Knee

[blueboy1]

Hi all just want to ask your opinion. I had a arthroscopy and then had a pulmonary embolism, so very lucky to be here. I was on warfarin for 6 months and the doc took me off it. 5 days off I had another embolism. Ok I now need a knee replacement but I am high risk. I have had my pre op now frightened and don't no what to do. My family don't want me to have the op but I am in so much pain. Many thanks x

[cathie]

What did they say at the preop? What kind of anaesthetic are they planning? I'd be surprised if they went ahead if they thought they couldn't manage the risk but I suppose it depends on whether you have reason to be confident in the medical team. Good luck

[sylvi]

They will know about your blood clots and will take great care of you when they do the op.xxxx

[Peecue]

It ma be an idea to talk with them about giving you heparin to cover the op and to waer the special leg appliances that keep the calf muscles pumping while you are confined to bed. It may be that you need to be tested for antiphospholipid syndrome (APS or Hughes syndrome or sticky blood syndrome), you have to have 2 positive tests within 14 or more weeks. I had one positive test after my pulmonary embolism but then kept getting negatives after that. It took an appointment at St Thomas' Hospital in 2011, 11 years later although locally they had already put me on warfarin for life, and having One negative and 2 positives at St Thomas' that I finally got the diagnosis and I'm on warfarin for life as I have cerebral APS. I also have seronegative arthropathy and finally got an appointment in Leeds in a couple of weeks. Both of these are not in my Home town and sometimes you need to ask for the big cities to get to where they are doing the research. Good luck but do ask for referrals

[blueboy1 in reply to Peecue]

I am now on Warfarin for life, and had the blood test for Hughes. My consultant has told me that i will be looked after well but now i feel very scared that something might go wrong. I will come off my Warfarin before Op then back on day after. Thanks will let you know what happens xx

[Peecue in reply to blueboy1]

As you have to come off it it should be 5 nights before with drag in cover until you get back to your regular INR, please check that the anaesthetist or haematologist who is looking after you put iit in writing. They can put you on a heparin drip to ensure no more clots, but please check with the people who prescribe your warfarin. Ps I have been on warfarin since 2000 and very experienced with self checking with my own machine. Please make sure that you ar properly covered

[Barrister]

I was going to say similar to Peecue - ask to be tested for Antiphospholipid Syndrome. My mum suffered from multiple PE's for more than 20 years before I came across Hughes Syndrome and asked her GP to get her tested. Once she was on warfarin she never had another PE, thankfully. Clemmie

[Crusee]

I had pretty much the same problem as you.I had an arthroscopy in Nov 2013 -10 days later I had a clot in my leg.Thankfully, the physio picked up on it as I thought it was just bad post op pain,but if she hadn't I would have left it longer and who knows what the consequences would have been.

I was then treated again with heparin and put on warfarin for six months.As soon as I came if I had another clot but in my other leg - not the one I had the arthroscopy done on.I knew straight away that this was a clot.I recognised the pain and it was certainly different from any other type of pain that you get.I was treated again with heparin and now on warfarin for life.Fortuately mine were picked up at the leg stage but yours got to be far more serious.

I have discussed a knee replacement with the surgeon but for various reasons he doesn't think a replacement will benefit me in any way and could actually leave me worse off than I am now - which I don't want.I was actually quite grateful that there were other reasons I couldn't have this op but they assured me that extra care would be given as they were now aware of the recurrent DVT's and these would be taken into consideration during the op and during post operative care.

I can understand you feeling the way you do about this,but as they are aware if the situation it will be monitored closely.I suppose ultimately you have to consider if you can manage the pain any other way.They may also need to adjust your warfarin dose prior to the op but your medics will also advise you on that.

It's a decision only you can make but make sure you are given all the facts before you do so and get the reassurances that you need.

It's stressful enough having an op in the first place without adding extra worry into the pot.

Take care and hope all goes well whatever decision you make.

Crusee

XX

[blueboy1 in reply to Crusee]

Thank you so much nice to talk to someone that understands. I have had one knee replacement now need the one i had the arthroscopy on. I am getting myself worried thinking what if i don't get the care i need as nursing staff worked to the limit. My pain is quite bad and the more i do the worse it gets. When i had my first embolism i was told how lucky i was to be here, the clots went to my lungs. But this leg is bad swelling at my ankle and very painful. I have had my pre op just waiting for date. I am thinking of asking if i can have a year open appointment see how i get on. Thanks again. x

[Crusee in reply to blueboy1]

If they will allow you to keep an open appt for a year that would be excellent.It would give you ptime to work out the pros and cons of the op and give you more time to be better prepared.It also gives you more time for your imagination to run away with you- which is what mine would do I know.But having said that you will be able to better assess if you can manage he pain long term or opt for surgery.

Difficult decision,but only you can make it.

I must admit I know the pain of a clot straight away now - it is definitely a different sensation to an ordinary pain which was why I could recognise my second clot immediately.I am sure you would be the same after the experiences you have had.

Good luck.keep well.

Let me know what you decide to do.

Crusee

XX

[Peecue in reply to blueboy1]

Please see GP urgently and ask them to scan you leg, as if there is a clot it needs treating before it travels any further. If necessary take yourself to A&E if GP isn't listening. Clots can do really nasty thing and treatment is urgent

[Peecue]

Have a look for Hughes syndrome and talk to people on there as they have been through many things. And have given me lots of support through the forum x

[Someonesmother]

I had major shoulder surgery earlier this year and I am on anti coagulants permanently as I have blood clots in my heart due to Afib and Wolf Parkinson White Syndrome. Talk to the surgeon about it and tell him/her your concerns. I am not sure why you aren't on them permanently. I took them right up to three days before op then they put me back on them as soon as the bleeding subsided, I think 24 hours after op. There are things they can do.