Deciding on 2nd surgery

[Liam's mom]

Liam had endoscopic surgery for bicoronal about 8 months ago and has been in helmet therapy since. We had a visit with the surgeon yesterday and he was concerned about a sunken in spot above Liam's right brow. He thinks continuing helmet therapy MAY fix the issue, but if not, we need to consider a 2nd surgery, which would just be cosmetic.

Has anyone else experienced this? We are hoping the helmet will correct the forehead, but a decision has to be made in the next couple months before Liam gets too old. Is it worth it putting him through extensive surgery to fix a cosmetic issue? I don't want him to be made fun of, but we all have differences that make us unique, right?

[Tawnia]

Thats a hard one...it would depend on the size and how noticeable it is for me.

[dannlark]

I agree, it would depend on the size and how noticable it is. Is it a bone issue (open spot)? I always think ahead 10-15 years and if I feel like if it's going to have an affect on self esteem in the future, then I think I'd want the problem corrected when they are still too young to remember it. What kind of surgery are they talking about?

[Haydens_Mommy1122]

Looks like Liam is following in Haydens footsteps.....Haydens 2nd surgery was for "cosmetic" purposes as well since the endoscopic surgery he had when he was 3 weeks old released the suture.....I sent you a message with more info!! :)

[Max's Mommy]

I just want to say Max had a bone graft (second surgery) - it was recommended by both the NSG and the PS but if I were to let myself think about cosmetics, it was the primary issue. Max's original bone graft reabsorbed too quickly leaving large welts above his eye and on the top of his skull. I also considered safety of his left eye a concern (but that was me not the docs). SO was it cosmetic...yup! Would I do it again....if the need was there... yes.

Amy

[Annie]

Oh dear, so sorry to hear, you've gotten some great advice...keep us posted

[Layla'smomE]

I agree that it depends on the severity, but keep in mind when these doctors throw around this term "cosmetic" that isn't necessarily how it should be taken either. Just keep this in mind: the brow bone has a function. If the brow bone does not protrude far enough over the eye, is cannot function properly. Meaning, the reason your brow bone extends past your eye socket is in order to protect it. If your little Darling's brow sticks out far enough to offer some protection, then I would say: probably not worth it (in my opinion of course. . . .which means nothing, really) but if it looks like the brow is sunken in to the point that that area of the face is all on the same plane: I think that the whole "cosmetic" term should be thrown out the window.
I sure hope this helps & best of luck to you. I know it isn't an easy decision either way.

[dannlark]

Kristen, I couldn't agree with you more. That was one of the determining factors for Ian's surgery. His brow bown was so pinched in that it left little protection to his eyes. At that point, IT'S NOT COSMETIC!

The original post was from a while ago...

Liam's Mom...any update on your decision?

[zacharys_mommy0820]

I dont think this should be a hard decision. This is my reasoning, the reason that most of us noticed the cranio in the first place was because of "cosmetic" issues...facially there was something wrong with their school that made them abnormal from the rest and we wanted fixed. Then we found out it was cranio and we had surgery...and while surgery was scary it did not keep us from feeling relieved that are child's face would look normal again.
So my recomendation is this, if the helmet cant fix it then I would have the surgery. Think about your child when they are 18 and able to make their own decisions...will they take issue with this abnormality, or unique difference, and opt to have a surgery then that they will actually remember, cause if so...why not just do it now...chances are they will never remember...but the lasting effects of being different from their peers will be something they never forget.

[Liam's mom]

We are going to go through with the 2nd surgery. We don't want to have any regrets as he gets older and Liam is still young enough that he won't remember a thing. It's still hard to put him through another surgery, but once this is done, it should be the end of this crazy journey. I wanted to thank everyone for posting. I'll let you know when we schedule a date.

[Zara's mum]

Hi, just wanted to add my thoughts, for what they are worth! I think you have made the right decision in having the 2nd surgery. Like the other girls said.. it's "cosmetic reasons" that made all of us realise something was wrong with our little ones. the problem with society today is that sometimes if you look "different" then you aren't accepted. kids can be so cruel, if it can be fixed... then yup get it done!! best of luck with the second surgery, let us know when you know anything xx

[zacharys_mommy0820]

I think you are making the right decision. Although noone can tell you what the right decision for you is we can tell you what would be the right decision for us. Zachary has still not had his first surgery yet, and in the back of my mind I think maybe I can just do nothing because surgery scares me to death...but I know in my gut that that is not the best decision for him...while I would rest easier he would most likely suffer. If not from the possible vision problems, hearing loss, or developmental delays, then from the abnormality of his face and the other kids around him. It may not seem fair that society is forcing you into giving him another surgery, but I would not look at it that way either. Your sons self esteem, regardless, would suffer if he noticed he was different. I do think you are making the right decision if the helmet is not helping...let us know how everything goes.
Also, and i wanted to point this out incase you wanted to read it, there is a kid named Zachary who is like 16, he had bicronal and for some reason in his surgery only one side was fixed or it refused...if you google coronal craniosynostosis zachary it should pull it up...I can try and find the link as well. But this boy has a blog and that could probably give you some more insight as to why a 2nd surgery would be beneficial.

[Liam's mom]

We've scheduled Liam's 2nd surgery for Feb 24th. Thanks for all the encouragement, it really helped in making this decision. I'm relieved that the end is finally in sight.

[Grace'smommy]

Good luck to you, thinking positive and saying prayers for Liam and your family.Sometimes doing the right thing is not always an easy thing to do.Again best of luck.

[dannlark]

Glad to hear that the surgery is sooner rather than later. I know how hard it was to make the decision, but know that some day your son will be old enough to thank you. Lots of prayers coming your way. Stay strong, Momma, you're doing a great job advocating for him. ((HUGS))

[Maddy's Mom]

Just wanted to wish you lots of luck tomorrow!

[Avery's Mom]

Our NS also mentioned a second srugery for Avery yesterday, for the exact same reason, next to his left eye. If done it would be 8 weeks or so after the first surgery has healed......