Guide for patients having surgery

Anesthesia
It is important to ask to meet with your anesthesiologist in advance to discuss the resources below. Whether or not you have a formal diagnosis, many patients with ME have mast cell activation disorder or are otherwise sensitive to certain classes of drugs currently used in anesthesia. Your anesthesiologist may need to create a special anesthesiology protocol, for example, avoiding histamine-releasing and muscle-relaxing drugs.

It's helpful if you're familiar with your body's reactions to pain relieving drugs they may use post operatively.

Since ME patients have hydration/blood volume concerns, ask if the anesthesiologist could allow you to drink clear fluids beforehand, depending on the surgery.

In addition, patients with ME may have undiagnosed or subclinical structural cervical issues such as craniocervical instability or cervical spinal stenosis. Making sure if at all possible, your head and neck are kept in a neutral position during surgery to help limit the risk of exacerbation or damage. This is especially important for patients with hypermobility, Ehlers-Danlos syndrome or Postural orthostatic tachycardia syndrome.

Handouts

 * Advice for PWCs Anticipating Anesthesia or Surgery (Hunter Hopkins Center)

Recovery at the hospital
If you are staying overnight at the hospital, it's important to talk to your surgeon in advance regarding your needs for sleep and minimal disruption.


 * Discuss in advance any sound, light, or chemical/fragrance sensitivities (if possible, a sign at your door or next to you can help remind nurses changing shifts)
 * Ask for a sound-proof door (v. an open curtain) and placement on quiet ward
 * Ask whether it's possible to minimize nighttime disruptions (e.g., middle of the night blood pressure monitoring) if this isn't a concern for your specific medical condition
 * Discuss any food sensitivities in advance
 * Discuss temperature sensitivities, and possible accommodations including adjustment of operating and recovery room thermostat, provision of extra blankets or ice chips
 * If you have experience taking IV saline, discuss the possibility that you will need extra hydration before, during, or after surgery. You may need to have your surgeon's office consult with your ME specialist as doctors may not be familiar with the finding that many POTS and ME patients have low blood volume and be reluctant to provide more hydration than they would a healthy person.

It may take you longer to recover and so if your procedure generally doesn't require an overnight stay, you might ask that they reserve a bed for you just in case. Or if your procedure requires an overnight, ask for a second night.

Discharge
If you don't normally use a wheelchair, you may need one to get to your car. If you normally use a wheelchair, you may need a reclining wheelchair or gurney. These scenarios are also best discussed in advance as nurses may not feel empowered to order these, especially if they are not a part of the general hospital protocol, and you may not have access to a doctor at time of discharge. The more you can make sure is entered into your chart in advance of your admission to hospital to address your unique, potential needs, the better.

Mast cell activation disorder
Pain and stress can trigger mast cell degranulation reactions; adapted pain management and sedation protocols may be indicated, especially if the patient has experienced medical trauma in the past. If the patient experiences anaphylactic reactions, epinephrine must be on hand during the procedure. A pre-procedure round of corticosteroids may also be indicated.

Excessive bleeding is common in mast cell disorders, even when blood counts are normal. This is related in part to the release of heparin from mast cell granules. Pressure dressings are indicated even for minor procedures. For major procedures, history of mast cell disorder should be included in bleeding risk assessment, and may require special protocols.

Learn more

 * Anesthesia Recommendations For Chronic Fatigue Syndrome & Myalgic Encephalomyelitis