KidQuest: Questions for Parents to Ask

Here are some basic questions for parents to ask before their child has surgery. I based these questions on the ones posted at WACMA website that are for adult patients. Once again, I turned to parents and asked them to contribute possible questions to ask. It is so important to be prepared as it will make you feel like you are helping to care for your child. That's one factor that will always be, no matter what the medical condition is, the feeling of hopelessness, of not being able to protect your child from sickness and pain. . I hope the following questions will be usefull in the pursuit of finding the best surgeon and the best care. If anyone has any other questions you'd like to see included, please send them. Have faith and educate yourself.

1. How knowledgeable is the doctor about the medical conditions? if any and all apply

Arnold Chiari Malformation Hydrocephalus Syringomyelia Tethered Cord

2. What tests will be ordered and what will they be looking for?

MRI - of head neck and spine CSF flow Study - to make sure that the spinal fluid flow is not obstructed It is suggested that ACM patients should refuse any type of spinal tap as it can cause the ACM to become symptomatic

3. Are the symptoms attributed to these medical conditions?

Symptoms very from person to person but many of the same symptoms can be attributed to all of the conditions listed above.

4. Are these conditions life long and will they require long term care?

It is a good idea to have a specialist to care for your child, one who has a lot of experience.

5. How many children has the neurosurgeon seen for the same conditions?

If the answer is no, then seek another doctor post haste. These conditions will need to be monitored during the entire lifetime even if the patient is asymptomatic.

6. How many children has the surgeon operated on?

It is very important that the surgeon is surgically qualified with more than a couple of these procedures in his experience.

7. What are the success rates?

Don't be afraid to ask this one question, your child's health and well being are involved.

8. What type of pain control will be used during the hospital stay and once the patient is released to go home?

This is one of the most important questions that need to be asked. Pain control is one step of the rehabilitation process. Be sure to ask for a perscription that can be filled after the patient goes home.

9. What happens if symptoms persist after surgery? Futher Tests? Other Medications?

If symptoms persist, they will need to be addressed. Make sure the doctor is in agreement to treat if symptoms persist. I would hate for any parent to find out afterwards that the doctor feels that since the surgery was a success then there is nothing more he can do.

10. Who do I need to take my child to see, if problems arise at a later date?

Sometimes symptoms can return at a later date, call and ask for an appointment and tell them asap. Most likely further testing will be done.

11. Are there any parents of post-op patients that we can speak to?

A parent can gain a great insight to the bed-side manners from other Parents who have already learned first hand.

12. What kind of limitations should there be for daily activities....ie...household chores?

At first, it is recommended that the patient get plenty of bed-rest and not to try to hurry up the process of healing. If they were to try to soon, it could do more harm than good.

13. Should contact sports be aoided as well as any high risk activities?

Children with or without syringmyelia (a cyst/syrinx) are much more likely to become symptomatic after an accident or trauma. A simple fall can make the child's symptoms progress so it is best to keep them out of harms way.

14. Should they wear soft collars while riding in a car?

It has been suggested by neuro's for adults to wear soft collars while riding in a car for protection in case of an accident. It will help to minimize neck injuries. I understand it may be difficult to get a child to wear one, but maybe for the first few times out, just for an ounce of prevention.

For the Child, Connie