Coronavirus Pandemic

COVID-19, Chiari, Syringomyelia and Related Disorders

The COVID-19 coronavirus pandemic might seem scary, but together, we will be prepared, safe and healthy.

This page will be frequently updated as the emergency response to this pandemic moves forward. Send us your questions to info@bobbyjonescsf.org and we will do our best to address them on this page!

Looking for things to keep yourself or your loved ones occupied while at home?

  • unite@home with us. Color our unite@night coloring and puzzle pages to keep the kids occupied… or just to relax yourself!
  • Join our Inspire community. Join our Bobby Jones CSF community on Inspire and interact with other patients and caregivers who are going through the same things. We can’t have support in-person, so let’s do it online!
  • Participate in research. More to come on this! Check back to this page next week to learn how you can use this time to advance research and find a cure!

 

FREQUENTLY ASKED QUESTIONS

  1. Will my/my loved one’s surgery for Chiari, syringomyelia or a related disorder be postponed?
  2. How likely am I or my loved one to become infected with COVID-19?
  3. Are people who recently had surgery for Chiari or a related disorder considered “immunocompromised”?
  4. How long will this go on for?
  5. What can I do to protect myself from being infected?
  6. I think I might be sick. What do I do now?
  7. I’m really scared for myself and the people I love. What do I do?
  8. Can I take anti-inflammatories/pain relievers/fever reducers?
  9. What is my neurosurgeon/neurologist doing to respond to the crisis?

1. Will my/my loved one’s surgery for Chiari, syringomyelia or a related disorder be postponed?

The answer may be yes or no depending on a couple of different factors… Is the surgery voluntary (“elective”)? How serious is the need for surgery? How much of an outbreak is there in the local area where the surgery would be taking place?

Depending on these factors, the answer to this question will be different for everyone. Below is a helpful guide, but guidelines may be different at your local clinic/hospital—the most important step is to call your care team.

If the surgery is elective and fairly routine…

If the surgery is voluntary and the symptoms it is seeking to are considered by the patient and the care team to be manageable for the time being, the surgery will likely be postponed.

Postponing surgery in this case would actually be a good thing, because the risk of infection with the COVID-19 virus will outweigh the benefits of surgical intervention.

If the surgery is elective and considered a “priority”….

If the surgery is considered elective but is addressing very troublesome and dangerous symptoms, it will be up to the patient, his or her family and the medical team to make a decision about the pros and cons of having that surgery.

Again, the most important point will be: does the risk of infection outweigh the benefits of the surgical intervention? This will require a very careful, meaningful discussion between the patient, his or her loved ones and the medical team that will be offering care.

Important: Some clinics have already put policies in place that would allow surgeries like these to proceed, unless there is a dangerous surge in COVID-19 cases at the clinic/hospital. At that point, the clinic/hospital may need to postpone this type of surgery as well, because the likelihood of infection will be significantly higher to patients and family members of patients with the types of chronic illnesses that would undergo this kind of surgery.

If the need for surgery is life-or-death…

If not having the surgery will be life-threatening (e.g., there is a dangerous amount of pressure in the brain that requires surgical release, etc.), then the surgery will happen.

The risk of death in this case, greatly outweighs the risk of infection with the COVID-19 virus. Usually, the need for this type of surgery will come on very quickly. This type of surgery will probably not have been scheduled beforehand.

2. How likely am I or my loved one to become infected with COVID-19?

People who are most at risk to COVID-19 are the elderly and individuals with chronic diseases. Individuals living with Chiari, syringomyelia and related disorders may, therefore, be at a higher risk than the general public (if they are immunosuppressed).

Currently, however, there is no reliable data on how much more likely infection is in patients with disorders like these.

So, for now, the most important thing to do is to reduce your exposure to the virus. Learn more about how to reduce the likelihood of infection.

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3. Are people who recently had surgery considered “immunocompromised”?

Neurosurgeon, Dr. John D. Heiss, at the National Institutes of Health says:

“Patients do not become immunosuppressed because of the Chiari I malformation.  A surgical procedure for Chiari I malformation and syringomyelia may cause minor reductions in immune function if 1) there is considerable blood loss that reduces the number of lymphocytes in the blood and/or 2) there is poor nutrition after surgery.  Corticosteroids, medications like dexamethasone (Decadron) and prednisone, can reduce immune function if they are used around the time of surgery, but their use is usually limited to a few days after surgery.  So, a person should not be immunosuppressed after a surgical procedure that has little blood loss, is followed by normal oral intake, and does not require immunosuppressive medications.[For example, a] 7 year old who underwent surgery 6 weeks ago should be recovered from surgery and have an immune system that functions as well as before surgery, unless there are other factors, such as the medications discussed above, that suppress the immune system.

After successful Chiari malformation surgery, the risk of serious respiratory illness may be lower because you can cough better because you don’t have cough headache.  Coughing helps clear bacteria and viruses out of the throat and lungs.

My advice is: 1 ) avoid picking up the virus in the air by keeping a safe distance (6 feet) away from other people in social settings, any of whom could harbor COVID-19 for up to 4 days before getting sick with it, 2) wash your hands often to avoid picking up COVID-19 from surfaces, and 3) keep your immune system in great shape to fight an infection by getting adequate exercise, sleep, and nutrition.  Seek medical care for possible COVID-19 infection if you develop symptoms of dry cough and fever; testing for COVID-19 is now fairly widely available.  Avoiding spreading COVID-19 to your family, friends, classmates, and co-workers by staying away from them if you feel sick (self-quarantine).

Stay calm, safe, and around your home.  COVID-19, like most things, will eventually pass and life will become normal again.”

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4. How long will this go on for?

The truth is: we don’t really know. Many people have claimed that this virus is similar to the flu and may go away as we enter the warmer months… but the truth is, we don’t know how this virus will grow or recede in severity over the coming months.

The CDC predicts that in the coming months, most of the U.S. population will be exposed to the virus… so the most important thing for us to do is to prevent that exposure…

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4. What can I do to prevent myself or my loved ones from being infected?

Know the symptoms.

Watching for symptom onset is critical… so being able to identify the most common symptoms is important.

Generally, symptoms include fever, coughing and difficulty breathing. Symptoms can be mild, moderate, or severe. Some mild symptoms can be difficult to identify.

Check the CDC’s website for more information on symptoms, how to identify emergency symptoms, and what to do in that case. (CDC resources: in English y en español.)

Wash your hands.

This is a real simple one, but a little soap and water can do wonders! Wash your hands with soap and water, frequently… more frequently than you think you should!

Be sure to wash for at least 20 seconds! And, yes, this feels like a long time… do it, though! Make sure to carefully scrub all parts of your hands… including your palms and backs of hands, your thumbs, sides of your hands, between your fingers and your fingertips. Some experts also recommend you wash up to your wrist.

A good scrubbing to each of these spots will ensure you’ll get your full 20 seconds in!

Don’t touch your face.

Also a simple one… but it’s easier to forget than you think! Make sure your well-washed hands do not touch your eyes, nose, or mouth. This reduces the likelihood of you breathing in/ingesting droplets that may contain the virus.

“Social distancing” and self-quarantine.

When you can, stay at home!

This one is very important for individuals with chronic illness. Limiting in-person contact with potentially infected persons greatly reduces the risk of infection. It might be uncomfortable for a little while, but you are absolutely better off being safe, than sorry!

Clean/disinfect “high-touch” surfaces.

This one is often overlooked… and it’s super important! Using cleaning agents to frequently clean and disinfect items in your home that people touch often will be very important to reduce viral spread.

Some surfaces and items that you should clean at least daily can include (but are not limited to):

  • Cell phones, tablets, computers (especially if this is how you’re keeping in touch with people during social distancing and/or self-quarantine!)
  • Doorknobs
  • Light switches
  • Refrigerator doors
  • Faucets & toilet handles
  • Furniture drawers
  • TV remotes
  • Etc.…

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5. I think I might be sick. What do I do now?

  1. This might sound counter-intuitive, but DO NOT immediately go to your doctor, urgent care or Emergency Room!
  2. Instead, call your doctor or local urgent care/ER.
  3. Tell them all your current symptoms and how long you remember having them.
  4. If you have a chronic illness, let them know. Individuals with chronic illnesses may be at higher risk for infection.
  5. When you are on the phone, the clinician will be able to tell you the most reasonable next steps.

It’s important to call ahead to reduce risk of exposure to the virus.. to you and to others!

Think about it: if you aren’t sick with COVID-19, then going to a doctor’s office, urgent care or emergency room where you are very likely to come into contact with the virus, is a bad idea. And if you are infected with COVID-19, then you run the risk of spreading it to others and potentially overwhelming that clinic or hospital with a surge in infections.

The CDC has excellent resources explaining what to do if you think you or someone you love might be sick.

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6. I’m really scared for myself and the people I love. What do I do?

It is completely reasonable to be nervous at times like this, especially if you or someone you love in chronically ill. You should remember, however, that mental health is health, too!

Coping with the stress that this pandemic causes is important to maintain a healthy body and immune system! Try to take the following steps

Stay informed.

Educate yourself about COVID-19 and its potential risks to you and your loved ones. Be aware of the symptoms and stay up-to-date on the news in your local area. Be sure to get your information only from trusted sources! If you have questions, contact your health care provider, or email us at info@bobbyjonescsf.org.

Take some time to disconnect.

This one is super important. We live in an amazing age where information is always available right at our fingertips… but the overwhelming information can make us feel very anxious and upset.

It is absolutely critical to take a step away from social media, the internet and the news when everything starts to feel a little dark and upsetting. Taking frequent breaks does not mean you are putting yourself at risks, it means you are prioritizing your mental health… and mental health is health!

Focus on your physical health.

A healthy body creates a healthy mind. Eat healthy, well-balanced meals and exercise however you may be physically able. Gyms may be closing, but you can exercise simply by going for a walk around your block or at a local park. Even something as simple as doing some light stretching in your home will help you take care of your body.

Try your hand at mindfulness.

Take deep breaths and try to clear your mind. We know… it can be hard to do and it might seem silly at first, but it will definitely help you ease your worries! An easy, calming exercise: breathe in for 4 seconds, hold that breath for 2 seconds, breathe out for 4 seconds and hold the breath out for 2 seconds. Then repeat as many times as necessary. Eyes can remain open or can be closed.

If stress becomes too overwhelming and gets in the way of daily life for at least one week, contact your doctor.

Check out the resources at CDC regarding stress and anxiety, including info on how to identify it in your children/yourself and what to do about it.

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7. Can I take anti-inflammatories/pain relievers/fever reducers?

This question is very important to patients living with chronic pain. So, let’s talk about it…

BACKGROUND:

A recent study in The Lancet hypothesized that because the COVID-19 virus infects cells using a specific cellular pathway, then it’s possible that anti-inflammatory medications like ibuprofen may increase likelihood of infection or worsening symptoms. Anti-inflammatory medications can up-regulate the cellular enzymes involved in the proposed viral infection method. Because of this, it might seem scientifically plausible that there could be risks there.

It had been previously reported that the World Health Organization (WHO) was recommending that people take paracetamol/acetaminophen instead of ibuprofen.

IMPORTANT: On March 18, 2020 the WHO stated outright that they are not recommending that people stop taking ibuprofen at this time.

(Image courtesy of World Health Organization)

TRANSLATION:

Essentially, it had been previously reported that people should take over-the-counter medications like Aspirin and Tylenol for pain and inflammation/fever, rather than ibuprofen (e.g., Advil, etc.). This was because what we currently know about the virus suggests that certain properties of ibuprofen may put people at greater risk…

There are two problems with this…

  1. The WHO has come out and stated that there is just not enough evidence at this time to make these claims. Remember, this is based on a very recent, non-clinical study, only. Multiple clinical studies, especially population-based studies will be required before this claim can be made. There are no long-term data available right now to know the real risks.
  2. Also, while taking aspirin rather than ibuprofen may be harmless for most people, some people can experience much more significant reactions to Aspirin and Tylenol. For example, Aspirin can be used as a blood thinner, which may lead to an increased likelihood of bleeds. This can be dangerous for some folks.

Ultimately, the hypothesis is just that right now: an educated guess.

BOTTOM LINE:

While there is some scientific basis to believe that anti-inflammatories may cause a problem with COVID-19, we just do not have enough information to say (for sure) whether or not people should switch from ibuprofen to paracetamol/acetaminophen.

Additionally, your individual reaction to both medications can be very personalized– there may be a specific reason why you should/should not take one over the other.

That is why you should check with your doctor or health care provider before you make ANY changes to your preferred choice of pain reliever/fever reducer. Understand your medical history and open a dialogue with the clinician who knows you best!

As of today, you can probably safely take either kind of drug. But if you feel more comfortable and less stressed taking paracetamol, you may… just check with your doctor, first, if this is new for you!

Oh, and one more thing… if you have any other required medications, DO NOT stop taking them or start taking new medications without consulting your physician!

 

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8. How is my neurosurgeon/neurologist responding to this crisis?

Most neurosurgeon(s) and clinic(s)/hospital(s) are responding to the crisis with their own set of rules. We will do our best to make the policies of the offices we know about available here (at least our SEA Board will provide updates). Please check back.

IN GENERAL

Most elective surgeries in the U.S. have been postponed until further notice. Many clinics have also switched to “virtual” consults for the time being.

Emergency surgery will continue at hospitals, if the matter is life-or-death.

 

CALIFORNIA

University of California Los Angeles (UCLA) | Los Angeles, CA

  • Virtual consults are recommended whenever possible via telemedicine
  • Clinics remain open, however, for now

MICHIGAN

University of Michigan | Ann Arbor, MI (and satellite hospitals)

  • All elective surgeries are cancelled/deferred for at least 2 weeks.
  • Patients with non-urgent clinical appointments can either:
    • Have an online, “virtual visit” via telemedicine
    • Reschedule appointment in 2 months (earlier if situation settles down sooner)
  • Urgent and emergent visits proceeding as usual (Emergency Room).

NEW YORK

Neurological Surgery, P.C. | Neurological Surgery, P.C. Policy Statement(s) | Long Island, New York | Dr. Paolo Bolognese, Neurosurgeon; Dr. Roger Kula, Neurologist

 

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More Q&A will be added over the coming days and weeks. Check back and send us your questions to info@bobbyjonescsf.org!

 

 

 

 

Published: 03/17/2020

Updated: 03/25/2020