Preparing for a surgical procedure can be a daunting and anxiety-inducing prospect for anyone. But surgery can be especially nerve-wracking if you’re living with the complex condition known as mast cell activation syndrome. Because of the unique challenges that come with mast cell activation syndrome, it’s critical to have a clear plan of action and open communication with your surgical team leading up to the procedure.

So I’ve compiled a guide to help you navigate the healthcare system and facilitate conversations with your doctors and healthcare team to mitigate risks, minimize complications, and optimize your surgical experience. Let’s start by briefly defining the role mast cells play and what happens when they begin malfunctioning.

 

mast cells under a microscope

What Are Mast Cells?

Mast cells function as highly sophisticated components of your immune system. These small but mighty immune cells serve as frontline defenders – vigilantly patrolling your body for potential threats. Upon sensing danger, mast cells swiftly initiate a process known as degranulation – releasing a potent mix of inflammation-inducing signaling molecules.

In a well-regulated immune system, mast cells operate through a precise sequence that starts with degranulation and the release of a cascade of pro-inflammatory signaling molecules – jumpstarting the immune response. Once the threat is identified, neutralized, and eliminated, your immune system ramps back down – settling back into equilibrium and shifting mast cells back into standby mode.1

But sometimes, this delicate balance can be thrown off-kilter and cause your mast cells to begin malfunctioning.

 

Woman thinking about mast cell activation syndrome

Mast Cell Activation Defined: What Is Mast Cell Activation Syndrome (MCAS)?

In some cases, your mast cells can become over-reactive and overly aggressive – degranulating and releasing far too many inflammatory mediators, far too often. These hypervigilant mast cells send your immune system into overdrive and can spiral into what’s known as mast cell activation syndrome or MCAS.

In MCAS, your immune system’s ability to distinguish between harmless and harmful stimuli becomes impaired – meaning they can misinterpret all kinds of things as a serious threat. This inappropriate and exaggerated response can have serious consequences and trigger a wide variety of perplexing, and life-disrupting symptoms.2

MCAS can pose a particularly tricky challenge when it comes to surgical procedures.

 

group of doctors in the middle of surgery

Mast Cell Activation and Surgery

Surgical procedures can be especially tricky if you have MCAS because there are a significant number of potent triggers that are nearly impossible to avoid. Some of the potential triggers that are often encountered during surgical procedures include:3,4

 

Pain:

Your nervous system and your immune system are intricately interconnected. When the nervous system detects pain, it releases signaling molecules from nerve endings which can directly activate mast cells and trigger degranulation.

However, the degranulation of mast cells during surgery or in response to pain is not a one-way process. You see, the mediators released by mast cells can interact with neurons, prompting them to release chemicals or neurotransmitters – including a compound known as substance P. Substance P is known for its role in pain perception and can enhance the inflammatory response by causing additional mast cell degranulation.

This creates a feedback loop where the nervous and immune systems continually interact and amplify each other’s responses – potentially creating an upward spiral of pain and inflammation during and after surgery. This complex feedback loop makes the pain associated with surgery a powerful potential MCAS trigger.

 

Anxiety and Stress:

Mast cells are strategically stationed throughout your body to respond swiftly to signals from the nervous system. Through this process called neuroimmune interaction, your mast cells and your nervous system are in constant communication. This interaction is crucial in understanding how mast cell degranulation can actually drive anxiety and stress responses.

You see, while psychological stress can indeed activate mast cells to some degree, it’s important to recognize that the degranulation of mast cells itself can be a significant driver of anxiety. That’s because when mast cells degranulate, they spew out a cocktail of mediators that interact with your nervous system by influencing brain chemistry, stimulating sensory neurons, and altering neurotransmitter levels – creating and intensifying feelings of stress and anxiety. This complex relationship between your mast cells and your psychological state can make the stress leading up to surgery particularly potent.

When it comes to coping with the anxiety that typically accompanies MCAS, It’s important to acknowledge that your experiences are valid – and understanding this connection between your mast cells and your nervous system can help you manage both your physical and emotional well-being more effectively leading up to your procedure.

 

Medications:

Surgical procedures often require a cocktail of different medications – like muscle relaxants, anesthetics, antibiotics, pain medications, and more. Certain drugs used in the surgical setting can act as triggers for mast cell degranulation due to their chemical composition, potential allergenic components, or their ability to interact with mast cells and stimulate their activation.

 

Temperature Changes:

Surgery is often performed in cold rooms to maintain a sterile environment and to facilitate the use of specialized equipment, which can lead to significant temperature changes during the procedure. Mast cells are sensitive to temperature changes, and fluctuations in temperature can directly stimulate mast cell activation. And cold temperatures, in particular, have been shown to trigger mast cell degranulation.

 

Friction and Mechanical Trauma

Mechanoreceptors are specialized sensory receptors that detect mechanical stimuli, such as pressure, stretch, vibration, or touch, and convert them into electrical signals that your nervous system can interpret. The physical stress placed on tissues throughout the surgical procedure can activate these mechanoreceptors – triggering mast cell degranulation. Some of the specific factors that can provoke mast cell degranulation during surgery include:

  • The surgical procedure: Tissue manipulation, cutting, and retraction during surgical procedures can induce mechanical stress.
  • Blood pressure cuffs: Inflating blood pressure cuffs can compress underlying tissues.
  • Tourniquets: The application of tourniquets to restrict blood flow during surgery can cause mechanical trauma to tissues.
  • Sutures: The placement and tightening of sutures to close surgical incisions can create mechanical stress on surrounding tissues.
  • Positioning: Positioning during surgery can cause mechanical pressure on tissues and nerves.
  • Neck positioning for intubation: Manipulating the neck for endotracheal intubation (placement of an airway tube to assist with breathing) during anesthesia induction can compress tissues and stimulate mast cells in the neck area, potentially triggering degranulation and local inflammation.

This combination of effects can add up to a whole lot of mechanical stimuli that can potentially set off your mast cells.

 

Chemicals and Irritants:

The surgical setting relies on numerous chemicals to maintain sterility, promote wound healing, and facilitate surgical procedures. It’s nearly impossible to avoid contact with certain chemical components – like those found in:

  • Adhesives used to close surgical incisions
  • Dressings to protect wounds and surgical incisions
  • Disinfectants and antiseptics applied to skin
  • Sterilizing agents used to sterilize surgical equipment
  • Anesthetic agents used for numbing
  • Contrast agents for imaging procedures, such as angiography or fluoroscopy-guided surgeries.
  • Hemostatic agents used to control bleeding during surgical procedures.
  • Preservatives and additives present in medications, intravenous fluids, and topical preparations administered before, during, or after surgery
  • Lubricants and gels utilized for medical device insertion or manipulation, such as catheters or endoscopes

This laundry list of factors can make surgery especially tricky if you’re living with MCAS. But surgery can be even further complicated due to a lack of understanding surrounding MCAS in many conventional medical settings.

 

doctor talking with patient in a hospital room

MCAS and the Healthcare System: Why Is MCAS Not Always Recognized Or Well Understood By Healthcare Providers?

Mast cell activation may be fully recognized and understood in certain spheres of medicine (primarily those based in getting to the root cause of disease, like Functional Medicine). But that understanding of MCAS isn’t always the case when navigating our conventional healthcare system. Many healthcare providers may not be well-versed in or have a very good understanding of the complexities of MCAS due to factors like:

  • Recent recognition of MCAS: MCAS is a relatively newly recognized condition in the medical field, with awareness growing significantly over the past decade. As a result, many healthcare providers may not have received formal education or training specifically addressing MCAS during their medical education or residency programs.
  • Evolving diagnostic guidelines: Diagnostic criteria for MCAS have undergone significant evolution in recent years, reflecting advancements in research and understanding of the condition – meaning these evolving diagnostic guidelines may not be widely disseminated or integrated into clinical practice.
  • Specialty focus: Conventional healthcare providers are typically trained as experts in specific body systems and specialties (such as gastroenterology, dermatology, neurology, etc). MCAS is a multisystem disorder that can affect various organs and body systems, including the skin, gastrointestinal tract, cardiovascular system, and respiratory system – meaning its diverse and often overlapping symptomatology may not align neatly with the traditional boundaries of medical specialties.
  • Emphasis on symptom management: In many healthcare settings, there is a predominant focus on managing symptoms rather than investigating underlying root causes of illness. This approach means many providers are unaware of many potential underlying causes – like overactive mast cells – that may be the culprit behind symptoms.

Because it’s not uncommon for surgeons, anesthesiologists, and other conventionally trained medical staff to be unclear on the specifics of MCAS, it’s crucial for you to act as your own advocate. Most clinicians worth their salt will be more than willing to listen and collaborate with you to ensure the safest, smoothest procedure possible.

So let’s dive into some practical, tactical tips for starting the conversation and ensuring you and your healthcare team are on the same page when it comes to your MCAS.

 

patient talking to their doctor about MCAS

How To Talk To Your Surgeon, Anesthesiologist, and Healthcare Team About MCAS

If you have MCAS and are preparing for a surgical procedure, here are some of the most important things you can do to ensure you and your surgical team are on the same page.

  • Request a conversation: Ask to speak directly to both the surgeon and anesthesiologist before the surgery – preferably as far in advance as possible.
  • Be prepared and organized: Have a plan for important points to touch on during this conversation and have a list of your medications, allergies, and known triggers as well as any other diagnostic tests and paperwork on hand to show them. Stick to important information and make it easy for your provider to interpret so you can keep the conversation to the point and concise.
  • Bring research: Bring in any relevant studies or up-to-date research to help your healthcare team see that you are educated and advocating for yourself. The truth is, it’s typically not their fault that they are not well-versed in MCAS, so bringing in a relevant study that shows that your symptoms align with those listed in reputable studies can help them better understand MCAS. Just remember to keep it concise and easy for them by highlighting important points – they likely have a busy schedule and limited time.
  • Connect your clinicians: Connect your surgical team with the practitioner who is most familiar with your health conditions – especially MCAS. That way, they can collaborate together on the best plan of action for your upcoming procedure.
  • Bring someone you trust: It can be helpful to bring along someone you trust who is familiar with your health history. They can help you convey your concerns and interests, provide support, and help ensure you don’t miss important points during the conversation with your providers.
  • Make it a two-way conversation: Ask your surgeon and anesthesiologist what they are thinking and how they are thinking of approaching the procedure. Letting them know you’d like to be a part of the decision-making process can go a long way in making sure everyone is on the same page and help alleviate stress and anxiety on your end.
  • Trust your gut and don’t be afraid to speak up: Sometimes you will simply not be compatible with your providers or you may encounter clinicians who do not make you feel comfortable. It’s ok to politely decline being seen by a doctor who doesn’t make you feel heard and safe – and it’s more than okay to find a new one that is a better fit. Your well-being is the top priority and you deserve to be seen by a clinician who makes you feel heard – so don’t settle for anything less.

For an easy-to-print guide on talking to your doctor about MCAS, head over and grab my free guide that dives a little deeper into 10 ways to effectively present your MCAS case to your doctors so they actually listen and understand. Click here to access it now.

Now that you have an idea of how to navigate this crucial conversation, let’s dive into some nitty-gritty details that can help you and your surgical team prepare for surgery.

 

patient before surgery

Preparing For Surgery With MCAS

Being proactive and taking some steps to prepare for your surgery in advance can be immensely helpful when it comes to preventing flares or complications with MCAS. Here are some key points you should discuss with your healthcare team leading up to surgery:

 

Medications:

Discuss which medications will be utilized during anesthesia, for pain management, any antibiotics, etc. Multiple medications can be used to accomplish the same effect – some with a higher potential for triggering mast cell degranulation. This means, as someone living with MCAS, you may not tolerate some medications as well as others.

This complex interplay between medications and MCAS highlights not only the importance of discussing medication choices with your healthcare team but also the importance of being as “controlled” as possible with your MCAS leading up to surgery. Being “controlled” with MCAS means having symptoms well-managed and stable. Often this can be accomplished with lifestyle factors (like avoiding triggers and taking excellent care of your well-being) paired with a regimen of antihistamines, mast cell stabilizers, and/or other anti-inflammatory medications.

Sometimes, it can also be helpful to increase mast cell-targeted therapy prior to surgery in anticipation of the procedure. By controlling MCAS and optimizing the management of symptoms, we can minimize the risk of mast cell activation during and after surgery – ensuring a smoother, safer surgical experience.

The specifics of medications and strategies used to control MCAS will vary from individual to individual and will be entirely unique to you – so it’s of the utmost importance to be in close communication with your entire healthcare team leading up to the procedure.

 

Pain, Anxiety, and Stress Management:

Because pain, anxiety, and stress are almost always an unavoidable component of surgery, it’s important to plan ahead on how they will be managed. There should be a clear plan of action in place to thoroughly manage pain before, during, and after surgery with medications less inclined to provoke mast cell degranulation (like fentanyl, remifentanil, or buprenorphine).5,6,7

It can also be helpful to employ the use of anti-anxiety medications leading up to and following surgery to keep stress levels in check. You can also request a private, quiet room away from the hustle and bustle of the nursing station or entryways during recovery to help reduce stimulation that can provoke anxiety.

 

Minimizing Mechanical Trauma and Extreme Temperature Changes

Mechanical trauma and temperature changes are unavoidable during a surgical procedure, but there are some steps that can be taken to minimize their impact. While you may not have a ton of control over exactly what takes place within the operating room, it can be helpful to request that your surgical team follow some simple steps such as:5,6,7

  • Careful position during and after surgery
  • Minimal and careful use of tourniquets, tape, blood pressure cuffs, etc.
  • Warming IV fluids before they are administered
  • Using warm blankets to maintain warmth before, during, and after surgery

While surgery inherently comes with some level of tissue trauma, thorough planning can help minimize factors that can activate your mast cells.

 

Vigilant Observation:

It’s crucial that the healthcare team is well aware of any early signs of mast cell mediator release so they can react promptly. Because of the use of surgical drapes and airway tubes during surgery, it’s important that your anesthesiologist and surgical team are constantly and vigilantly observing for any indication of mast cell activation (like hives, flushing, obstructed airways) so they can swiftly make changes as needed.

 

Management Of MCAS and Strictly Avoiding Triggers Leading Up To Surgery

In the days leading up to surgery, it’s particularly important to avoid any known or potential triggers to keep mast cells as stable as possible. Ensure you’re taking all medications as prescribed and taking good care of yourself – i.e. eating well, staying hydrated, getting plenty of rest, managing stress, etc. It may also be helpful to incorporate some mast cell stabilizing agents to help stabilize mast cells in preparation for surgery.

 

patient resting in hospital bed after surgery

Managing MCAS After Surgery

Careful planning and proactively preparing for surgery is crucial if you’re dealing with MCAS. But managing this complex condition certainly doesn’t end there. Taking steps to prevent flares and stabilize your mast cells requires a big-picture approach. If you’re looking for some resources to help you manage MCAS post-op and beyond, I recommend checking out the following resources:

Taking steps to manage and heal the underlying dysfunction causing your mast cells to begin malfunctioning is the key to minimizing symptoms, reducing your risk during any future surgeries, and getting back to feeling like yourself again.

 

woman feeling alone in a crowded street

Are You Grappling With MCAS?

I hope you found this guide helpful. Living with mast cell activation syndrome can feel daunting and downright scary at times – especially when preparing for surgery. But with the right plan of action and the right support, you can empower yourself to advocate for the best possible care and the smoothest recovery possible.

If you’re grappling with MCAS and are feeling overwhelmed and anxious about the idea of undergoing surgery, you don’t have to go at it alone. Here at AIM Center for Personalized Medicine, MCAS is one of our specialties. We can help you not only more confidently plan for your upcoming surgery, but we can collaborate with you and the rest of your healthcare team to help you get to the root cause of your symptoms.

To learn more about AIM and get started on your journey to better health, simply click right here.

 

Resources:

  1. Histology, Mast Cells – StatPearls – NCBI Bookshelf (nih.gov)
  2. Mast Cell Activation Syndrome: Symptoms, Causes, and Treatment (webmd.com)
  3. Symptoms and Triggers of Mast Cell Activation – TMS – The Mast Cell Disease Society, Inc (tmsforacure.org)
  4. Perioperative Management – TMS – The Mast Cell Disease Society, Inc (tmsforacure.org)
  5. Surgery and Anesthesia (mastocytosis.ca)
  6. Mast cell activation syndrome—anesthetic challenges in two different clinical scenarios – PMC (nih.gov)
  7. Medical algorithm: Peri‐operative management of mastocytosis patients – PMC (nih.gov)