40 Questions to ask your doctors about Craniosynostosis.

Several fellow cranio parents have asked me what questions we asked during our consult for a 2^nd opinion (we also had a 3rd opinion via email) so I’ve compiled my list. When Ezra was diagnosed I started doing a TON of research and talking to other moms to gather as much information as possible on my sons diagnoses. I wanted the doctors to know I was not going to just take what they said as true but that I was actually an intelligent mom who was going to advocate for my son. I wanted them to know I was hiring them and this was their interview for the job. I had one of the doctors we spoke to tell me that I probably knew more about the diagnosis then their med students did (which was both terrifying and flattering) but that is exactly what I wanted my doctors to know! Knowledge is power! So here is my list…

1. Describe to me the kind of craniosynstosis you think my child has.
2. What symptoms lead you to believe this is the correct diagnosis.
3. Is my child currently in pain or having side effects of this diagnosis?
4. I’ve read several different opinions on best age for the surgery. What is your opinion on optimal age and your reason for choosing that age?
5. If we wait till he is older to do surgery will the surgery be more successful and/or less risky?
6. What is your rate of a 2^nd surgery being needed? If one is needed what would it be for?
7. Why do you suggest a CT scan? What specifically are you looking for? Is this necessary exposure to radiation? (I spoke to 3 doctors and only 1 of them asked for a CT and couldn’t give me a good reason why it was necessary so we never did one, I find this question to be one of the most important as I have had several surgeons tell me not to do the CT Scan)
8. Do you use the cell renewal machine to lower chance of blood transfusion?
9. If my child needs a blood transfusion do you use parental blood?
10. What problems may occur if we delay surgery or opt out of having surgery?
11. What is the risk of pressure on the brain and what kind of damage can that cause?
12. Besides the operation you are recommending are there other doctors doing this procedure differently then you? If so, why do you recommend it this way? (Endo, CVR, FOA?)
13. Do you work with the same team of anesthesiologists and OR nurses daily?
14. If this is a teaching hospital, define the roles of the interns and residents during surgery and post op?
15. Besides you, who are the other top 2-3 surgeons in this field treating my condition?
16. Is this only a cosmetically necessary operation or is it medically necessary?
17. How long have you been performing this surgery?
18. How many of this specific cases do you treat a year?
19. Can you show me successful photos of your work for this specific surgery?
20. Is the team specifically a cranio facial team or do you operate on other parts of the body?
21. What is the role of the neurosurgeon?
22. What is the role of the plastic surgeron?
23. Are there other specialists we need to see such as en ENT or ophthalmologist? If so when (pre surgery, post or both?)
24. What pain meds will you administer after surgery?
25. What medicines will you administer pre surgery (ask specifically about medicines for blood count)?
26. How long will we the surgery last?
27. What is the length of stay in the hospital?
28. Do you use a drain?
29. Tell me specifically your technique in surgery. Do you use bone grafting, artificial bone, plates, screws etc?
30. Explain to me step by step what the surgery entails.
31. How long have you used this technique and why do you think it is the best?
32. Explain to me the difference between FOA and CVR?
33. Do you plan on using a straight line incision or a zig zag?
34. Will you shave their head?
35. What does follow up care look like?
36. What are the long term symptoms or problems that are associated with craniosynostosis treated and untreated?
37. What is your hospital risk rate of infection?
38. What other risks does the surgery pose and what is your rate of those risks occurring?
39. If we travel on a plane to your facility how long until we can travel back? Is a plane ride post surgery risky?
40. Can I have your email address in case I have more concerns or questions in the future?

I would encourage you to do research on your child’s specific diagnosis (metopic, sagittal, lamboid, cornial etc.) and tailor the questions to that diagnosis. All of these questions were designed to answer questions for my son who was diagnosed at 6 months with Metopic Craniosynostosis. I would think if your child is younger or older there might be other questions to ask. We were told surgery would be scheduled before he was 9 months by one surgeon and another told us they would prefer to wait till he was closer to 10-11 months. If your child is a newborn you may have more options with the endoscopic surgery and I would encourage you to ask questions about that procedure in comparison to waiting and doing a CVR. There are no 2 cases a like and the questions and information I gathered ultimately helped my family and son have peace about the surgery but I don’t claim this to be an exhaustive list. I hope these questions get you thinking and help you to make an informed decision for your child. If I learned anything during the last few months, its that I am my child’s best advocate and I may not be a doctor but I have a God given Mom gut that I have to listen to. If something doesn’t sound right or causes you nervousness, get a 2^nd opinion and ask lots of questions until you feel comfortable. Being educated on your child’s diagnosis and the options only gives you power to advocate for him or her!

My prayers are with you and all the cranio families navigating this challenging journey! Remember, you are all cranio warriors and God has you children in the palm of their hands!