI's then) so I had her and not one problem...I really feel those tests were showing my issues and not my childs.
3175359 tn?1348075033
Thank you for your prayers and info. I had no idea that chair I could be a separate thing all on its own.
My dr saw the skull was more elongated with puckering up front and flattening in the back. He feels this is most highly related with the brain being pulled back by something, most often seen in open spina bifida. Other then the sacral vertebrae malformation he could find no skin openining or SB sac which is why he's puzzled.

I'll be posting along the way since I feel really alone in this mess. Thanks for being there.
620923 tn?1452915648

  Chiari is related to Spina Bifida...only there is no opening....

I am so sorry and wish I could offer more info, but at this point it is hard as some of the info could be mis translated...???

I pray that all goes well for your child and you and look forward to updates <3
3175359 tn?1348075033
Hi Selma
the MRI was able to detect an open defect - they think around L2/L3 to the sacrum. Still early to tell because of gestational age. We are being referred to Philadelphia to see if we are candidates for in utero surgery.
620923 tn?1452915648

  That is fantastic !! So glad they could see where there is an issue and are able to do surgery to correct inutero.

Sending <3 ((hugs)) and prayers.

Please keep me posted.

PS- since there is an issue so low keep an eye open for tethered cord as it can form once surgery is done....
3175359 tn?1348075033
Thank you. The tethered cord is now on the list of questions for the docs. We go August 11. Thank you for your prayers & hugs & love!
688115 tn?1410682505
Does anyone have temporary severe bending spasicity relating to out of control utis .
My spina bifida[ occulta] is hidden near /in liver IVP  yet caused neurogenic bladder double ureters& continual infection.I have had only this during life now  68  & possibly poor immunity & cellulitus .Can walk but distance is a problem so have scooter.
620923 tn?1452915648

  Hi and welcome to the Spinal Cord C/D forum.

I am not sure if I understand your question... outside of you have SBO and a neurogenic bladder...and a lot of UTI's

Is the question about pain with UTI's?

I also have a neurogenic bladder and had many UTI's but none in the last few yrs....

Have you been tested for other possible issues/conditions?
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