Questions for the Surgeons - Long List

Diagnosis & Recommended Treatment

1. What type of Craniosynostosis?
2. Would you consider it mild, moderate or severe?
3. Will you do a CT to confirm the diagnosis? Why or why not? Can we do an MRI instead?
4. Does craniosynostosis have any long term side effects (with or without surgery)?
5. What type of preoperative testing do you recommend? X-ray? CT Scan? 3D Scan? Lab tests?
6. Do we need to see a Geneticist? An Ophthalmologist? A Pediatric Dentist?
7. What type of procedure are you recommending? (Endo, CVR, FOA, Strip) Can you describe the procedure? If Endo, what is the risk with the Endoscopic surgery of not being able to see everything? Or making a cut that would cause bleeding and need to be repaired?
8. What is the best time (or age) to perform the surgery that has been recommended? How long can the operation be safely delayed, and what problems can happen if we delay?
9. What are the possible risks/complications if we choose not to have the surgery?
10. How many more appointments will we have between now and the surgery?

Surgeon Specifics

1. What number can I call if I leave your office now and have more questions?
2. How many cranio surgeries do you do in a week/year?
3. How many metopic cases have you done? Over how many years?
4. How long have you done these types of surgery as a team? How many per week/month/year?
5. Do you track your patients? How are they doing?
6. How many have needed additional surgery?

Hospital Stay

1. How long is the hospital stay?
2. Will Jesse be in intensive care?
3. If so, will he stay in intensive care for his entire stay?
4. Can my husband and I stay with him at the hospital?

General Surgery

1. Please explain all of the steps of the surgery ... what will you be doing?
2. How do you join the skull back together? Do you use plates and screws, or sutures?
3. What are the possible risks/complications of the surgery?
4. What is the chance Jesse will have to have a blood transfusion?
5. Can we donate blood for a direct transfusion? When / where do I donate blood for his transfusion?
6. Besides the operation that you propose, are other doctors doing different operations for my child’s condition? If so, what are they, and why do you not recommend these operations?
7. Will students, interns, residents and fellows be looking after my child? Can you define their roles in my child’s care?
8. What are the chances Jesse will have any development delays due to compression on his brain thus far or from surgery?

Pre-Surgery

1. Do you use/suggest Procrit injections to reduce the risk of needing a blood transfusion?
2. Will you shave his hair?
3. Where exactly will the incision be?
4. Will it be a straight line or a zig-zag?
5. What type of stitching will you use?
6. Is there a time he should not eat prior to surgery?

During surgery

1. How long does the surgery last?
2. What type of anesthesia will be used?
3. Do you get to personally choose the anesthesiologist who will care for my child, or do you work with a group of anesthesiologists that assigns you an anesthesiologist when you operate? Is the anesthesiologist a specialist in infants?
4. Is the brain ever touched during surgery?
5. Will both the NS and CFS be there during the entire surgery?

After surgery

1. How long (post-op) will it be until Jesse is coherent?
2. Will he have stitches that will have to be removed?
3. If the stitches are dissolvable, how long until they dissolve?
4. Will his head be bandaged post-op? If so, for how long?
5. What type of pain management will Jesse have? Any prescriptions?
6. How badly will his face and eyes be swollen and how long will it last?
7. Do you use drains? Why or why not?
8. Will he have black eyes or peeling eyelids from the swelling afterwards?
9. Will he most likely be nauseas after surgery?
10. How long does the nausea last and can he be given medication for it?

At Home & Beyond

1. What will be involved in the follow-up appointments? How often will they be?
2. Is there a chance of Jesse needing a second surgery and how will we know?
3. What kind of medicine will he need to take once he’s home?
4. How long will he be sore or need medicine once he’s home?
5. How long will we need to be incredibly cautious with his head?
6. What should we expect as far as eating/sleeping changes?
7. Should he sleep angled or on a pillow?
8. Can I pull clothes over his head? If not, how long should I wait?
9. How do we care for the incision?
10. When can we wash his hair?
11. Will my child wear a helmet after surgery?
12. When will we know if he needs a helmet?
13. What types of skin irritation occur from wearing the helmet and how do you prevent/treat them?
14. Do families purchase helmets for protection as opposed to shaping?
15. How long until we can notice a difference in his head shape?
16. Will there be lasting scars that can be seen?
17. Is there a risk of developmental delays after the surgery?
18. What is the chance of future neurological problems because of the surgery?
19. Will Jesse have any problems with his ears or eyes because of the surgery?