Marcus right coronal cranio

[marcus's mommy]

Well his surgery is fastly approaching less than two months to go, and we are doing all the pre op stuff right now. He got his 3D CT done, and then we went to a pre op eye op. Where we were told that Marcus's head tilt may not be due to his craniosynostosis, but he might have nerve damage to his right eye, and it requires surgery to fix. I was devasated, I couldn't believe it, after he gets done with the big surgery then my boy has to have another one. I asked the opthalmologist, if this had anything to do with craniosynostosis, but he said no. Do any of your little ones have eyes issues, or nerve damage with a slight head tilt?

[Wyatt's Mom]

I'm sorry to hear you got news of another surgery. That sucks. I'll pray for Marcus.

My son did not have any eye problems, we were very lucky.

[Tawnia]

I am sorry you got this news while already facing another surgery. My daughter didn't have any eye/tilt issues but she is/was metopic.

[BusyBee]

My daughter was right coronal and she had a head tilt. We never saw an eye doctor but she did have some physical therapy as they said she had torticollis (weak muscle in the neck). We do have some concerns about her eyes and we will follow this up but she had surgery in November and ever since she holds her head MUCH straighter. It's amazing! I think that it had a lot to do with her eyes being so uneven. She was making an adjustment to her head to even out her eyesight. I asked the physical therapist if this could be the case and she didn't think so but how else do you explain that now she holds her head straight? The only change has been surgery! I would wait until after surgery and see how Marcus does. I have heard that there were other coronal babies who were better after surgery too. Good Luck with this. Marcus will be fine but the last few weeks before surgery were definitely the worst for me. I'll be thinking of you xx

[Jaysmom]

Jason had right coronal and had surgery in sept. He still has the head tilt. We are doing PT twice a week and seeing a Chiro. We went for our follow with the ps and she wants him to be evaluated for occular tort. We have been to the optamolgist in October and he said everything looked fine. We go back to optamolgy in Feb. so hopefully know more then.
When is the surgery?

[marcus's mommy]

thank you for everyone's input it really helps!! My little man's surgery will be on Feb 17th. For right we are just going take it one step at a time. We are going to get the big surgery and then we will follow up with the ophthalmologist and take it from there. Marcus has been getting physical therapy now for 2 months and will continue it for a while. We were very lucky to have in a day care that has therapist come in twice a week to work with the kids. I am starting to have alot more anxiety these days! I just hope that we et through this

[zacharys_mommy0820]

My son has left coronal and has a head tilt and eye issues as well. When he sleeps he does not close his left eye all the way which concerns me that there might be vision issues. I agree, I personally feel that that head tilt is due to the fact that he is trying to level out his uneven eyes to see straight. try it on yourself, I did, I pushed one eye down and then had to tilt my head to make what I was seeing go straight again. It is a simple explanation if you ask me...but i might be wrong. My son will see the nuerologist on the 3rd and is not even scheduled for surgery yet, but his eye issues are on the top of my list : )