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Guide for patients having surgery
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== Talking to your surgeon == === Pain management === It's helpful if you're familiar with your body's reactions to pain relieving drugs they may use post operatively. {{See also|Analgesics}} === Electrolytes === Low intracellular [[magnesium]] and low [[potassium]] have been found in patients with ME. [[Red blood cell magnesium]] (an [[intracellular]] test) and serum potassium should be checked before surgery and replenished if borderline or low. Low magnesium or potassium depletion could potentially lead to [[cardiac arrhythmia]]s under anesthesia.<ref name="anapsid">{{Cite web | url=http://www.anapsid.org/cnd/drugs/anesthesia.html | title = Recommendations For Persons With CFS Or Fibromyalgia Who Are Anticipating Surgery | last = Lapp | first = Charles | authorlink = Charles Lapp | date = Jan 1, 2014 | website = Melissa Kaplan's Chronic Neuroimmune Diseases|archive-url=|archive-date=|url-status=|access-date=}}</ref> ==Talking to your anesthesiologist== It is important to ask to meet with your anesthesiologist in advance to discuss the resources below. === Anesthetic agents === Whether or not you have a formal diagnosis, patients with ME may also have a diagnosis of [[mast cell activation disorder]] or may otherwise be sensitive to certain classes of drugs used for anesthesia. Your anesthesiologist may need to create a special anesthesiology protocol; for example, avoiding [[histamine]]-releasing, hepatoxic and [[Category:Muscle relaxants|muscle-relaxing drugs]]. Β Β Β === Hydration === Since ME/CFS patients have hydration/[[low blood volume]] concerns, ask if the anesthesiologist could allow you to drink clear fluids beforehand, depending on the surgery. === Cervical spine risks === In addition, patients with [[ME/CFS]] who have structural cervical issues such as [[craniocervical instability]] (CCI) or [[cervical spinal stenosis]] will need to have their head and neck 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]] (EDS) or [[Postural orthostatic tachycardia syndrome]] (POTS).{{citation needed | date = 2022}} === Resources to share with your anesthesiologist === * [http://drlapp.com/resources/advice-for-pwcs-anticipating-anesthesia-or-surgery/ Advice for PWCs Anticipating Anesthesia or Surgery] - Hunter Hopkins Center * [https://www.prohealth.com/library/evergreen_pages/anesthesia-recommendations-for-chronic-fatigue-syndrome-myalgic-encephalomyelitis Anesthesia Recommendations For Chronic Fatigue Syndrome & Myalgic Encephalomyelitis] ==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 sensitivity]], [[Photophobia|light sensitivity]] or [[Chemical sensitivities|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 (rather than an open curtain) and placement on a 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 sensitivity|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 [[Intravenous saline|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 [[Postural orthostatic tachycardia syndrome|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. == Considerations for specific diagnoses == === ME/CFS Resources === ==== ME/CFS Resources ==== * [http://drlapp.com/resources/advice-for-pwcs-anticipating-anesthesia-or-surgery/ Advice for PWCs Anticipating Anesthesia or Surgery] (Hunter Hopkins Center) * [https://www.prohealth.com/library/evergreen_pages/anesthesia-recommendations-for-chronic-fatigue-syndrome-myalgic-encephalomyelitis Anesthesia Recommendations For Chronic Fatigue Syndrome & Myalgic Encephalomyelitis] * [http://www.anapsid.org/cnd/drugs/anesthesia.html Surgery, Anesthesia and CFS/FM/MCS] === Postural orthostatic tachycardia === ==== POTS Resources ==== === 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<ref name="mastocytosis">{{Cite web | url=https://www.mastocytosis.ca/en/treatment/surgery-and-anesthesia | title = Surgery and Anesthesia | last = Gould | first = Nancy | date = 4 May 2015 | website = Mastocytosis Society Canada|archive-url=https://web.archive.org/web/20180727182631/https://www.mastocytosis.ca/en/treatment/surgery-and-anesthesia|archive-date= Jul 27, 2018|url-status=|access-date=Jul 27, 2018}}</ref><ref name="TMS">{{Cite web | url=https://tmsforacure.org/perioperative-management/ | title = Perioperative Management | last = No Author | first = | date = 2018 | website = The Mastocytosis Society|archive-url=https://web.archive.org/web/20180727182816/https://tmsforacure.org/perioperative-management/|archive-date=Jul 27, 2018|url-status=|access-date=Jul 27, 2018}}</ref>. 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<ref name="Afrin2014">{{Cite journal | last = Afrin | first = Lawrence B. | authorlink = Lawrence Afrin | date = Feb 6, 2014 | title = A concise, practical guide to diagnostic assessment for mast cell activation disease| url = https://www.wjgnet.com/2218-6204/full/v3/i1/1.htm|journal=World Journal of Haematology|volume=3 | pages = 1-17|via=Baishideng Publishing Group}}</ref>. 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. ==== MCAS Resources ==== * [https://tmsforacure.org/wp-content/uploads/2016-TMS-ER-Protocol-Pages-2.pdf The Mastocytosis Society Emergency Room Protocols] === Ehlers-Danlos Syndromes === Local anesthetic might be less effective in many people with EDS joint hypermobilty type, but general anasthesia should not have special considerations. <ref name="EDS-skin">{{Cite web | url=https://www.ehlers-danlos.org/information/the-skin-in-hypermobile-ehlers-danlos-syndrome/ | title = The skin in hypermobile Ehlers-Danlos syndrome|website = The Ehlers-Danlos Support UK|language=en|access-date=2018-09-03}}</ref> ==== EDS Resources ==== * [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4223622/ Recommendations for anesthesia and perioperative management in patients with Ehlers-Danlos syndrome(s)] (2014) == See also == * [[Best practices for hospitals]] == Learn more == * [http://drlapp.com/resources/advice-for-pwcs-anticipating-anesthesia-or-surgery/ Advice for PWCs Anticipating Anesthesia or Surgery] (Hunter Hopkins Center) * [https://www.prohealth.com/library/evergreen_pages/anesthesia-recommendations-for-chronic-fatigue-syndrome-myalgic-encephalomyelitis Anesthesia Recommendations For Chronic Fatigue Syndrome & Myalgic Encephalomyelitis] * [http://www.anapsid.org/cnd/drugs/anesthesia.html Surgery, Anesthesia and CFS/FM/MCS] == References == {{Reflist}} [[Category:Guides]] [[Category:Potential treatments]] [[Category:Surgical treatments]]
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