mayashekhina
09-21-2007, 06:15 AM
Ok Im kinda celebrating and worried at the same time, I have a little girl experiencing sounds for the very first time - the sound of my voice the sound of her name it is so cool.
I had to take beth for xrays on her neck this week to ensure that there was no weakness, anyway she has no weakness... are you ready for the but?... Yep but she has some other things, she has a partial assimilation of the arch of C1 into the skull base which basically mean part of the top of the spine is at one with the skull base ;-) which accounts for the stiffness in the neck but here is the concerning part and possibly the cause of the craniosynostosis (which apparently was labelled on her original Ct report as a multiple problem not what I had previously been led to believe -my paediatrician kind of read out the report over the phone when seeing if the Ct had reported anything on the neck) There are dysplastic changes affecting the occipital bones consistent with craniolacunae. I remember seeing beths ct scan and wondering what the unusual holes on the left side of her skull were (looked like a freaky honeycomb) but at the time really didnt want to know unless the docs wanted to tell me.
#Craniolacunae (Lückenschädel): Craniolacunae are translucent, sometimes almost transparent areas of thinning of the bones of the cranial vault. They can be seen in Chiari II malformation and other forms of intrauterine hydrocephalus.
Craniolacunae
<!--BeginGlossary-->(also called lacunar skull, luckenschadel), abnormal development (dysplasia) of the membranous bones of the skull seen in association with myelomeningocele, myelocele and encephalocele. The normal development of the membranous skull requires distension of the developing brain and ventricular system. The skull develops from ossification centres in each cranial plate. As the brain expands collagen bundles in each centre are drawn out in an orderly radial manner. Ossification of the collagen bundles also takes place radially. In patients with craniolacuna the collagen bundles are disorganised and form whorls with varying thickness of fibrous tissue between them. Ossification of the collagen bundles occurs in a disorderly manner producing craniolacuna. This is present at birth and is independent of the presence of hydrocephalus. It lasts up to 6 months and then resolves(I am assuming Beths does not appear to have resolved). It should not be confused with normal convolutional markings seen in the vault during the period of rapid brain growth (3 to 7 years)(should I be holding my breath during this time?).
In my paediatricians opinion this could account for the cranio stuff and probably helps explain the doctors comment at the craniofacial clinic when they said there was alot more going on with the growth of her head than a typical cranio case and their added hesitancy in doing the surgery- which proves my own instincts were so right all along, she may have ended up having a huger ordeal on her hands had we done the surgery than by not doing it. I think this definitely seems like one of those situations where it is better to stick with the devil you know than the devil you don't, the MRI should be interesting- still awaiting a date for that.
I had to take beth for xrays on her neck this week to ensure that there was no weakness, anyway she has no weakness... are you ready for the but?... Yep but she has some other things, she has a partial assimilation of the arch of C1 into the skull base which basically mean part of the top of the spine is at one with the skull base ;-) which accounts for the stiffness in the neck but here is the concerning part and possibly the cause of the craniosynostosis (which apparently was labelled on her original Ct report as a multiple problem not what I had previously been led to believe -my paediatrician kind of read out the report over the phone when seeing if the Ct had reported anything on the neck) There are dysplastic changes affecting the occipital bones consistent with craniolacunae. I remember seeing beths ct scan and wondering what the unusual holes on the left side of her skull were (looked like a freaky honeycomb) but at the time really didnt want to know unless the docs wanted to tell me.
#Craniolacunae (Lückenschädel): Craniolacunae are translucent, sometimes almost transparent areas of thinning of the bones of the cranial vault. They can be seen in Chiari II malformation and other forms of intrauterine hydrocephalus.
Craniolacunae
<!--BeginGlossary-->(also called lacunar skull, luckenschadel), abnormal development (dysplasia) of the membranous bones of the skull seen in association with myelomeningocele, myelocele and encephalocele. The normal development of the membranous skull requires distension of the developing brain and ventricular system. The skull develops from ossification centres in each cranial plate. As the brain expands collagen bundles in each centre are drawn out in an orderly radial manner. Ossification of the collagen bundles also takes place radially. In patients with craniolacuna the collagen bundles are disorganised and form whorls with varying thickness of fibrous tissue between them. Ossification of the collagen bundles occurs in a disorderly manner producing craniolacuna. This is present at birth and is independent of the presence of hydrocephalus. It lasts up to 6 months and then resolves(I am assuming Beths does not appear to have resolved). It should not be confused with normal convolutional markings seen in the vault during the period of rapid brain growth (3 to 7 years)(should I be holding my breath during this time?).
In my paediatricians opinion this could account for the cranio stuff and probably helps explain the doctors comment at the craniofacial clinic when they said there was alot more going on with the growth of her head than a typical cranio case and their added hesitancy in doing the surgery- which proves my own instincts were so right all along, she may have ended up having a huger ordeal on her hands had we done the surgery than by not doing it. I think this definitely seems like one of those situations where it is better to stick with the devil you know than the devil you don't, the MRI should be interesting- still awaiting a date for that.