Severe anxiety about surgery - what to do?

[shovetheholly]

FIL has severe mobility issues around an osteoarthritic knee. It's been steadily getting worse for 10 years and is now ridiculously bad. He has to walk almost doubled over, like a crab, and this is causing secondary back issues (including a broken vertebra). His mobility is absolutely terrible and he is in constant pain. He flat refuses to get a blue badge or a mobility scooter. His condition is having a dreadful effect on MIL's life, both practically and emotionally.

He is due to have a knee replacement done next week. Problem is that he's absolutely abjectly terrified of surgery. An op was scheduled a couple of years ago, and he pulled out at the last minute. He is a very controlling person, and we think the real fear is the general anaesthetic. We're currently a week away from the date of this one, and he's in a terrible state. I can only describe it as panic and near-shutdown. DH, BIL and I fear the same thing will happen again.

There is no history in the family of anything going wrong with an op. I can't emphasize enough how extreme his fear is - this isn't just a few jitters about surgery, but a full-on meltdown. He's an anxious/depressive person at the best of times, and never the bravest, but this really is sending him over the edge.

Does anyone have experience of this? What can we do??

If it is really only the anaesthetic that he's worried about, then he could have the OP done under epidural - but he'd need to talk to someone about this before hand.
If he won't go through with it though I suggest you concentrate your efforts on emancipating your MiL.

If you can get him on the operating table the rest should resolve itself. I have severe anxiety and they offered me diazepam before hand then talked themselves out of it as it would have impeded my recovery. I got in to have my anaesthetic, panicked as soon as the mask went over my face and next thing I know I'm out. They sped the whole process up lol some times the calm approach is the worst for patients and a more bish bash bosh one required

Knee replacements aren't usually done under general anaesthetic. They are most commonly done with a spinal anaesthetic, with or without some sedation. Although there is a possibility that your FILs spine problems may make this more difficult. But it is perfectly common to have your knee replaced and being wide awake and chatting to the theatre staff, if it's only the anaesthetic he is worried about.

We haven't seen the doctors, but he and MIL seem convinced that it has to be a general. I can't see why - I suspect that, if the surgeons knew the truth about how he feels, they would do it under a local?? But I'm no expert on this. I will get DH to talk to MIL and press on this.

He's also worried that the op will leave him in constant pain. He read a couple of stories on the internet (!!) about how some people found it didn't help them, and despite being a total Richard Dawkins-style rationalist in other areas now has convinced himself that this will be the case for him. No amount of pointing out that the NHS would be unlikely to do this very common operation on so many people if it didn't benefit the majority seems to work to convince him otherwise.

Does anyone know if there are psychological therapies that can help? I appreciate it's 11th hour stuff, but would CBT help?

Knee replacements are done under either general or spinal anaesthetic. His back may make a spinal difficult / impossible but if he can curl forwards (which it sounds like he can) then it would be worth trying it.

Spinal anaesthesia is very straightforward and he can be as awake or sedated as he'd like to be. He would feel pressure, movement and vibration but no pain. He wouldn't be able to move his legs until the spinal had worn off.

General anaesthesia is also pretty straightforward as long as he doesn't have any major medical issues. They're very safe these days (you're more at risk of a car crash on the way to hospital than you are of something going "wrong" during the anaesthetic). Everything is monitored - heart, blood pressure, pulse, lungs, oxygen levels, brainwaves - to keep patients as safe as possible.

Pain afterwards is an issue for knee replacements. They're a painful operation to have, unlike hips which seem to be better tolerated. I would suggest you tell him to ask if he can have a PCA (stands for patient controlled analgesia and is a button controlled bag of morphine attached to his drip) and if not, ask what they are going to do for his pain post op.

It's a bit late for CBT etc but they can definitely prescribe sedation on the day if that's what it takes to get him into theatre.

As PP have said, a spinal anaesthetic is the most common type of anaesthetic for this operation.
He could ask to speak to an anaesthetist before hand?
He's in constant pain now from what you've said!

That's super helpful, thank you all so much. I'm going to get DH to call MIL and explain about the spinal option. He can curl over no problem - in fact he is hunched over the whole time.

I have had a lot of general anaesthetics myself, and I know how safe they are these days! I've tried to explain that, but to no avail.

I think it's important to stress that we're not dealing with normal, natural pre-op nerves here. No-one likes having surgery do they? But this is different - this is some kind of severe psychological phobia of death on the operating table. FIL is very controlling (e.g. won't go on aeroplanes, hates being driven by other people) and it's all about that loss of control I think.

I will mention the pain control as well - I think that will help him out.

Pre-op is this week, so I will try to get DH to ensure these things are mentioned then. Is that the right place to ask?

My aunt was an anaesthetist and definitely dealt with many people who were terrified. I would make the hospital aware of his fear (and the level of it) and they might be able to help. My aunt would go in early on a day she was dealing with someone who was particularly scared just to talk it through with them. Perhaps an appointment could be arranged so he could talk everything through and have whatever options there are explained. E.g. does it have to be a general, could he be given something to calm him before the operation etc.

Definitely preop is the place to mention it.

I do get that you are talking about severe anxiety rather than usual preop nerves. I'm an anaesthetist, I deal with it at least once a week. "Usual nerves" I deal with daily :)

The loss of control is often cited as the reason. Sometimes preop sedation helps, sometimes staying wide awake helps. Sometimes nothing helps, and then it's up to the patient to decide if they can get themselves through surgery somehow, or whether their current level of struggle is easier to cope with than surgery (as it sounds like happened when he was listed the first time).

Sounds like your FiL is in pain 24/7 and having his life severely affected by his knee, so I hope he can find a way to get through it!

hic - It's comforting to hear first-hand how common this is. I keep telling him how expert anaesthetists are. How people like you deal daily with really complicated cases and can calculate - for example - exactly how much anaesthetic an obese, elderly woman with a stent, diabetes and an alcohol problem requires. He sort of understands rationally, but it doesn't touch the sides of the anxiety. Apparently he's just sitting in a corner staring at the wall for day after day after day.

Some kind of appointment to discuss the anxiety would be a good idea. I will try to get them to explore that. I fear that part of the issue is that PIL are not being honest with the hospital staff about the severity of the nerves, so no-one is able to help them.

I will mention sedation too, thank you. (I think this might be an issue because of lack of control, though FIL can hold his drink so if it's presented as 'just like a beery session' this may allay it).

Is he an obese elderly woman with a stent, diabetes and alcohol problem? If not then he doesn't have to worry 😉

Most people need more or less the same amount of anaesthetic agent. I do turn it down if the brain waves look too sleepy, but there's not much calculating required. The infusion pumps all have built in (very complicated!) protocols which work out how much to give based on age, weight & which drug it is. Alcohol tolerance doesn't normally make much of a difference and being diabetic makes no difference at all (although we strongly recommend good glucose control leading up to surgery as it improves wound healing & reduces post op infection risk).

It does sound as though he should think about the idea of the spinal though. We don't have to switch the brain off at all, so he can feel more in control. Preop sedation makes you feel drunk and dozy, which he may or may not be so keen on.

I had surgery last year and I was a mess. I went to the GP who gave me diazepam and during my pre-op I begged to be kept awake with an epidural (it was the lack of control under general anaesthetic that was terrifying me). However they brought in an anaesthetist to speak to me and he said it would be safer to knock me out completely and I figured he knows best. They sedated me as soon as I arrived at the hospital, like someone else said it was like being completely drunk. I was still a bit panicky just before going in but if you make them well aware of how severe the anxiety is, they will be brilliant. It really helped and because I had such a good experience, I will be less worried if I ever need further surgery.

hic - You guys do an amazing job. Thanks for that, and for the advice! Can I ask another (unrelated) question - who makes the decision with very elderly/frail people about whether to operate or not? Is it the anesthetist or the surgeon? Or can it be either? I ask because I know of a couple of cases where older people in their 80s have been told it's not worth having an op - I'm sure sensibly - but I've always wondered whether the issue is recovery or actual ability to tolerate the duration of the surgery??

toogood - FIL has never had a general anaesthetic. I find this strange, because there's such a history of cancer in my family that everyone has had an op! I think you are right that, if he just went through it, it would be a rubicon crossed and it would relax him a bit more in future. However, for the purposes of just getting him through, the spinal option sounds more promising.

I'd say it's both. They're looking at risk factor from two separate angles and either could say not fit for surgery but that's just my opinion/experience of surgery.
Both the surgeon and anaesthetist had to examine pre op.

My pre op drugs were amazing and I lay in bed shouting 'I've never felt this good in my LIFE!' While my family all stood around my bed with worried faces while I was wheeled off for neurosurgery
Christ knows what they gave me but it was good shit and I was convinced my anaesthetist was a well known doctor off the TV.
He was actually a completely different ethnic background size and shape but it was real in my head.

wicks - I laughed so hard. I'm glad they gave you their best drugs! Neurosurgery sounds serious though, hope you're now recovering.

I was such a mess when I went in for my first mastectomy that I fainted on the way to admissions. When I came round I was on a trolley and couldn't stop crying. Trying to leave. They fast tracked me into the anaesthetic bay and gave me something which I think was called medazeline(sp?) which calmed me right down and had me complimenting the beauty of the OR lights!

I still get upset before surgeries now (at the end of this month I'll be having my ninth), but not nearly as much and the medazeline always helps!

The patient controlled morphine driver is a bloody life saver too!

Definitely discuss the spinal anaesthesia option. If suitable for a spinal, your FIL can have it with or without sedation. He'll have a line in anyway, as spinals and epidurals lower your BP. I remember how nauseous I felt when my spinal (for ORIF on my ankle) first went in, before the anaesthetist put more fluid in.

Anyway, if your FIL opts for no sedation - I did, cause I'm a control freak too - he may find it helpful to take an mp3 player and earphones into theatre and listen to some favourite music, or an audio book, to listen to, to help relax him. I listened to music throughout my op to keep me calm. Or he may just prefer to chat to the theatre staff, who will keep him reassured.

Also bear in mind that he'll probably be tilted onto the side of his to-be-operated-on knee so that the anaesthesia will completely numb that leg, whereas the other leg may have a trace of feeling in it. What this means is that your FIL may experience any operating feelings in his other, non affected knee as his brain projects them onto it. This happened to me, and is the oddest feeling! I even asked the surgeon if she were definitely operating on the correct ankle! I just thought I'd mention it as nobody thinks to tell you these things beforehand, at least noone warned me about it.

An advantage of having a spinal w/o sedation is that you return to the ward all alert and can have a cuppa and snack right away if you feel like it, without any waiting for post GA grogginess to wear off.

Anyway, good luck to your FIL in deciding what his favoured, most suitable anaesthetic option is, and hope his surgery goes well, and he recovers swiftly.

wherethefuck - 9 surgeries!? You're a soldier. I hope your next one goes as smoothly as is possible and that you get plenty of whatever they gave wicks

liz - thanks for the info about the phantom pain - I possibly won't pass that on this second, as I think it might make it worse right now if he thinks he'll feel anything at all. I'm sure that, if he's awake, the operating staff will be able to talk him through it.

Thank you shove, I'm hoping for only maybe two, three at most after this one. I'm getting quite used to the morphine but the smell of hospital food now makes me wretch 😫

But I really hope all goes well for your FIL and you can all get him in there!

Ok I was petrified - had never had a GA and pretty much said no and went to walk out
They got me into the anaesthetic room bit where I had a massive panic attack and cried a lot. The lovely anaesthetist persuaded me since I had a canula in could she give me something to relax me, I said yes and asked for anti sickness too

I think it was midazolam, I started laughing, felt drunk and then woke up after surgery. No counting, no knowledge of the anaesthetic at all. I was discharged an hour after with no sickness or side effects apart from being wide awake for a few days

My fears were not surviving the surgery, being sick (phobic) and waking up with a tube in my throat. None of which happened! I would happily have a GA again but I would ask for anti sickness and pre meds

Bloody hell, that's a lot to deal with whereis. Physically, mentally and emotionally. Love to you and your family.

hollinhurst - I'm starting to think I need some of this sedative, let alone FIL! Seriously, that's helpful advice, I will pass it on.

Could he see a hypnotherapist? They are excellent for this type of thing including dentist fear.

It sounds like he could do with a lot more proper info on the op - talking to the relevant people at the hospital. I've had generals before but I'm sitting here stressing at the thought of your FIL's! If I had to do the whole waiting game now I'd be a huge bag of nerves and might well be cancelling too. Knowledge helps a lot. A lot of the time it's fear of the unknown. And the rest is just the anxiety feeding on itself. The hypnotherapist idea is a good one if you can get an appointment quick enough. But try and get him to the hospital for a chat. I feel for him!

katy - the strange thing is, he's a very scientifically-minded person. He prides himself in being 'factual' and is not behind hand for criticising anyone who disagrees with him as irrational and unscientific. He understands the operation in some detail, it's just that there is this phobic element where he really thinks something catastrophic is going to happen, despite knowing how unlikely that is at a rational level. To give some background, he is a very anxious, catastrophizing person at the best of times - he tends to chunter around the worst case scenario even for a trip to the shops. He retired in his late 40s due to MH issues, though this was never properly addressed by the family or the medical system since he didn't need benefits/money due to having an inheritance to live off. He has been treated by the GP for mild depression/anxiety in the past, but that's it - the problem, I think, is quite a lot deeper than this, and had he been forced to continue to work, this would probably have emerged into the light more.

Hypnotherapy might be a plan! Does it work??

Having a chat still might help though because there will be 'official' people telling him that his fears are unfounded. I can tell myself that something is really unlikely to happen but there's still a voice going 'ah yes but it could' and that amplifies further in my head to 'it really could' and worse. Having another proper voice telling him it won't might make a difference?
I'm considering hypnotherapy and people do say it's great for overcoming different issues. Got to be worth a shot with this level of anxiety because it's a horrible feeling and it won't get better on its own.