Shannon's Take - Finding A Doctor For Your Child

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Note: The views expressed below are solely those of the author. They do not represent the They do not represent the opinions of Conquer Pediatric Chiari (C&S Patient Education Foundation) or its employees. Ms. Schroeder is not a medical doctor and does not give medical advice. Anyone with a medical problem is strongly encouraged to seek professional medical care.

Over the past year I have had several opportunities to speak with many different families across the country that have had a loved one diagnosed with a Chiari Malformation. These opportunities have been truly priceless in my eyes, because I have learned so much from all the families that I have talked to. They have often been my sources of hope at times when I thought there was no hope to be found. The willingness to share themselves with me by telling me their stories and offering me small pieces of advice has truly touched my heart.

It did not take long for me to realize that the Chiari Community is very strong. Although many not familiar with Chiari would argue we are small in number we are definitely big in heart. Perhaps it is because what we go through is not well known about so we feel like we must stick together to make others more aware of Chiari. I’m truly not sure what the reason is but the patients and families that I have came in contact with are always eager to share their experiences and both good and bad. Whether the subject at the time is doctors, hospitals, tests or even medication the community will readily share their knowledge.

This is a great thing for those who have just been dealt the diagnosis of a Chiari Malformation for their child. It reassures us that we are not the only one’s suffering through this condition. However that being said we need to take everything we hear with a grain of salt. Just as every one of us reading this is a different person we will all have different experiences. Our conditions vary greatly and we all will respect different traits in doctors and hospitals. Some may prefer a doctor who gets straight to the point and puts things in black and white. Others may be more comfortable with a neurosurgeon that interacts warmly with our child and not only helps in the medical issues for our child but also looks after our children’s emotional needs and fears as well.

I believe it is only human nature really when we have a good experience with a doctor or hospital we want everyone to know. We want to spread the word in hopes that perhaps it will stop others from having poor experiences with other doctors. So we are eager to tell others all about what we liked or maybe did not like in the doctor or hospital. Fact is that when you search the internet you will see many well known names of doctors who have made themselves known in the Chiari field. Some because of the research articles that they have had published on Chiari Malformations and others because of the great outcomes they have had with their patients. Same with hospitals and institutes across the country many have great reputations for the services that they deliver. Every person is going to have a slightly different perspective on a doctor simply because we all look at things in a different way.

This is why I ask you to really listen with an open mind to others experiences and then put their opinions in the back of your mind. And begin to research the doctors in your area or who you feel could do the most good. There is more than just a handful of neurosurgeons that are capable of handling your Childs diagnosis. Find out who the local doctors are in your area and ask questions. Get a pediatricians recommendation remember they send children to neurosurgeons frequently. Remember you are in charge when it comes to your child’s healthcare. You have the right to get your questions answered. Don’t be afraid to ask how many Chiari patients they have had, what were their outcomes of their Chiari patients? If your child should become sick on a Sunday or a holiday what precautions do they have in place to make sure you can speak with a medical professional in case of an emergency. Remember when we purchase a car we are not afraid to go to two or three different dealerships. Why? Because we want the best deal and great service. So if we can do that when we purchase a vehicle, why would we not sit down with more than one doctor when it comes to our child's health?

Some other helpful things to look for might be:

Does the Specialist use language you can understand?
Does he willingly answer all questions openly?
Does he respect your values?
Are they board certified?
When discussing treatment

Some things you may want to ask would be:

What is the complication rate?
What is recovery like?
What are my Childs options when it comes to surgery?
What are his expectations for your child after surgery?
What are the limitations that they will put on your child?

There are many more questions to consider when interviewing a perspective surgeon. Take your time and look at any and all possible neurosurgeons. If need be don’t be afraid to travel perhaps your neurosurgeon may not work out of your city/state.

I wish you the best of luck in your search,

-- Shannon

Shannon Schroeder is a mother of two special needs children. Her youngest child was diagnosed with a Chiari Malformation in May of 2008. As such, she has experienced first hand the effects that Chiari can have not only a child, but the entire family. Shannon hopes to work with parents and children to help make this diagnosis a bit easier to understand, and to aid them in finding the help and support that they need. Shannon can be reached at: chiarichildren@yahoo.com