Multiple Suture Synostosis

amother

Wed, Dec 13 2023, 2:28 pm

This will be a long post, just a heads up.

My baby is 3 months old. She was born with a super weird head shape that is not getting better. At her exam at 2 months her doctor referred me to Dr Souwdaine (not sure I got the spelling right), who’s supposed to be The Neurosurgeon in NY.

He confirmed that her head shape is consistent with that of multiple suture synostosis but ordered a CT to make sure. After the scan he said that based on his experience she did not need any surgery.

All good, but my baby’s pediatrician saw the scan too and said that the scan clearly shows that all of her sutures are closed, which would require immediate surgery. He called the neurosurgeon and was told that they’re aware of how the scans look and it’s all good.

Now I’m at a loss. My baby’s pediatrician has decades of experience dealing with newborns. I trust him. If he tells me that something looks wrong I would believe him, especially since he said that in all his years of working any such results were followed by immediate surgery.
Otoh the neurosurgeon is supposed to be top and it feels stupid to go for a second opinion.

But I know that if she does have multiple suture Synostosis it will start restricting her brain growth in a couple of months if I don’t take care of it

What to do????

esther11

Wed, Dec 13 2023, 2:30 pm

I would go for another opinion. Hatzlacha!!

amother

Wed, Dec 13 2023, 2:31 pm

esther11 wrote:

I would go for another opinion. Hatzlacha!!

Who do I call to find out about other neurosurgeons?

amother

Honeydew

Wed, Dec 13 2023, 2:31 pm

It's never stupid to go for a second, third, or even fourth opinion. You're the mama bear.

amother

Honeydew

Wed, Dec 13 2023, 2:31 pm

amother OP wrote:

Who do I call to find out about other neurosurgeons?

Ask your pediatrician for another referral.

amother

Wed, Dec 13 2023, 2:31 pm

amother Honeydew wrote:

It's never stupid to go for a second, third, or even fourth opinion. You're the mama bear.

Thank you ❤️

Rabbit613

Wed, Dec 13 2023, 2:33 pm

I would definitely go for another opinion. It doesn't sound like something that you want to mess up.

amother

Currant

Wed, Dec 13 2023, 2:42 pm

I would call one of the medical referral agencies chaim medical, refuah, shuki berman, or bikur cholim. I would also try and network to see if there is someone who has been through similar who you can talk to about it, maybe yahalom can connect you with someone. There are probably also Facebook groups on it but I'm not very savvy with that.
But definitely another opinion. If they agree with the first surgeon then great, if they agree with your pediatrician then you can even go for a third opinion. It's a big decision and not one to make lightly.
Hashem should send you clarity on what to do with the right shaliach. Iyh Your daughter should be healthy and develop beautifully without any concerns!! She is lucky to have a mother like you who is reaching out and working to do what is best for her!

amother

Wed, Dec 13 2023, 5:18 pm

amother Currant wrote:

Thank you!

amother

Dimgray

Thu, Dec 14 2023, 12:43 am

As a mother who has a child that as a baby had 1 suture closed- I’ll chime in here-
Please go for another opinion asap -
If your baby needs surgery there is an edoscopic option which is less invasive…
It’s not always an option but if it is an option for your situation it does have to be done by a certain time (few months old don’t remember exactly how many)
Also the brain growth restriction is a real concern.
I used NYU - Dr Staffenberg (a plastic surgeon) for the surgery - Dr Wissof was the neurosurgeon and he attended as well.

Hatzlacha!!!!!

amother

Emerald

Thu, Dec 14 2023, 5:53 am

I used Dr. Michael Tobias in westchester. Don’t remember who recommended him but he was good.

happyone

Thu, Dec 14 2023, 7:56 am

Refuah helpline 845-782-2000
Chaim medical 845-492-4917
Either of these would be happy to help you get a second opinion .