Coronavirus Pandemic

COVID-19, Chiari, Syringomyelia and Related Disorders

The COVID-19 coronavirus pandemic may seem scary, but together, we can be prepared, safe and healthy. This page will be updated as the response moves forward. Send your questions to info@bobbyjonescsf.org and we will do our best to address them!

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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 “immuno-compromised”?
  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. How do I protect my and my loved ones’ mental health?
  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 or other factors, the answer to this question may be different. 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 may be postponed.

As of May 28, 2020: Some institutions around the country are expecting to get back to elective surgeries relatively soon. In these areas, outbreaks of COVID-19 have either been low, or are on the decline. It is likely that Chiari surgeries may resume soon in these areas, but timelines will be different from place to place. Check with your care team/neurosurgeon to see if your area fits into this category.

In other areas, however, things may be slower to open up. For instance, New York City is slowly seeing a decline in new hospitalizations, but it will be a while until it gets back to business as usual. In these areas still managing the pandemic, postponing surgery is still a good move for these “elective” surgeries. This is because the risk of infection with the COVID-19 virus may outweigh the benefits of having the surgery.

If the surgery is elective, but 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 having the surgery? This requires a careful, meaningful discussion between the patient, their 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 can be life-threatening (e.g., there is a dangerous amount of pressure in the brain that requires surgical release, etc.), then the surgery will still happen.

The risks to the patient in this case, greatly outweigh the risk of infection with COVID-19. 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?

As of May 28, 2020: Since learning about this new virus, new information is constantly being learned about COVID-19, how it affects the body and who is most at-risk.

The CDC lists the following people as being at increased risk for infection and complications:

  • Elderly people (65+ years old)
  • People living in congregated facilities
    • Special consideration for those living in nursing homes
  • People with underlying medical conditions (especially if not controlled)
    • These conditions may include:
      • Prolonged usage of corticosteroids and other immune-weakening medications
      • Smokers
      • Recipients of bone marrow/organ transplants
      • Genetic immune deficiencies
      • Poorly controlled HIV/AIDS
      • BMI of 40+
      • Diabetes
      • Chronic kidney disease undergoing dialysis
      • Liver disease

Currently, there is no specific data on infection rates specifically in patients with Chiari, syringomyelia or related disorders.

There is also no specific information about COVID-19 and individuals who have implantable devices, but there is some concern for this group.

“The overlaps that I see in patients [with Chiari] and [patients] who may be susceptible [to COVID-19 include] immuno-compromised [patients] who might have issues with some of these overlapping things like mast cell disorder, patients who are on chronic steroids, patients who are on chronic medications for idiopathic intracranial hypertension (IIH), patients who have implantable devices. I think we sometimes underestimate how fragile some of you may be–  we, meaning the medical community– and I think it’s both been challenging to figure out how to take care of you, but also reassuring to know that we have all these options and alternatives with video consultation.”

Dr. Jeffrey P. Greenfield, during a virtual Q&A session on May 21, 2020

For now, the best thing to do is to reduce the likelihood of being exposed 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.”

Dr. John D. Heiss, statement on Chiari, syringomyelia, immune suppression and COVID-19 from March 2020

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4. How long will this go on for?

The truth is: we don’t really know. When a new virus becomes a pandemic, it usually follows a specific set of intervals. The arc of a pandemic generally goes through the following phases: investigation, recognition, initiation, acceleration, deceleration and preparation (in case there is a “next time”!).

As of May 28, 2020: The U.S. is still in the acceleration phase, but some smaller regions or areas are starting to enter deceleration. With that, some areas in the U.S. are starting to open up, with careful restrictions put in place.

Some have claimed that this virus may go away as we enter these warmer months… but because it’s so new, we just don’t know very much about this virus or how it may behave… So, even infectious disease experts don’t know when this might end.

For now, it is best to follow CDC guidance on how to stay safe and prevent exposure.

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

1. Know the symptoms.

Watching for symptoms is key… so it’s important to be able to identify what they are. Again, since we are still learning about this virus, this list has been expanded since our last update!

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

Common symptoms of COVID-19 infections:

  • Fever or chills
  • Cough
  • Shortness of breath, difficulty breathing
  • Fatigue
  • Muscle or body aches
  • Headache
  • Loss of taste or smell (that is new!)
  • Sore throat
  • Congestion, runny nose
  • Nausea and vomiting
  • Diarrhea

Chiari and related disorder patients and caregivers are smart. You might look at this list and see a lot of overlapping symptoms to Chiari, syringomyelia, brainstem compression and related disorders: headache, shortness of breath/difficulty breathing, fatigue, nausea and vomiting… This can be tricky for us to navigate. That is why it is important to notice if you are experiencing new or worsening symptoms and if so, call your doctor immediately.

Emergency symptoms of COVID-19 can be tricky, too. Seek emergency medical care immediately if you or someone you love is experiencing*:

  • Difficulty breathing
    • May overlap with symptoms of brainstem compression, consider difficulty breathing that you are not used to, or that feels new or scary. Call your physician if something feels wrong.
  • Pain or pressure in chest that does not go away
  • New confusion
    • May overlap with possible symptoms of Chiari, brainstem compression, etc.. Consider new and profound confusion you have not experienced before. Call your physician if something feels wrong.
  • Inability to wake or stay awake
    • May overlap with fatigue issues, call your physician if something feels wrong.
  • Blue lips or face (lack of oxygen)

* – This is not a full list of emergency symptoms. Call your physician if you or someone you love is having other symptoms that are severe or that is scaring you.

If you can, call ahead or have a loved one call ahead to the emergency facility to let them know you are coming!

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.)

2. Wear a face covering.

There was some confusing information about this when the pandemic started, but the general consensus among scientists right now is that wearing a face covering (or mask if you have one) is a good way to prevent spreading the virus to others.

There is not much research on whether or not cloth masks provide protection, but one of the only studies ever done on the usefulness of cloth masks suggests that they are better than no protection at all.

You can even turn them into fashion statements or awareness pieces! Anyone participating in our virtual unite@home can earn you (or whoever you send out to the store for you!) a purple bandana that you can make into a mask.

IMPORTANT: Face coverings are not a a replacement for physical (social) distancing– stay 6-feet apart from people outside your home!

3. 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! Here’s a great resource on handwashing.

4. 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.

This is especially important in high-pollen, allergy season!

5. 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.…

6. “Physical 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.

Consider having them delivered or asking a caregiver, loved one, friend, or neighbor to pick them up for you. And if you’re ordering from Amazon for yourself (or for a friend who may be struggling), consider doubling up your good work and deeds by shopping on AmazonSmile to support our work as we transition to more virtual educational programs and continue our research efforts.

Stay 6 feet apart from others and follow all the above instructions! Having someone around to run errands is not a luxury everyone may have. In some cases, you may have to head out yourself.

Staying 6-feet (or about 2 meters) away from the next person when out in public while wearing a face covering will help reduce your risk of infection. Just don’t forget to come home and wash those hands thoroughly!

Self-quarantine if you have been exposed to someone or you yourself test positive for COVID-19. If you have been tested or someone you have been in direct contact with has been tested for COVID-19 and the test was positive, you should stay in your home for 14 days. Connect with loved ones online to stay social

 

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

If you/someone you love is having emergency symptoms (related to COVID-19, or Chiari, syringomyelia or a related disorder)…

  1. Seek immediate emergency care in a hospital/emergency room!

Most areas have been able to get the hospitalization rates under control and you do not need to be afraid of going to the hospital in an emergency situation.

Dr. Greenfield addressed this in our first virtual educational program on May 21, 2020:

“I know there’s been a lot of concern about what the hospitals are like– and what does it mean to go into the hospital? … I’ve been completely reassured and comforted being in the hospital and in the operating rooms the last few weeks. Particularly the children’s hospital– there is no more coronavirus, or COVID and some of the post-infectious issues that you might’ve heard about in the news are all in patients who had had infections weeks or months ago and are not infectious anymore. And they’re all doing quite well. The ORs are operating fairly normally. It feels like a normal hospital– it’s just a little bit quiet. There’s a little bit of a decreased flow– we’re trying to keep visitors to a minimum, we’re trying to keep extra people [home]. There are no medical students, no vendors. So, it’s just a little bit calmer and quieter… We haven’t really seen any effect [of COVID on the] quality of care, and there’s certainly been no transmission between patients. So, if there’s any concern about that, I hope I can allay those fears. If you’re ready, and you [have an emergency, or] need to have [surgery] anywhere in the country, as long as [the hospital is] following the CDC and WHO guidelines, as most hospitals are, you should be completely safe.”

Dr. Jeffrey P. Greenfield, on the current state of hospitals in the epicenter of U.S. pandemic (NYC) on May 21, 2020

If you/someone you love is having mild to moderate symptoms…

  1. Keep track of them in a daily log.
  2. Call your doctor or local urgent care. They may either talk to you right then, or set up a video consultation
  3. Tell them all your current symptoms and how long you remember having them. Reference your log!
  4. If you have a chronic illness, let them know.
  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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7. How do I protect my and my loved ones’ mental health?

It is completely reasonable to be anxious or scared, especially if you or someone you love in chronically ill. Coping with the stress that this pandemic causes is important to maintain a healthy body and immune system! Remember: mental health is health, too!

1. Focus your mindset.

So much of coping is knowing when to be worried and when to turn those worried thoughts off. Unfortunately, this one is also the hardest step on this list. A lot of people need to practice these to get good at them. But stick with them! Believe it or not, a lot of these tips help chronic pain, too:

Stay positive. We know, we know… this advice gets really old really quick… But hear us out: actively choosing to focus on positive words and thoughts can help more than you think! For example, we’ve chosen to call the act of staying 6-feet away from others “physical distancing” rather than “social distancing,” because “socially distant” is the last thing we want to be! We do not need to be socially distant, we need to be physically distant. In fact, we should be focusing on staying extremely socially close to the people we know and care about to help us cope with the fact that we are so far apart! Already, we can start to feel a little bit better because we are reminded that we’re still connected to others in a meaningful way.

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 feel really silly at first if you’ve never tried it before, 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.

2. 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! For example, the NIH and CDC only allow vetted information to be put out. You can also search other non-governmental websites through the Health-On-The-Net organization, an international watchdog that certifies websites with accurate scientific and medical information. (Like ours!)

If you have questions, contact your health care provider, or email us at info@bobbyjonescsf.org.

3. …But 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 critical to take a step away from social media, the internet and the news when everything starts to feel a little dark and upsetting.

There are plenty of things you can try:

Visit a local park, sit outside or take a walk. Everyone with Chiari and syringomyelia has a different level of ability when it comes to getting outside, so only do what you can! But getting out into nature and taking a walk or breathing in some fresh air (with the appropriate face coverings and safety precautions, of course) can really help you reset your mind!

Distract yourself with something fun! You can try your hand at some art or fun DIY tasks you found on Pinterest, or you can even color in our unite@night coloring and puzzle pages. Have a web conference or game night with your friends online, watch some television, read a book, learn a new recipe… any little thing you can do to take yourself away for a bit will help!

4. Don’t neglect 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.

5. Actively seek out help when you need it.

There are entire organizations devoted to mental health. The National Alliance on Mental Health is the organization in the U.S. that offers resources and programs around the country. They also have a HelpLine that you can call Monday-Friday from 10am-6pm Eastern Time and talk to volunteers: 1-800-950-NAMI (1-800-950-6264). Not a talker? You can email them at any time: info@nami.org

Seeking out help doesn’t always mean talking to someone! There is an endless amount of content online that can help you de-stress and focus on what matters. Try looking up self-care and meditations on YouTube. Google is even working to make it easier to find content that helps or therapists in your area who you can talk to online!

If stress ever 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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8. 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!

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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9. 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

Chiari Neurosurgical Center at Neurological Surgery, P.C. | Long Island, New York | Dr. Paolo Bolognese, Neurosurgeon; Dr. Roger Kula, Neurologist

  • To guarantee safety, the Chiari Neurosurgical Center are switching to a 100% electronic exchange of information, including imaging files, to avoid the potential spread of contagion via US Mail and Express Mail, as well as potentially dangerous trips of our patients to the post office. The entire outpatient activity has been already switched to tele-medicine.

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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: 05/28/2020