Lambdoid synostosis diagnosed late. Help???

User - posted on 04/05/2012 ( 13 moms have responded )

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My son was diagnosed with lambdoid synostosis this winter. He just turned 3 years old. I am looking for anyone who has dealt with this in the toddler years. He was misdiagnosed as an infant. We can't find any pictures, information etc on children who have had corrective surgery so much later in life. Anyone????

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Laura - posted on 10/16/2012

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Hi I second that lambdoid is one of the rarest, especially if they have Mercedes Benz syndrome, all lambdoid whether single suture of bilateral or Mercedes needs a posterior augmentation, pls don't delay the surgery just because they "look normal" I made this mistake as I was young 19 at the time & couldn't except what I was been told as Chelsea looked so "normal" the delay in surgery left her with a building high inter-cranial pressure that has left irreversible scar tissue on the brain!! Luckily for us they got in there before the damage became serious, the lambdoid sutures flatten the head shape & crush or force out the cerebellum. (Chiari malformation)My advice is get a second opinion & if it justifies the first, go with the surgery. Hope I've helped :) let me know how it goes.

Laura :)

Janice - posted on 10/05/2012

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lambdoid synostosis is one of the rarest types and as far as I know can lead to other problems and is therefore always corrected. However, my daughter has metopic cranio so I do not know much about it.

Daphne I would strongly suggest going to craniokids.org. There are many extremely knowledgeable parents who can better advise you concerning lambdoid and surgery on an older child.

Daphne - posted on 10/03/2012

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H i Jamie /Janice,



My son also will be 3 yrs old coming Jan'13, He was diagnosed with lambdoid synostosis (

right side close). I am now also considering whether should let him go for the surgery to correct

this problem, He too has some facial asymmetry. The doctor mentioned that there is

not much high intercranial pressure at this point.

Pls help to advise what should i do................will the surgery has more complications after that?

He is such a lovable kid though ve and odd head shape. His development is ok,

much smarter than his older brother at his age,



Jamie,

wonder did u eventually had ur son go for the surgery?

Janice - posted on 04/18/2012

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I would second going to craniokids.org

All the families there are are amazingly supportive and knowledgeable.

Laura - posted on 04/09/2012

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A low lying cerebellum is also classified as a chiari malformation it can only be problematic depending on the size of the herniaton Chelsea's is 1cm below skull base so it blocked the flow of CSF (cerebral spinal fluid) . Hence she then developed high intercranial pressure so it had to be released while she was in theatre they remodelled her skull (posterior augmentation) for the craniostynosis it was for cosmetic and also to stop the CSF becoming blocked again. When they do the augmentation they cut from ear to ear in a zigzag shape across the top of the skull. I can give you more details on the operation if you like but I must warn you it's not pretty and you will prob feel better knowing the details after his operation as if I knew what I do now( from Chelsea's hospital notes) I would never sleep at night.

Chelsea had muscle weakness and held her head to the one side for comfort but the operation did release this tension. Her head is not as you would call " normal" shaped as they fixed her skull with many plates and screws one of these screws buckled leading to a closure of one of the sutures they repaired before its healing time so she developed a twist only slight but noticeable. I can give you my email address if you like, to keep in touch as there are not many mums out there with children like ours sometimes it's so frustrating to be alone.......

User - posted on 04/08/2012

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Sorry for so many posts, it is the cerebellum. So they same area where chiari malformation would occur. But again, even though its low lying they don't think it will cause problems.

User - posted on 04/08/2012

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Oh, and our son has no symptoms that would lead us to believe that he has chiari malformation and the doctors don't seem to think there is much chance of it developing. The only thing they did mention was that some part of his brain (that controls balance and maybe motor skills??) was a lot lower than normal in the base of his head. Again, they don't think this will cause him any problems.

User - posted on 04/08/2012

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We had an MRI and there is no pressure. But the doctors still want to do surgery. Would you go through the surgery knowing that there was no pressure? Did you see a big difference for your daughter? Did she have complications of any kind? We feel so at a loss because of how rare the condition is and how little information there is out there about it, especially for a child our son's age. I guess they primarily want to do the surgery so he can have a more normal head shape and not be made fun of. Our chiropractor says that his condition is limiting his range of neck movement and causing his muscles to tighten on the one side which can cause other problems over time. We have been taking our son to him since he was 6 months old and these issues are just developing now (muscles restriction). We feel afraid that if we go through the surgery it might help his neck movement but that he'll end up with an odd shaped head, and a big scar. Its hard to know how to make the best choice. Thanks for all of your help!

Laura - posted on 04/08/2012

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ICP is high intercranial pressure. My daughters ears were low set & also had a "cone shaped" skull. I doubt there would of been anything you would of done within pregnancy to cause your boys condition. My daughter had various genetic testing all of which were fruitless. Some children have unexplained craniostynosis. But with lambdoid in particular is a risk of chiari malformation especially if the craniostynosis is left untreated. it's worth asking of your sons percentages of developing the chiari malformation at your next craniostynosis clinic. My daughter has chiari malformation too. Which then opens up a whole new chapter..... I hope this helps :) Xx

User - posted on 04/07/2012

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Its only the back left suture. And its fused 3/4 of the way up, but because of it there is a large bump behind his ear and the "crown" of his head has grown pointy on top right. He was born with his ears uneven which leads us to believe this all happened while I was pregnant. Not sure what ICP is...?

Laura - posted on 04/07/2012

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Hi my daughter has bilateral lambdoid craniostynosis, surgically treated at 2 years old she is now 8. Our children's craniostynosis is the rarest. So there is not much information on the Internet. Does you little one have multi suture or single suture? Does he have raised ICP?

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