I AM A PATIENT

basics of chiari-related diseases:

FIND A PHYSICIAN

The founding CSF Board of Directors, Board of Trustees and Scientific Education & Advisory Board first discussed how to best serve patients and families at the first strategic planning meeting almost ten years ago. It was decided then that providing a list of specialists and surgeons is not in the patients’ best interest.  Instead, we give patients the tools to make good educated decisions about physicians in their area and around the country.

In order to help, CSF recommends 4 good options to get started:

1. EDUCATE YOURSELF FIRST.

Bobby Jones CSF has a lot of information on Chiari malformation (CM), syringomyelia (SM) and related disorders. There’s even information on other, more complicated situations like “Chiari 0”. You can find all this information under Physician Information.

But in terms of taking next steps towards treatment of CM and SM, patients and families should consult the CM/SM Patient Handbook for an overview on how to proceed. You can also watch this video about where to turn next after diagnosis. It’s a short video and really helps clear up the initial uncertainty.

2. FIND A BOARD-CERTIFIED DOCTOR NEAR YOU.

Physicians who are board-certified have to undergone an incredible amount of study and practice and are highly scrutinized by their peers. It is probably best for patients and patient advocates to locate doctors who are board-certified and nearest to the patient, geographically. This limits stress on the patient and his/her loved ones.

For a list of Board Certified Neurosurgeons in your area, visit the American Board of Neurological Surgery website.

For a list of Board Certified Pediatric Neurosurgeons in your area, visit the American Society of Pediatric Neurosurgeons website.

For a list of Board Certified Neurologists in your area, visit the American Academy of Neurology website.

For a list of Board Certified Pain Management Specialists in your area, visit the American Board of Pain Medicine website.

*Note: these doctors may or may not specialize in these disorders. It’s always best to call their offices and check!

3. CONSULT WITH MEDICAL EXPERTS.

The Bobby Jones Chiari & Syringomyelia Foundation Medical Board  (or “SEA Board”) is made up of physicians, scientists and experts in the field of CM, SM and related disorders. They have made themselves available for contact by patients and families who want to educate themselves more about potential treatments and outcomes.

You can also refer to the physicians and experts who have given lectures at CSF events in the past. Those physicians may not be on our SEA Board, but they are also well-versed in these conditions. You can find the full list of over three hundred CSF lectures here.

4.IF ALL ELSE FAILS, CONTACT US!

If you still have questions or concerns, we are only a phone call away at (718) 966-2593.  You’re not alone!

*Disclaimer: The Chiari & Syringomyelia Foundation does not recommend or refer to any specific physician or healthcare provider.  The physicians listed in search engine tools, may or may not specialize in Chiari, syringomyelia and/or related disorders. You should always find a doctor you trust!

 

Reviewed on 9/2019