I am due to have surgery (ACL reconstruction) for the first time in a couple of months, and I am starting to get really anxious. I have stayed in hospital a couple of times before, but I’ve never had a general anaesthetic or surgery before, and I haven’t been able to find out much of what to expect - my GP said I would be told at my pre-op, but at my pre-op I was told that everything would be fully explained on the day of my surgery. As you can imagine, that’s not a very comforting prospect for someone who suffers from anxiety - I like to know everything to expect in advance so that I can plan my ways of coping and ask for reasonable adjustments where necessary.
Given the above I am now really quite concerned that I will end up in a state of panic on the day of my surgery, simply because too much information is thrown at me on the day, and then my surgery won’t go ahead as planned. This would be terribly upsetting for me as I have waited since July 2017 for the surgery as is, and I will have 12 months recovery following it.
Therefore, could anyone possibly give me advice regarding what to expect when having (NHS) surgery followed by a hospital stay, and any advice regarding what problems my autism may cause during the experience? Also, I would welcome any tips for managing anxiety and communicating my needs (given my autism) whilst I’m in hospital.
I like to be prepared too. I research a lot to give myself as much information and as few surprises as possible. If you google I noticed there is a Bupa and often NHS information so you may be able to find out about your specific operation there. I had a knee arthroscopy which was under general anaesthetic basically washing out loose particles. I have been in hospital many times for numerous examinations. It is usual to have information through the post and sometimes a pre op consultation. If you are worried about parking and finding where to go you could do a dummy run on another day prior to when you need to be there. Quite often there is a lot of waiting, people coming and going, different lights and sounds also quite often hot. So take with you whatever is required in the information; a list of prescriptions, something to occupy you and something to listen to which is easy to carry round ( music, knitting, puzzles, audio, meditation or breathing exercises whatever calms and absorbs you). Also I take a toilet bag with things to make me comfortable before and after the op ( sponge or toothbrush etc) also headphones and whatever sensory aids you use ( shades or silk scarf or whatever) some people wear their own slippers . As the hospital gowns are a bit odd some people wear a dressing gown over them which is a good idea. You will go into the reception area of the department you are attending. Then you may wait for someone to collect you. During the pre op you will most likely have your blood pressure taken, you might be weighed, you will fill in or sign agreements for the procedure. They will check your name, date of birth, next of kin , home address , whether someone will be with you to take you home and have someone with you that night as I imagine you’ll be on the day unit and go home the same day ( but it will say in the information you receive ( if overnight again be prepared ). They will put an identity band round your wrist. They will ask if you have any allergies if you have these will also be put on another band round your wrist You may be in a side ward with others waiting for an operation. You will be asked to change into a hospital gown. You may be asked to take pre op meds before going down to theatre. You may walk or be wheeled down. Someone will be with you at all times. Once in the pre op area you will be laid on a gurney. They will go through all the questions again.. name date of birth allergies etc They will want to know if you know if you have any adverse reactions to medication or anaesthetic or if you have acid reflux They will most likely put a cannula in the back of your hand. Then through the cannula they will insert medication which feels cold as it goes in but they ask you to count and in seconds you will be asleep You don’t know anything else until you start to come round in the post op room. You will not leave there until they are sure you are ok. Once awake they will wheel you back to the ward. You will be given plenty of recovery time. If it is a day ward they will not let you leave until you have had a drink perhaps toast or biscuit and been to the loo. Other people before and after you on the list will also return to the ward and be in recovery too. Before you leave there will be more paperwork to sign and they will make sure you have any necessary prescriptions. This last bit can take quite a while too. Whoever collects you can bring a wheelchair up to the ward ( sometimes near the entrance often coin slot operated) to wheel you down to your transport or sometimes you will be wheeled off the ward to a collection waiting room. I have found the staff at my local hospital kind and patient. I would make sure they know beforehand and on the day that you have asd and may react differently to things . Everyone, as we all know, are very different ; I personally react badly to anaesthetic so feel queasy and it takes me about a week to get over such an event .. this is partly from having anaesthetic but also my bodies reaction to being in hospital and having invasive treatment . Then of course there will most likely be pain from the area of the operation, in this case your knee. It is likely that your knee will be multicoloured from bruising but you will have dressings on to start with. As it’s your knee they may have asked you to do physio to build muscle tone prior to your op and most likely a physio will see you before you leave the hospital to show you post op stretches. Hope I haven’t written information overload and your and others experiences may well be different .
Thank you Misfit61. I have indeed researched as much as I can in order to prepare myself - I know exactly what the surgery itself and the recovery afterwards involve, I am familiar with the hospital, I have a copy of the questions that I will be asked upon admission, I have found myself a number of prehab exercises to do prior to my surgery etc. - but I have found little in the way of information regarding what actually happens step by step whilst in the hospital on the day of surgery (which is the bit that I am most anxious about, as opposed to the surgery itself because I will be unaware of the procedure happening of course given the anaesthetic). Therefore, your descriptions of what happened in your experiences are most helpful indeed - they certainly give me better idea of what to expect, and as such how I may cope with those events.
My Surgeon and the surgical admissions staff are aware of my ASD, and I have requested a private side room to be in before my surgery if possible, but do you think I will have to separately tell the ward staff following my surgery about my ASD? I’m quite a fussy eater, and I can struggle to communicate my needs when I’m really anxious, so I’m not sure how that will go down...
I think the information about your asd will be on your notes but I’m sure they would add a note about your eating sensitivities if you asked them too. You could perhaps take some snacks you know you are ok with. Follow the no food and drink instructions precisely. I reread your initial post and realise it said you will be staying .. most of what I said will still apply. On some wards you can get a media card so that you can watch tv ( it’s a top up type card) . But I would say take things you know usually help you to feel calm, occupied and comfortable. I do agree that it’s helpful to have step by step guidelines. Even when I went for the asd assessment I would have liked this but not available. If possible I like knowing what they look like too but that’s not possible apart from the surgeon. Oh and the anesthetist usually speaks to you on the ward in advance too. ( sorry keep remembering bits and pieces). Hope all goes well.
Ooh, good idea about the snacks. I should only be on the ward a couple of days (apparently), so hopefully I will cope okay. That makes sense that the anaesthetist sees you before the surgery.
The nature of my anxiety means that I like to know everything I can about things before they happen. I think in particular with regards to seeing medical professionals I get quite particular about things as I have had bad experiences in the past and I have been blatantly lied to by doctors in the past, which has really created a sense of distrust for me.
Thank you very much for your advice, now to form an action plan in true Aspie fashion!