morphine/other pain relief after amputation

[cate6]

From memory (my friends call me a memory freak so I don't doubt this memory) I was on morphine for no more than six weeks after the original amputation. I recently heard a lady at the clinic say she'd been on morphine for over 30 years!
I'm just wondering how long you were all on the main pain relief following your surgery and if you have continued with some sort of pain relief due to the amputation (I have been lucky and not needed any).
I ask this as I was thinking I'd still be able to get out and about after surgery and be independent in my car but stupidly didn't realise you can't drive while on morphine.
Any experiences relating to this will be much appreciated

[ann-]

I had my accident over 40 yrs ago Cate, so things were done a bit different then. I think all they had was morphine which I got quickly used to and from what I was told later they had concerns, so was given a placebo, which obviously worked because when I was transferred to another hospital, on asking for my pain meds was promptly told I was not on anything, so that was it only about a month down the line from having both legs amp'd and awaiting a skin graft, you really just had to get on with it I was on a childrens ward and don't remember them giving out drugs to any of us, at the time it seemed hard but it did mean that like you Cate I've never had the need to be on anything permanently since then and its always too made me a bit wary of morphine or the like, because I do remember asking for more and more and the nightmares that went with it.

Anyhow, roll on forty years and I had to go in for a revision, first surgery I'd had in that time and had memories of before, so bit nervous of how it was going to be this time round but was almost pleasantly surprised as had an epidural alongside dihydrocodene and paracetomol, epidural was in for about four or five days, and by the time I went home at eight days had cut the codeine. Over the next couple of months I just took both when I needed it, though did ultimately cut the codeine and then took regular paracetomol, which did work, though alongside this I was using a relax night sock www.medi.de/en/patient/products/leg-prostheses/phantom-pain/medi-relax-night-care.html and for part of the time having fairly intensive physio (which is good pain relief) and walking practice. I think this was gradually cut after about six months or so, and nowadays I just take the odd paracetomol, sometimes codeine if I need it.

I didn't actually drive for about three months, partly because I opted for inpatient rehab and wasn't at home, but understand your concerns about the driving.

[cate6]

Thanks for that Ann. It's always good to hear experiences of others. I too was on a childrens ward (27 years ago) but I had the morphine drip where I could administer it myself, but I'm now wondering if it was a placebo too, I know it's easy to get addicted to morphine. Neither of my parents are still living so I can't ask their memories of my time in hospital and it's no use asking my siblings, although they are older than me they remember very little of my time in hospital, one brother remembers me being very ill for the first week, other than that they remember nothing on the medical side of things. I've been told I will only be in hospital a few days as long as pain is managed and my goal is to be medication free asap, I'm really eager to get off the Gabapentin, I've been on this since December and am suffereing side effects I will suffer terribly if I can't drive, I have people to chauffeur me but I want and need to drive myself, it's all down to independence I suppose!
I still don't have a date for surgery. I've waited 10 weeks so far and had all my pre op tests 4 weeks ago. I'm fed up now!

[ann-]

Not surprised you are getting fed up with the waiting Cate, I think that's the worse bit cause you are worrying and wondering and ten weeks is a long time.
Its strange isn't it of not knowing all the details of everything from those past years, sometimes I get asked questions now I can't really answer, my mum is in her 80's now, very clear on some things from then, but not others.

Do wish you all the best with your surgery, I know everyone likes to get out of hospital as quickly as poss, I was actually glad that where I was for my revision kept me in about eight days, I must be one of those weird people who don't mind hospitals, lol, the epidural was very good in controlling the pain and allowed me to chill and not have the worry of everyday stuff, so by the time I went home was relatively ok ...ish.

[cate6]

I don't mind hospitals to be honest but I think this time round (as my life has totally changed in the last few years) I want to be home sooner rather than later, but I'll go with the flow. I am aware that an epidural is a possibility but that hasn't been discussed yet.
I am going to the same hospital that I had the first amputation at (and other operations since then but not on leg) so my records from then should be available. I've told the consultant all I know from back then but there are gaps in the info mainly from things I didn't know rather than have forgotten so there was mention of getting my files recovered, they would make good reading I imagine! It is only recently my condition was confirmed. I actually worked it out myself about 10 years ago then I asked at the clinic if my records mentioned anything about my birth defect and it confirmed it was pffd. I'm 40 now and no one ever told me what it was, I'm sure my parents would have been told in the beginning but it was never mentioned to me. Not that it makes much difference, the cause is still unknown but giving it a name is a start.

It would be typical for me to get a call to go into hospital this week as I have just made plans to celebrate my birthday with friends, my life has been on hold since I found out about the surgery and this is the only thing I have planned, whereas in previous years I have so much planned...oh well, that is life

[ann-]

You know you can actually get access to read your files now Cate, if you wanted to. I did that quite a few years ago as I'd had shall we say 'discussions' over some of my prosthetic treatment, I think I paid about £10 and I was able to read my files sitting in an office I think where someone else was working to monitor what I was doing with them, but was able to pay for copies of individual pages.

Interestingly the bit of information of the periods I was looking for had mysteriously disappeared (never were found), funny that, but the records went back to the original accident, there were even some photographs I found them fascinating and quite therapeutic reading them, although there wasn't always the type of information I'd have expected to find, though suppose we are going back some time. Like you, although a different scenario, I'd been young and I think in those days things were not explained to children and its only really been in recent years that my mum has been able to talk about much of it to me, and I think some things she has forgotten now too.

Hope you have a lovely birthday this week and don't get 'the call' on the day you have got plans for, like you say 'would be typical', lol.

[cate6]

Hi Ann, I looked into getting copies of my hospital files but the price was estimated at £50, I don't have that much to spare at the moment. My clinic files (limb centre) I asked a few questions and my files were looked at and I was given some answers. I'm sure one day I will get copies but I imagine there will be gaps, not missing info as in your case which I think is shocking, but I think just lack of knowledge for my birth defect. I've accepted my 'disability', it's who I am and it's who I have always been but I think the 'why, what happened at conception?' question will always be there, hovering!

Thanks, I'm sure I'll have a great birthday, this time last year I was packing for a trip to Barcelona, wish it was this year! If I don't get a call from the hospital today I can relax for the rest of the week as I know surgery is on a Tuesday.

[greyhnd]

Hi Cate.
I'll toss in my experiences for whatever they might be worth. My first amputation in 2006 went smoothly and after a six day hospital stay I was sent home. I had oxycodone for pain relief, but chose to use ibuprofen instead unless the pain got unbearable. Thankfully, I didn't really need to use the oxy much since I have a high threshold for pain. I was driving myself around town within about a week.

I had my stump revision surgery in 2010 and I didn't worry that much about it. The post surgical pain was much worse and even though the surgeon gave me oxy again, I decided to use only ibuprofen again. Again, it seemed to do the trick and ended up tossing the oxy down the toilet. The funny thing is, I drove myself home from the hospital, against the surgeons wishes, but I told him I had no other way to get home.

After both surgeries I hit the physical therapy hard. I believe as Ann mentioned, it was kind of a pain killer by itself. I'm not sure about in the UK or other countries, but here I was encouraged to use a rolled up newspaper or magazine and smack the daylights out of my stump. I was also told to massage and handle my stump everyday. I think those two things also help with pain relief.

Hopefully no more surgeries will be required and my good leg will stay healthy. If for some reason I should lose it then I'm not sure what I'll do. I suppose cross that bridge if or when I ever come to it.

[cate6]

Hi, greyhnd, thanks for your reply. I 'think' I have a high threshold for pain too so your experience of pain relief is giving me hope, I'd like to think I could manage on ibuprofen and paracetamol, but it's not something you can guarantee until the time comes. I've been told I should be home in less than a week and my aim is to be driving asap. Along with the amputation I'm also having my stump straightened (broken and a plate put in) I can't imagine a procedure like that is any worse for pain than an amputation...here's hoping

[allenuk]

Strong codeine (prescription-level) got me through, although you have to watch those pesky side-effects, like constipation.

A

[greyhnd]

Allen - Isn't it odd how the meds we're given to help us most often have unpleasant side effects? Although I think I'd rather have constipation than the hershey squirts....lol.

Cate - I think having a high pain threshold is a good thing, except sometimes I also think it prevents me from seeking help as quickly as I should. Kind of like "well it doesn't hurt that bad, so I'll wait" kind of thought processes.

Do physical therapy people tell everyone to smack their stumps with newspapers and such? Or is that something unique to here in the US? It made a difference in the process of getting my stump tougher, but I rarely ever see anyone else mention it.

[allenuk]

'Ordinary' physiotherapists in the UK know nothing of stumps, or phantoms, etc.

The specialised physios, usually attached to our 'limb-fitting centres', are better, but their main interest is getting people up and walking, and I haven't come across any who see phantom pain problems as being in a physio's remit - they'd probably tell you to talk to your consultant (doctor) about them.

Shame, because obviously phantoms can really blight people's lives.

A

[stonecutter]

I'm one of those people who don't like being on pain meds at all. Morphine gives me bad drug dreams while I'm asleep and hallucinations while I'm awake. Tylenol 3s stop up the works... Put me in a dentist's chair and I can't get enough freezing though!

Having a high pain threshold means I can hold out for a long while and do other things to alleviate pain. But as it was pointed out to me last year when I had my surgery - I may have a high threshold, but my blood pressure rises and my blood oxygen dropped (because I took shallow breaths) when I was in pain. So the nurses and doctors could tell!

So there's a happy medium that needs to be achieved.

[cate6]

Hi all, I finally have a date for surgery, 9th April. I feel I can kind of relax for a few weeks now I have a date to focus on. I still don't know the full extent of the procedure as so many things have been thrown up and the surgeons won't know themselves until they start to investigate. I feel ok, not stressed, however when i actually think about it all I feel a little nervous!

[stonecutter]

April 9. I'll be thinking about ya. It's nerve wracking, yes... and of course as you know completely natural to feel that way. But you'll be fine! You also know that too... Keep us posted!

Is there another consult meeting before so you can ask any final questions?

[cate6]

Hi Trevor,
No more consultations just straight in at 7am to be admitted on the 9th. Right now I don't have any further questions but I suppose there is still time for some to arise, I think the fact the surgeons don't yet know what they are doing they probably wouldn't have the answers anyway.
At the last consultation the possibilities were: straightening my leg/stump, removing the knee cap (my knee cap it at thigh level) reconnecting the bones with a plate, removal of neuroma, investigation of other masses and lesions on bone, further amputation and possible re position hip to make it more stable (it's rotating outwards)...so quite a lot for one procedure and they are talking about splitting it into two operations with months in between, I tried to persuade them to get it all over and done with but they basically said 'lets wait and see'. So I'm a bit nervous in the fact that I don't know what will be done, however, I know I'm in good hands and I have faith in the surgeons.
I'll keep you posted

[allenuk]

Wishing you well, Cate. When I read a list of troubles like yours, it does bring me up short about complaining (for example) how my simple bka is just a bit uncomfortable today.

I look forward to hearing how well you're doing post-op!

A.

[cate6]

Thanks Allen. I believe we are all in the position to complain once in a while when things begin to hurt or become uncomfortable for us, I think we have earned that right. What gets me is people complaining (for example by way of a status on Facebook or a Tweet)that they are 'dying' because they have a cold or a hangover, I am so tempted to comment 'I'll see your cold and raise you an amputation'...if only I had the guts!

[ann-]

thinking about you too Cate, hope the op goes as easily as possible for you and that you don't have to go back for more a bit later.

Must admit I have been known to moan a bit myself not only when the legs are not fitting right but sometimes when I have a cold or something, though I must admit i sometimes too have to chuckle about what I read on facebook.

Anyway wishing you all the best, am sure you are in good hands and it will all go well.

[cate6]

Thanks Ann

[greyhnd]

Hope this all works out well for you cate. Hang tough.

[ann58]

Mar 21, 2013 6:31:26 GMT -7 cate6 said:

Thanks Ann

Will be keeping U in prayer and am sure U will handle it well...U sound as if U R a special lady, although I will be glad when U get it over with.

[cate6]

Thanks greyhnd and Ann,I am calmly anxious! The anxiety is creeping in by the day but I do feel calm. I have had a tough few years with bereavements and my health but I have been having Reiki sessions and bereavement counselling, my work changed to part time and I think all of this has resulted in my new found calmness, also I was diagnosed with miagraines in 2011 and today I can't remember the last headache I had. I feel like a new person and although I face surgery I am so chilled it's unbelievable!

I will let you all know once surgery is over and what I have had done

[cate6]

Hi all,
A little update. I got a call on Wednesday to say the consultant wanted to see me today. He's come up with a definite plan for surgery. He's no longer straightening my leg and putting a plate in as he said he feels there is too much risk for very little gain and it would add a month onto recovery, so this is the plan, he is amputating a further 2", removing the neuroma and investigating other masses, he's shaving the upper bone and trimming the lower bone. He's leaving my hip for now. So, I feel reassured that there is a definite plan for Tuesdays surgery. It looks like I'm on the afternoon list for theatre so a long wait on the day.

Hope you are all well x

[ann-]

Will be thinking of you Tuesday Cate, am sure all will go well.