Newly Diagnosed Patients

Newly Diagnosed Patients

Receiving a diagnosis of a complex neurological condition can feel overwhelming, but you’re not alone. Here, we provide clear information to help you understand what these conditions mean, what symptoms to expect, and the treatment options available. Our goal is to guide you through the early stages of your journey, empowering you with knowledge and resources to navigate the next steps in your care.

New Patient
FAQ

Questions for Your Next Appointment

Resources for
Doctors

Patient Frequently Asked Questions

After a new diagnosis, it’s normal to have many questions about what comes next. This section addresses common concerns about evaluation, monitoring, and treatment, offering straightforward answers to help you feel more informed and prepared as you move forward in your care.

Below are some frequently asked questions that may help address your concerns and guide you through the next steps.

  • Do I need to see a neurosurgeon?
    Yes. It is recommended that all persons diagnosed with Chiari malformation (CM) and/or syringomyelia (syrinx) consult with a neurosurgeon.

  • Wouldn’t a neurosurgeon automatically recommend an operation?
    No. Not all patients require surgical intervention, but a neurosurgeon is well qualified to determine whether it is indicated at this time.

  • Will I get worse if I don’t have surgery?
    Not necessarily. The natural history (what happens if nothing is done) is not well understood. Some patients will progress, others will remain stable, and a few may improve without intervention.

  • Will I need regular monitoring?
    Yes. Whether or not you receive treatment, MRIs may be recommended in the future depending on your individual situation. Always report any change in your condition to your physician. New or worsening symptoms may indicate disease progression.

  • Is surgery a cure?
    No. Surgery is a treatment, but not a cure. Some symptoms are more likely to improve with surgical treatment than others. Talk to your doctor before surgery about what he/she anticipates will improve with treatment.

  • Are there treatments other than surgery?
    Surgery is the only treatment for Chiari and syringomyelia, but many symptoms can be treated or controlled with medication or other therapies.

  • What if I don’t agree with the surgical opinion?
    Seek a second opinion. Surgeons often sub-specialize. Some treat more brain tumors, vascular disorders, and some have a special interest in Chiari and/or syringomyelia. Look for a surgeon who has treated a large number of cases or who has a special interest in your particular diagnosis.

  • Are these conditions fatal?
    Chiari malformation and syringomyelia are not typically considered fatal conditions. However, a Chiari malformation or a syrinx that extends into the brainstem (syringobulbia) can affect the breathing and swallowing centers. If these centers are severely affected, you can be at risk for serious complications.

Questions for Your Next Appointment with Your Chiari or Syringomyelia Specialist

Preparing in advance can help you get the most out of your physician’s visit. Before scheduling your
appointment, list and prioritize the issues you want to discuss, and mention all of them when booking so
enough time can be allotted. Bring an up-to-date list of medical conditions, medications with dosages,
and any vitamins or supplements you take. Keeping a brief health diary can also help identify patterns or
triggers related to symptoms. Download the ASAP pain journal template to get started tracking your symptoms.

Consider asking your physician the following questions during your next appointment. These questions
will help ensure that you have a clear understanding of your condition and the best course of action
moving forward.

Questions About Diagnosis

  1. What is the size of my cerebellar tonsillar herniation, and how does that impact my symptoms?
  2. Are there any signs of associated conditions like syringomyelia, hydrocephalus, EDS, or tethered
    cord syndrome? What tests should I complete to rule out the possibility of comorbidities?
  3. Could my symptoms be related to conditions other than CM/SM?

Questions About Treatment Options

  1. What are my treatment options, and which do you recommend based on my specific case?
  2. If surgery is recommended, what specific procedure would you perform, and why?
  3. What are the potential risks and benefits of surgery versus non-surgical management?
  4. If I don’t have surgery now, what are the potential risks of delaying treatment?
  5. Are there any non-surgical treatment options that could be effective for managing my
    symptoms?

Questions About Long-Term Management

  1. What follow-up care will I need, and how often should I be monitored?
  2. What signs or symptoms should I watch for that would require immediate medical attention?
  3. What lifestyle changes should I consider to manage my symptoms and improve my quality of life?

How Can My Doctors Learn More About Chiari and Syringomyelia?

The ASAP Patient Handbook provides a more extensive discussion of the diagnosis and treatment of CM/SM. For a brief discussion on neuroanatomy, pathophysiology, and treatment options, Dr. John Oro provides us with his article entitled, Chiari & Syringomyelia 101.

Chiari malformation and syringomyelia are specialized disorders in neurosurgery. ASAP’s mission is to raise awareness and advance understanding, leading to earlier recognition, more informed decision-making, and improved patient care.

If your primary care physician or another member of your healthcare team seeks to learn more about your condition or how it may interact with other diagnoses, this section is a helpful place to begin.

Download our Comprehensive Guide to Understanding Chiari Malformation & Syringomyelia, or request a hard copy to bring to your next appointment. This booklet offers a clear, clinician-friendly overview of symptoms, diagnostic considerations, and current treatment approaches. (A newly updated handbook is coming soon!)

The ASAP Patient Handbook provides a more in-depth discussion of diagnosis, management, and treatment options for CM/SM, with references to current research and clinical practice. For a concise introduction to neuroanatomy, pathophysiology, and treatment concepts, Dr. John Oro’s article, “Chiari & Syringomyelia 101,” is an excellent starting point for clinicians unfamiliar with these disorders.

Recommended videos for clinicians new to CM/SM include:  

The ASAP YouTube channel hosts an extensive library of recorded presentations from experts in Chiari malformation, syringomyelia, neurosurgery, pain management, genetics, rheumatology, and related specialties. These presentations highlight the latest research, evolving clinical perspectives, and real-world considerations for patient care.