This page was updated on March 11, 2021 by Kaitlyn Esposito, MPH.
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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In a majority of places, elective surgeries (like a Chiari decompression) are being scheduled and done routinely.
Depending on local regulations, it is possible that elective surgeries may be stopped at your institution if there is an outbreak of COVID that is concerning to public health officials. The only way to know for sure is to keep in close contact with your local care team!
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, regardless of local outbreaks.
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.
As of January 6, 2021: 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.
Some people may be at a higher risk of becoming infected with the virus.
BUT, don’t forget: a higher risk of infection does not mean symptoms will definitely be severe. To learn more about how likely someone may be to have a severe illness read the above question on the subject.
Based on what we know right now, the following people may be at a higher risk of becoming infected with the virus (with or without severe disease):
Currently, there is no specific data on infection rates specifically in patients with Chiari, syringomyelia or related disorders.
We plan to actively research this in our International Patient Registry. If you would like to contribute to this valuable research, learn more about the registry!
There is also no specific information about COVID-19 and individuals who have implantable devices, but there is some concern of infection for this group.
SEA Board member, Dr. Jeffrey Greenfield, spoke a bit about this in a Q&A Session at the start of the pandemic:
“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
Learn more about how to reduce the likelihood of infection.
SEA Board Member and neurosurgeon, Dr. John 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 Heiss, statement on Chiari, syringomyelia, immune suppression and COVID-19 from March 2020
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”!).
Updated as of January 6, 2021: Across the globe, we are experiencing pockets of outbreaks in different areas during these colder months. As more people are stuck inside, and fewer events can occur in a physically-distant setting, it becomes easier for the virus to spread in local communities. For now, it is best to follow CDC guidance on how to stay safe and prevent exposure.
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.
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:
Chiari and related disorder patients and caregivers are smart, so you might look at this list and see a lot of overlapping symptoms with 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 you are, then 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*:
* – 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 may be scaring you.
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.)
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 before this pandemic on the usefulness of cloth masks suggests that they are better than no protection at all.
IMPORTANT: Face coverings are not a a replacement for physical (social) distancing– stay 6-feet apart from people outside your home!
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.
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!
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):
There are different types of COVID-19 tests that look for different things! The Food & Drug Administration (FDA) has an excellent webpage that explains the differences between the kinds of tests that are available (diagnostic versus antibody tests) and why you might need one, versus another.
Usually, if you are getting a COVID test at your health care provider’s office or at an urgent care, you will usually be getting a diagnostic test. Diagnostic tests may be “rapid tests“, sometimes called antigen tests or “PCR tests” also called molecular tests. The FDA fact sheet can describe the big differences between them, but it is recommended that you get the PCR test to be extra sure of your results!
There are also periods of time when you should be looking for diagnostic tests.
If you have symptoms. If you have symptoms of COVID-19, you should be tested immediately. If your initial result is negative but you are still experiencing symptoms, check with your health care provider to see if you should be tested again.
Before you travel. If you are going to visit someone who has safely quarantined, you and they should still get tested.
If you leave the house on a semi-regular basis. Many localities are recommending periodic testing if you work outside the home, or if you frequently leave home.
New York City (where many of the staff at BJCSF live!) has good testing recommendations, if you are interested in learning more.
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 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 10 days. Connect with loved ones online to stay social
Updated as of January 6, 2021
You do not need to be afraid of going to the hospital in any emergency situation. Most hospitals have fairly effective protocols in place to reduce transmission of the virus.
“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… 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
The CDC also has excellent resources explaining what to do if you think you or someone you love might be sick.
Updated as of May 2020
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!
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.
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.
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. 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!
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.
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.
This question is very important to patients living with chronic pain. So, let’s talk about it…
A study in The Lancet hypothesized that because the COVID-19 virus infects cells using a specific cellular pathway, then it might be possible that anti-inflammatory medications like ibuprofen could increase likelihood of infection or worsening symptoms. Why? Anti-inflammatory medications can up-regulate the cellular enzymes involved in the cellular pathway that the virus uses to infect people. Because of this, it might seem scientifically plausible that there could be risks there.
It had also been previously reported that the World Health Organization (WHO) was recommending that people take paracetamol/acetaminophen instead of ibuprofen.
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 knew about the virus at the time suggested that certain properties of ibuprofen may put people at greater risk…
There are two problems with this…
Ultimately, the hypothesis is just that right now: an educated guess.
On March 18, 2020 the WHO stated outright that they are not recommending that people stop taking ibuprofen at this time.
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!
Updated as of January 6, 2021 by Kaitlyn Esposito, MPH; Reviewed by Brandon Rocque, MD
The following people are currently believed to be at increased risk for severe disease. This means that if these individuals become infected with the virus, they may be more likely to be more sick or have bad health outcomes.
Adults of any age with neurological disorders may be at an increased risk of severe disease. Because Chiari malformation and syringomyelia are neurological disorders, we feel it is important for us to address this issue a bit more.
The evidence to support this high-risk category is still very weak. The CDC has identified a small number of studies that found people with severe symptoms (or who needed to be hospitalized) also said they had a neurological disorder. But the evidence, while consistent, only amounts to a handful of studies. You can read them here, here, here and here. More research is being done and will definitely be needed.
The sample sizes are also pretty small. The number of patients in most of these studies was only a couple hundred. Several thousands of people would need to be included in studies like these in order to be more convincing.
“Neurological disorders” is too vague. The neurological disorders reported in these studies are not usually identified– “neurological disorders” is a catch-all term. The studies certainly did not identify the neuro conditions in their patients as Chiari, syringomyelia or similar disorders. This means that the disorders the patients are reporting can be anything– from more severe and life-altering conditions like dementia or amytrophic lateral sclerosis (ALS), to more common conditions like headache. This is also important because dementia and other more severe neurological disorders are more likely to occur in older individuals… who are already at a higher risk of severe symptoms. More research still needs to be done to tease out the different groups!
While public health officials are telling patients with neurological diseases to be careful just in case, we can not say that there is (for sure) a higher risk… just yet! Until then, the most important thing to do is to avoid becoming infected at all. Learn how to reduce your risk of infection.
Updated as March 11, 2021
First of all, there is more than one! There are several COVID-19 vaccine candidates in clinical trials. Right now, only three of these vaccines are available, though: the Pfizer-BioNTech, Moderna, and Johnson & Johnson vaccines.
These vaccines are currently available thanks to something called an Emergency Use Authorization (EUA) from the FDA. You can read more about what an “EUA” is on the FDA’s website… but essentially, an EUA means that the FDA has determined that, even though the clinical trials are not completely finished, the currently available data show that these vaccines are safe and effective and can be used in a time of crisis– like this pandemic.
The first two (Pfizer and Moderna) vaccines use mRNA to deliver instructions to your immune system to protect against COVID-19. For optimal immunity, these vaccines require two doses.
The last one (Johnson&Johnson) uses a viral “vector” to deliver instructions to your immune system that protects you against COVID-19. The virus in this vaccine is NOT the virus that causes COVID-19! Instead, it is an inactivated virus: once it’s in the human body, it is unable to replicate and simply gets destroyed by your immune system. So, the instructions to provide immunity against COVID-19 are able to get in, but you won’t have to worry about getting infected by any viruses. This vaccine only requires one dose.
The FDA has determined that both available vaccines are safe and effective in developing immunity to COVID-19.
These vaccines were produced as part of Operation Warp Speed. That might sound a little scary– like it was thrown together very quickly– but that’s actually not the case! In a way, we were sort of lucky that COVID-19 was a coronavirus… SARS-CoV-2, to be exact! Scientists and doctors have been working on vaccines for various coronaviruses for decades now.
When SARS-CoV-1 first emerged (commonly known as the disease “SARS”), scientists had started working on vaccines right away. That was back in the early 2000s. Scientists have also been studying if it would be possible to make a vaccine for the common cold (yet another coronavirus!) for many years. Granted, that one has proven much more difficult, but the research that was already done laid the groundwork for over 60 vaccine candidates and for Operation Warp Speed. The relatively new technology called CRISPR also has become very well-researched in the past few years. This technology was an integral part of the earliest vaccines to receive an EUA! All of this previous research made jumping into a vaccine for COVID-19 possible.
Right now, the most common side-effects of the COVID-19 vaccines are similar to the side-effects of most other vaccines:
So far, these side-effects usually do not last longer than a day or so.
As with any lab-developed pharmaceutical or, indeed, any naturally-occurring substances, severe reactions are always a possibility.
Allergic reaction. There was some initial concern about allergic reactions to the Pfizer-BioNTech vaccine that occurred in the U.K. during mass-vaccination efforts. These reactions occurred outside of the clinical trial and have been managed and reported since. As of the day this post was written, there are no allergic reactions reported in the Moderna vaccine (this may change).
BOTTOM LINE: Severe allergic reactions have occurred, though extremely rarely. In fact, severe allergic reactions occur rarely in some people due to naturally occurring substances– like peanuts! The CDC is doing a really good job right now as far as monitoring and providing good information about adverse reactions, including allergic reactions.
Phase 3 trials are done in many thousands of people who are representative of the overall population. At this time, no data on adverse events is being looked at in smaller, more clinically similar groups (e.g., syringomyelia patients, etc.)… that’s just not what Phase 3 trials are for.
Any analysis (if any) that is done for smaller groups (like patients with these disorders) will happen after the initial trials are completed. Probably by looking back at available data.
All that said, there is currently no evidence that having Chiari, syringomyelia, or any related disorder would make anyone more or less likely to have a bad reaction to the vaccine.
Published: 03/17/2020
Updated: 03/11/2021
