Pre-op Assessment - I should have written a list!

[phia]

I've had my pre-op assessment for debaulking in 3 weeks time and of course I am now thinking of the questions I should have asked! Here's one of them - can anyone help? When I first saw the surgeon, she mentioned something about an epidural and advised me to have one, but does anyone know at what stage this is done? Has anyone else had one for post op pain? Thank you in advance! Love Phia x

[Aurelie]

Hi Phia, I had an epidural - it was the best thing ever! When I came round after surgery it was already in place; I was pain free, no nausea and the whole experience was much better than I anticipated, so your surgeon has given you very good advice. Best of luck and hope all goes well with you.

Jill x

[Emalou71]

Hi, I had the epidural when i had my op the anethatis prepared the line just before I was put out. It felt a little strange when he was doing it but it was painless and when I woke I was pain free, they kept it in for 4 days and then I moved to oral painkillers I believe that is what aided my recovery not being in discomfort. I wish you well & a good recovery xxxx

[doodoolatrice]

Hi, I had an epidural as well and it really helped. I was really sick after my op because they removed part of my bowel so i didn't have any discomfort when I was being sick. They gave me the epidural just before the anaesthetic, it was painless and totally relaxed me. Good luck xx

[ScottishMisty]

I have to say that I wouldn't have it again personally. I had one and two hrs post op I was screaming my head off almost climbing the walls astute wasn't working and it was night shift on the ward. No staff available and I had to endure an hour if pain that I will never want to experience again. When the anaesthetist arrived he couldn't get it back in n at all and I eventually got a morphine pump. Honestly it's totally up to you as I know mine was on one off. Good luck!

[maz54]

Hi - coming from a nurses and patients perspective it's the ideal scenario for pain relief for abdominal surgery. The anaesthetist will discuss the pros and cons with you before your op so you can make an informed decision - invariably it'll be put in whilst your asleep.

As a patient I found it an excellent form of pain relief; you'll have a catheter to drain the urine from your bladder as it takes away sensation below the waist as it were but there should be a designated pain team who'll review you regularly and help with any questions you may have. Hope this helps xxxx

[BJ_UK in reply to maz54]

Actually, it's pretty clear from the responses here that I was not the only one who had their epidural put in while they were still awake. I guess it varies from centre to centre.

[Gina555]

Hi, I was told there is less blood loss during surgery if you have an epidural, so they recommend it.

[Whippit]

Hi Phia

Good luck with your surgery. It's five years since I had a TAH and it's all so different today. I was talking to a nurse manager just this morning who said most procedures are done laparoscopically. I don't think I had an epidural. I had a morphine pump but didn't need it. The only real pain I remember was from wind because they use oxygen? as part of the procedure and it seems to get right up under your arms as well as in your abdomen. I was told the only way to get rid of that was to walk and that proved to be 100% true. As soon as I could get out of bed, get dressed and walk round the hospital it was sooooo much better.

I remember walking to the staff canteen along quite a long corridor. The walking got rid of that trapped wind and I felt like a balloon deflating having been blown up and then tossed up in the air.

Things are so different these days. I'd probably take the advice of your surgeons they have the latest on pain relief. It's worth checking what happens if you have an experience like Scottish Misty and something comes adrift with your pain relief.

I hope all goes well. You sound very well organised. xx Annie

[antheamary]

I have had 2 operations both using epidurals for pain relief. I am sorry to say they just don't work for me. I woke up both times in incredible pain.

[Jarpy]

I had an epidural and it managed the pain very well, no nausea. It was kept in for a couple of days post op. I found the loss of sensation below the waste a little peculiar & my legs were swollen which made moving about awkward (they like you to get mobile very quickly after survey, ie next day). Morphine replaced the epidural but I only had one dose of that and then oral pain meds + another that was inserted in bum (sounds awful but really helped with targeting localised pain). Worst pain was gas build up and the only way I found to get that out was to move around as much as possible. I had only one morning when I was very distressed with the pain and told ' that will be the gas'. Good luck x

[BJ_UK]

I had an epidural immediately before my op.

The epidural was extremely good at controlling my post op pain, but unfortunately they breached the dura putting mine in, and as a result I ended up with several unwanted side effects. They told me at the time that they had breached the dura, and said that I might get a really bad headache as a result, and if so I should ask to have the anaesthetist come to check me over. Unfortunately, a really bad headache was about the only symptom I didn't have!

The first side effect I had was uncontrollable vomiting for roughly the first 24 hours after I woke up from the general anaesthetic. I have had many other general anaesthetics and have never vomited after any of the others.

The second side effect was that from the day after the operation I had difficulty with my hearing, which is normally very good. Everything sounded muffled. I told this to every nurse and doctor I saw - had to have them repeat virtually everything they said - but the response was that it was nothing to do with the operation and I should see my GP once I was out of hospital. My husband therefore made me an appointment for a couple of weeks time. This side effect lasted for several weeks.

I had my op on a Tuesday. On the Friday I woke up feeling awful - light-headed and really wiped out whenever I tried to sit or stand. In hindsight, I think that this was the closest I came to the really bad headache they told me I might get, but I experienced it as general illness rather than headache. I had hoped to be able to go home that day, but they insisted I stay in hospital another day because I was feeling so unwell.

Saturday I went home, and was glad to be home until the following Sunday, 11 days post op, when I woke up seeing double very, very badly indeed. I called the hospital ward for advice, but guess what - they said it was nothing to do with the operation and I should see my GP. I therefore called the out of hours GP service and spoke to a kind GP who said that he wasn't sure whether I needed to see an ophthalmologist first or a neurologist, but he would ring round and ring me back with a plan for what to do next within the hour. A quarter of an hour later he rang back and said that the emergency eye service would see me first, and refer me to neurology if they felt it appropriate. I should therefore go to the emergency eye clinic at the hospital where I had the operation.

I saw the ophthalmologist, who said that I had a very severe sixth cranial nerve palsy and that I didn't have any of the risk factors that they normally saw in people with this problem. He referred me to neurology, who admitted me. They said that I needed an MRI of my head as soon as possible, and that I would get it faster as an inpatient. However, as there was no chance that it would happen that day, and I had the appointment to get the histology results and find out for sure whether or not I had cancer at 9 the following morning, they said I could go home that night and return to the ward as soon as I had finished my appointment.

As they let me go home that night, I had an opportunity to google causes of sixth cranial nerve palsy, and guess what - this condition could result from a breached dura, also known as a dural tap. The following day I pointed out to the neurologists that I had had a breached dura and that went straight to the top of their list of possible causes. (It was in my notes, but hadn't been at all obvious.) They still had to rule out lots of other possibilities, such as metastasis of the cancer, but dural tap was definitely the favourite. When I finally had the MRI a week later - they kept me in longer for the sixth cranial nerve palsy than for the operation - it did indeed show that I had recently suffered from reduced intracranial pressure, which made it extremely likely that the breached dura was the cause of the palsy.

Unfortunately, my eye only recovered from the palsy extremely slowly and incompletely. I had to keep my right eye masked for over two months, as otherwise it was like suffering from permanent and extremely disabling seasickness. I totally lost any sense of depth perception, so I couldn't even pour myself a drink or cross a road by myself. It wasn't until mid-January (op was mid-October) that my eye improved to the point where they could correct the double vision with extremely strong prisms. The eye did continue to improve slowly for the next year and a half, but never made it back to the point where I didn't need prisms. Two and a half years after my cancer op I had an operation to rebalance the muscles of my eyes so that I wouldn't need prisms. This worked pretty well, though my right eye does still sometimes get a bit wobbly when I'm very tired or when I first wake up.

The sixth cranial nerve palsy made my recovery from the operation much, much more difficult than it would otherwise have been, as it took away or severely reduced my ability to do any of my favourite pastimes and meant that I was restricted to the house unless accompanied.

The worst of it is that if the medical staff had paid attention to all the early side effects I had, such as the difficulties hearing and the posturally related feelings of illness, there was a treatment that they could have given me (a "blood patch") which might well have prevented the sixth cranial nerve palsy. As it was, they just kept denying that any of my symptoms were in any way related to the operation.

What I think you should take away from this sorry tale is not that you should necessarily avoid having an epidural, as epidurals do on the whole provide very good pain relief. Just be aware of possible side effects in addition to the horrible headache which is the only one they are likely to warn you about and insist that you are reviewed promptly by an anaesthetist if you have any of them!

Good luck with your op!

Barbara

[Cre27]

I had my op in March this year. I wasn't given an epidural but had 2 rectus sheath catheters inserted during surgery. All I can say after almost 5 hours of surgery the pain I endured was minimal. Pain relief was injected through these every 8 hours until no longer needed. I was also given a morphine pump overnight following the op then onto oral medication. Once the urinary catheter was removed I was up and able to walk around. Getting in and out of bed was the most painful! Good luck And all the bestxx

[Sunfleury-UK]

Lots of different experiences above! I had an epidural put in whilst in the anaesthetists room just before op. It was a procedure I was quite anxious about and the anaesthetist was aware of this. He gave me a light sedative beforehand and was very kind in making sure I was relaxed and supported. Mine was quite short acting and additionally I had a morphine pump for the first day and both did what they needed to without side-effects. It's really important that pain is managed well and I think there are quite a few options available.

The anaesthetist will come round to see you before the op and they are the person to discuss your personal situation, concerns etc with. Although on paper we've mostly had the 'same' op, there are different circumstances, priorities, pain thresholds and other health issues for us as individuals as well as having different histories with reactions to medications etc.

I would suggest writing a list of questions and thinking about your priorities so that you can go through these with the anaesthetist beforehand.

Wishing you strength and hope, Sxx

[phia]

Thank you Clare. I'm allergic to morphine; everyone talks about the relief it gives, but what is the alternative for people like me? Thank you. Phia x

[Juejue]

Hi , I had an epidural during surgery it was at the top of my incision in my front , two tiny tubes with a pump pain relief which I kept for the first two days , I thought it was amazing , I would definately recommend any pain relief they offer , it is abig operation and being pain free and able to be mobile ASAP is important to your recovery , I managed to get out of bed 24 hrs after as I was put on an accelerated recovery plan , something they are using more now , to prevent complications . It really isn't as bad as you think it is , good luck for optimal debulking . Jue

[valeriel]

I am one of the ones who had a very successful epidural. It was put in my back as I sat on the bed prior to going into theatre. I didn't feel a thing when they did it and certainly was pain free during recovery. The hardest bit was when they removed it. I had some pain and they couldn't find a doctor to prescribe the morphine at night at a weekend! However, this pain bit only lasted about 12 hours and then I was fine. I wasn't really given a choice but by that stage I didn't mind and would have done anything that might help them remove the tumour. Good luck with your surgery. Love Val x

[phia in reply to valeriel]

Thank you Val, after all the positive replies, I am now much more clued up about almost everything to do with the epidural, and will definitely be having one! x

[Aurelie]

Hi Phia, I made it very clear to the anaesthetist during my pre-op assessment, that I wanted to avoid post op vomiting as it would definitely send me into AF (atrial fibrillation), so was given Fentanyl - which worked brilliantly for me. Trapped wind was painful, so drank a lot of peppermint tea; luckily, had taken plenty of teabags with me. The nurses also gave me peppermint water, which helped more than the tea, but seemed to be in short supply! The catheter gave me no problems at all. I didn't feel the epidural being put in - just a lot of tapping on my back, and no discomfort when it was removed. Sending best wishes that all goes well. Jill xx

[phia in reply to Aurelie]

Than you Jill, that's really helpful. Phia x

[Maus123]

I had my debulking op in Germany. Because I'm a self-confessed chicken in all things medical, I received a sedative before the operation and general sedation for the actual surgery.. no epidural. Woke up and felt great.. I mean.. positively pain free, buzzing even. Saw the clock in the wake-up room which indicated the op was long so assumed was successful to some degree at least and nurse told me I didn't need a stoma. Felt 'light' and relieved.. sent SMS to family and friends saying I'm fine. Have to say that I do tend to not have any issues following a general sedation so all was as expected. No pain because of the op medication was still in effect, I think.

This was a full debulking laparotomy, a long incision from below breast to pubic mount, 52 staples, all reproductive organs , gall bladder, omentum/peritoneum and appendix removed.

Over the next days, the elation wore off and I experienced some pain but it happened mostly in the early morning hours and was generally not bad and very manageable with help of an opiate 'pain pump' for the first few days in combination with paracetamol via IV, followed by Novalgin (a medium strength pain relief medicine popular in Germany) for a few more days and then dropping to Ibuprofens only before I was released on day 10. At no point did the wound pain exceed what I'd call a 6/10 or maybe 7/10 level (imaging bad period cramps.. something like that) the few times it spiked, and keep in mind I'm very pain sensitive. So in reality that probably was a 4/10 and it was usually quickly reduced via IV meds. Most important: Don't be a hero. Whinge right away when you have any pain because it is much easier to keep it suppressed on a good base level then get it under control after it's run wild for a while.

When they asked me what the current pain level was I had to actually concentrate and listen into myself to determine a number, which tells you it really wasn't bad. Else I would have been screaming bloody murder.

Now the one thing that did hurt was not the actual op or wound but the urethane stents they put in on the day prior to surgery, with a minimum of local anaesthesia only. There was some real pain while they were inserted... and it felt like I had a severe bladder infection from the time they put it in until it was removed again, the day after surgery. Also had dark red urine for quite a few days due to those stents. I caused a real ruckus about needing better pain prevention for removing them again so the director of urology came and was very very gentle this time. Other women report having no issues with those kind of stents and I don't know if they are even applied for debulking surgery in the UK. But I can absolutely do without those in my future (understand they were put in to prevent the urether getting damaged during surgery).

Other than that, my biggest challenge after surgery was to get my bowels working again and not becoming too nauseated from taking the various oral medication. Peppermint tea to address wind was fine, but actually producing poo while not being given proper food (clear broth and a hard biscuit called zwieback was all I was given.. brrrr) and on opiates proved a real challenge. Eventually, it started working again after coming off opiates, walking about for a little while every day and having consumed additional 'illegal' chow (courtesy of my family who brought me soft pretzels, prunes and fruit whey drinks and a pact with the food nurse who slipped me nice 'light' rice puddings, tinned fruits, frozen juice lollies,mash with gravy etc ). I ended up taking very little of the oral meds (none, other than ibuprofen in the end, to be honest) and having pain relief, anti-emetics or anything else that was deemed absolutely critical administered via IV.

Once the various tubes were out e.g. pain pump, saltine IV, drainage, catheter (none of which hurts.. they're just an annoyance because they limit mobility), life was good. It took 8 days all in all to get there, with staples being removed on days 9 and 10, and I can say that I was ready to go home from day 7 or 8.

You'll be fine. Just remember to shout about any issues or pain right away and have your family stand by to help with extra 'room service' if needed (just careful that it's not something you are absolutely not allowed to have like additional medication.. ask a sympathetic nurse if in doubt). No need to bring a lot of clothing. I found the hospital gowns did fine and they're easy to change. Maybe an extra pillow and a pair of slippers (German hospital protocols are anal about patients not being up and about without slippers on), and a bathrobe if that's not provided in the hospital. Oh, and a phone or Kindle charger .

I wouldn't insist on going home very early either. Just try to relax and make use of the ready response to any questions or aches which is available in a hospital.

Fingers crossed for a good result for you!

[phia]

Thank you Maus, I haven't heard of the 'stents' the day before operations, so I guess we don't have these. Really useful information in your reply, thank you very much. Best wishes, Phia.

[thesilent1]

Hi, I had one and it does work. Don't worry though as your anaesthetist will come to see you on the day you are admitted and will discuss the various types of anaesthesia with you.

Best wishes for your surgery. Ann x