Question for lambdoid moms

[lifesrealities]

Hey all, I haven't been on here very regularly, except some lurking in the background occasionally, lol. But got some questions hoping some post-op lambdoid mommies can help me with.My daughter Malia is 8mths post-op from CVR surgery to treat lambdoid. She is doing great but I am wondering was the mastoid lump still noticable afterwards? It looks and feels as though Malia's has gotten larger. I know the dr's said they did not go close to that area during surgery because it is to risky. Was that the case for you as well? Also curious, do you feel your childs head shape changed all that much directly after surgery or did it take a fair bit of time? Initially after surgery I felt my daughters shape had not changed at all, she did have 5mths of helmet therapy afterwards, and I do feel it had improved some but not as much as I hoped. The drs do tell me though that I can expect to see improvement until she is 5 yrs. Oh and she is now 14mths and her soft spot is still noticeably open, and actually sunken in. At her last appoint in december they tell me this is normal for the type of surgery she had. Would you agree?Thanks, Tamara

[maztec]

I am a lambdoid dad, not a mom, so am unsure if I am qualified to answer. However, my daughter just had endoscopic assisted surgery. Immediately after her head had changed dramatically and within weeks of helmet therapy the changes are so large that people are commenting on it. From talking to a few other people, this seems to be a feature of endo lambdoid's, and the CVR is very different.

That said, I can answer one of your questions, as I had asked our surgeon about it. The mastoid lump can get bigger and often does. However, is it not considered a problem, unless it can easily be seen from the front or there are ICP issues. Surgery of all types rarely make a difference to the mastoid lump. However, the head growing can make a difference. And, helmet therapy can basically do nothing about it - although, our orthotist modeled our helmet to try as it shouldn't hurt any.

[lifesrealities]

Thank you for your response maztec! My apologies for not acknowledging that there are also the daddies on here who come to share experiences, and seek and offer help. Tamara

[*Jessica*]

Hey Tamara! I am not a Lambdoid mommy, but sounds like maztec has already been a big help! I would also suggest sending an email to your surgeon...just to be sure that they are still ok with the developments.

[Graces408]

Im a Lambdoid mom. I think my sons head changed alot after surgery, however it still isn't perfect. He didn't have his surgery till he was 3 so it made it extremely hard to make fix all the Malformation. He was also too old for helmet therapy to be affective.If you look at him in the mirror, I think his head still looks really crooked but everyone else says it looks good. lol. Maybe being a mom/dad makes it harder cause we look at them every day and can pick out all the lumps and bumps and differences. We are 3 months post op and Austins bump on his mastoid is still there. You cant see it but I can feel it. I too was wondering how long it would be there.

[JessicaGarza]

My daughter is Lambdoid (right). We did the CVR surgery at 4 months old and are two months into helmet therapy. Her deformaty was really severe pre surgery, so post surgery was drastically better. That being said its still not normal. Looking at her its noticeable that there is/ was something wrong with her head. In my opinion the helmet has not helped one bit. My daughters soft spot is almost non-exsistant. Shes also got torticollis, and a tilt to the right which makes everything look worse. Shes almost 9 months old- so we still have time for everything to improve, but I don't have much hope that her head every be completely normal. Reguardless I'm just thankful her condition was able to be corrected and she did so well with everything shes been through at such a young age! These babies are troopers :)

[maztec]

We are helmet free now. Deformity was minor at the beginning. The surgeons were shocked by the progress, the mastoid bulge is basically gone. It looks amazing. On the other hand, her ears are crooked. Then again, most peoples ears are crooked if you look closely.

[SimonSays]

Although the last answers are a few months old - I thought I'd just introduce myself since I'm also a lambdoid mom and there are many of us on this thread! My son had lambdoid surgery at a week short of his 8 months of age. They only opened the suture and then he did helmet therapy for 3 months. Head look great right afterwards perhaps also in part thanks to baby fat making his face look round. Now at 19 months, I have found his head looks just the same as pre-op except for the less flat spot where the lambdoid suture was closed! He also has a torticollis but it seems this is not muscular but musculoskelettal since the head basically developed this way (the endocranial base) on an angled axis! We're continually tending to this slight deviation with physio and osteopathy (which gives great results by the way) but I am consulting again with another team of surgeons to see what can be done. We looking at CVR surgery to reshape the posterior cranial vault... wish me luck.

In my son's case, there was no mastoid but it does look like he has a 'bump' on the side of his head. It's just the way the bones have shaped from the initial fused suture!

[Proud mummy]

Hi im a bilateral lambdoid momma. First of all is your little one single suture of bilateral fusion?If your bilateral then I sorry but it's surgery as the helmet will have no effect at all. Chelsea still has the mastoid lumps along with the mushroom style top of the head, we haven't opt'd for the cosmetic surgery as I believe that's her choice when she is older. With bilateral lambdoid you need to watch carefully as your munchkin is at risk of high Intercranial pressure that comes on very quickly. A chiari malformation & a thethered cord unfortunately my princess is now 8 and has all 3 plus many more non direct conditions... & so far has gone under the knife 3 times for augmentation corrective surgery...If it's single suture it usually only requires one corrective surgery. But I'm no expert on single suture. I hope this helps a little bit :) Laura. X

[maztec]

I believe most of us are single suture. There have only been a couple bi parents on the forum.