Medical trauma - surgery's unspoken sting
So you’ve had a new hip, knee, shoulder, stent or Caesarean section. Operation done – why are we left feeling seriously assaulted? Why are we angry, depressed, covered in bruises, feel invaded, taste buds not working, having flashbacks, can’t remember what friends have in their coffee, which button to press on the remotes, dreadfully fatigued, not interested in doing things that once gave so much pleasure?
In other countries post-surgical or medical trauma is referred to as the “neglected step-child” of global health in terms of patient numbers, mortality, morbidity, and costs. Medical trauma is defined as the emotional and physical response to pain, injury, serious illness, medical procedures and frightening treatment experiences. Australian health professionals are slow to recognise the long or short term effect on patients or even to warn it might happen. Despite Dr Google giving us reams of often misinformation, we are not the experts – doctors are, though mostly only in their narrow area of expertise, not in how we actually feel and how that affects healing.
Polio survivors are pretty tough. We experienced ‘tough love’, often brutal treatment as children, breeding stoicism. But, knock us out under a general or epidural anaesthetic, carve us up with a knife, leave us in ICU, or ward, waiting for bed pans, no-one to explain what just happened and what will happen, and we too can become depressed, angry, frightened, slowing recovery.
Compound this with a COVID hospital environment of people in full PPE, no visitors, no chaplains, no Pink Ladies, nurses and doctors with little time to comfort, and patients just want to get out of there. In my case, immobile following hip replacement, I was unable to defend myself, freaked by a patient roaming corridors at night, muttering about COVID. Begged next day to go home to my dogs. They let me go.
Following collapse however, I was soon back: ED, ICU, second surgery, allergy to a blood clot medication triggering adrenal collapse. Finally home again furious, talked to neighbours who also recently had surgery. One in a back brace (car accident); another with heart issues (stent); and you can imagine the emotions of a woman going through emergency caesarean section. Each was relieved to learn that their feelings of being confused, exhausted, anti-social, were common. Then a friend told how her Dutch-born husband lapsed into delirium after surgery at Frankston Hospital, believing doctors and nurses were German and it was wartime. Family battled to assure staff he did not have dementia. Mercifully, clarity returned.
Realised that men do it really tough. Men visit the doctor less frequently, have shorter visits, and only attend when illness is in later stages so even less likely to talk about post-surgical concerns (see link). One male friend has flatly refused to talk about his upcoming knee replacement – “I’ll deal with it”.
While talking endlessly over the surgical experience seems obsessive – it is vital to expose those commonly held fears, changes in personality, lack of motivation. Why? Because Health Professionals in Australia particularly, do not talk about post-surgical trauma. Asked for sources, medical friend rightly commented: “you won’t find much on it here”.
As a clinical issue, surgical stress is appreciated, but if the patient is also experiencing emotional trauma, recovery clearly will be compromised. The International Society for Traumatic Stress Studies describes Medical Trauma as “the emotional and physical responses to pain, injury, serious illness, medical procedures and frightening treatment experiences.
“There are lots of different experiences related to illness, injury or medical treatment that can be difficult, uncomfortable or frightening: a sudden, life-threatening illness or injury and the related treatment; shock and feeling out of control when receiving a scary diagnosis; life changing complications or problems during or after a medical procedure; needing an emergency intervention; constant noise in the hospital, frequent medical checks, staff disrupting sleep; seeing frightening images or having frightening thoughts due to delirium while in the hospital”.
These experiences can develop into PTSD where the trauma is constantly replayed. Bad memories can come back at any time. Sounds, smells, touches or tastes may provoke reaction. Also patients, the ISTSS states:
· May not want to go back to the hospital, see the doctor again or take medications making symptoms worse.
· Changes in the way of thinking. May be hard to trust medical providers.
· Feel very nervous, on edge, hard time falling asleep or controlling pain. Suddenly become angry or irritable with self or others.
Surprisingly, this is common. Despite reassuring comments prior, after-effects of anaesthesia and newly prescribed drugs need carefully, gently, explaining – not just outlined in the many leaflets you take home and can’t face reading.
Various medical sites offer advice. Selections follow, plus my experiences:
Advice: Talk with loved ones and healthcare professionals to help reduce anxiety before and depression after surgery.
Experience: Talking through fears with my husband helped me face hip replacement. But which ‘healthcare professionals’ had the time and training to reduce or anticipate the anxiety I was to go through? There were pre-admission interviews with doctors, anaesthetists but not the ones doing the work. I provided full information on the Polio’s need for epidural over general (we are slow to wake up). The epidural involved six agonising stabs in my back. Ended up having a general as well later. Effects on the brain and body of anaesthetic doubled, then tripled by damage to adrenal glands. Fears of permanent brain damage were real.
Advice: a person may feel more in control of their health and the overall situation if they: know how long recovery is likely to take; have a clear plan for follow-up appointments; keep a list of emergency numbers handy
Experience: yes, be organised and informed, especially if feeling frail and confused. Keep paperwork, prescriptions, information leaflets, appointments in a handy folder. Ensure appointments are logged on your calendar immediately. Do not rely on day-before phone reminders. Insist on face to face appointments where possible. Write a list of questions you need answered, do not be fobbed off. OK, life becomes a series of medical appointments for weeks, maybe months and this is depressing. As one neighbour said “It’s Folk Club today, haven’t picked up my guitar, don’t even feel like going. The week is full of doctors’ appointments”. Pick up the guitar and go – make yourself happy, for a couple of hours.
Advice: understand what medications do, how to use them, and how to spot side effects.
Experience: understanding new medications is vital. After serious allergic reaction to blood clot shots, back in ED, hip dislocated. Hospital staff debated over infection versus heart incident as the cause. Senior nurse friend phoned in, suggested adrenal glands may be damaged by surgery or the anti-clot shots. Bingo. Flabbergasted over new long term problem called Addison’s Disease.
Advice: monitor any symptoms or changes
Experience: does get better. Taste buds recover; bladder, bowels and stomach settle down from the invasion, different food, loss of appetite. Brain takes time to clear and let go of the ordeal. However, when not improving, be brave, telephone the hospital or GP and insist on clarification. Had infuriating call with an endocrinologist wanting to change tablets. Fog brain could not understand mg size versus how many tablets. GP drew a simple map.
Staffing reality: clinical psychologist working in the hospital system points out that medical staff are redefining what realistically they can attend to in hospitals. “Mental health is so badly underfunded, emotional and mental health reactions that research clearly shows affect the course and outcome of medical illness and treatment, are under-assessed and undertreated,” she said.
“Recently in public mental health, there is recognition of the value of peer support by those who have had ‘lived experience’ of mental illness, and a conscientious effort over the past 12-36 months to increase the numbers of paid peer support workers to provide support to patients with mental illness.
“Yes of course, through talking about one's subjective experience with someone who can listen and empathise, allows you to process, understand and move on. Feeling alone with it all, like you have to button up, be stoic and put up is a recipe for feeling emotionally bad. The ideal process is to allow yourself to have the feelings, finding the support and space to process them, then move towards education and support to optimise recovery. Validation, acceptance and growth: good approach”, the Melbourne-based psychologist said.
Still don’t understand changed attitudes – never wore black clothes, now not fussed. Recalibrating daily how much I can do – aka how little. Eating less to keep off weight lost in hospital, a positive. Still cannot taste some foods or drinks. Still losing words, little memory of what happened, relying on husband to explain.
Wear a medic alert bracelet, endocrinologist advised strongly. No way! Realised some polios were wearing personal alarms on both wrists, so natty bracelet was nothing. Spent ages on phone with MedicAlert Foundation Australia advisor for wording on the wrist plaque to include Addison’s Disease and Post-Polio Syndrome. Anyone picking me off the pavement is unlikely to know about either but complying.
Meantime, new hip is painless – am swimming, driving, scooting dogs again. The experience was meant to be endured and shared to help others. All is not lost.