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 would not only unintentionally recommend one capable physician over another in an unfair manner, but it may even endanger patients and families who would feel they needed to travel a great (and potentially unmanageable) distance in order to have a consultation or treatment.
Because of this, CSF has a strict policy to not recommend any one physician or specialist over another. However, CSF's founding members believed that helping patients and families find help would be of highest importance. In order to help, CSF recommends 4 good options to get started.
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.
3. CONSULT A PHYSICIAN CSF HAS WORKED WITH IN THE PAST
The CSF Scientific Education & Advisory 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 thee codnitions. You can find the full list of over two 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. We will answer any and all questions you have that we can. You're not alone.
The Chiari & Syringomyelia Foundation does not recommend or refer to any specific physician or healthcare provider.