Appointment with Dr. Cohen - CFS

We were finally able to get in to see the local surgeon here in San Diego, Dr. Cohen. We felt really good about him. The team here at Rady Children's definitely has more experience. The team at UCLA does about 1 craniosynostosis surgery every other week, whereas Dr. Cohen and his team do 2-3 per week. The team at Rady Children's have been working together for 12 years, so that's another plus. And it will definitely be easier to stay local and not worry about travel and staying in a hotel during Jesse's surgery and hospital stay. 

Diagnosis & Recommended Treatment

1. What type of Craniosynostosis? Metopic
2. Would you consider it mild, moderate or severe? Moderate
3. Will you do a CT to confirm the diagnosis? CT will be used for aiding in surgery and to check for any internal pressure
4. What type of procedure are you recommending? (Endo, CVR, FOA, Strip) Can you describe the procedure? He's too old for endo, so they would need to do an open CVR/FOA. This involves removing the forehead bone and the upper orbits of the eyes. The would reconstruct the forehead and create a brow bone.
5. 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? 6-9 months. Can go as long as 12 months.
6. What are the possible risks/complications if we choose not to have the surgery? Pressure on the brain which could cause developmental delays. Some children with metopic cranio have language and speech delays whether or not they have surgery.

Surgeon Specifics

1. What number can I call if I leave your office now and have more questions? They gave me phone numbers.
2. How many cranio surgeries do you do in a week/year? More than 100 per year. 2-3 a week. The team has been together for 12 years.

Hospital Stay

1. Will Jesse be in intensive care? No. They haven't put the children into PICU since 1993. They feel all the monitoring and alarms create a stressful environment.

General Surgery

1. How do you join the skull back together? Do you use plates and screws, or sutures? Resorbable plates and screws
2. What are the possible risks/complications of the surgery?
3. Can we donate blood for a direct transfusion? Yes. But it is almost safer to go with blood bank blood. (I need to ask more about this. Didn't go into great detail.

Pre-Surgery

1. Will it be a straight line or a zig-zag? Zig-zag.

During Surgery

1. Is the anesthesiologist a specialist in infants? Yes, pediatric anesthesiologist. All the anesthesiologist at Rady Children's are pediatric. 

We should get a surgery date within the next couple weeks. Dr. Cohen did say they will try to get Jesse into surgery ASAP as we would feel more comfortable getting him in at around 6-7 months based on the recommendations of UCLA and some other surgeons. Dr. Cohen didn't seem to think it mattered too much and said they haven't seen any difference in the amount of second surgeries needed whether the surgery was done at 6 months or at 9-12 months.