Hi was diagnosed with aps 3 years ago and put on 75mgs aspirin precautionary as never had dvt or any thing....do have livedo! also have sjogren's. I am facing knee replacement surgery on the 28th of Nov. and have been told to stop aspirin 7 days before??? Just a little worried....any one with any opinions please??????
Hi new here! but opinion advice neede... - Hughes Syndrome A...
Hi new here! but opinion advice needed on forthcoming knee replacement surgery
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Hello and welcome. I suggest that you perhaps get in touch with the secretary of the medical person/person who gave you the diagnosis..send an email to the secretary marked for the specialist's attention; Explaining your worries about management of this before, during and after the operation, this is really important. Put your GP's name and address on it... and ALSO the name and location of specialist due to to your knee, if possible copy email to secretary of knee specialist as well. Most medical secretaries will let you do this, and pass the info on... At least they have in my case! I would also visit your GP with a copy of the letter you have written, this will make the relevant parties talk we hope. Are you under any particular consultant/team etc etc. Hope this helps. I would start on this sooner rather than later, in case somebody is on leave, also secretariat in hospitals is so stretched these days on the NHS. Mary F
Hi Mary and Thank you,
Sorry I am english but in France and every one concerned is very very aware of what I have....I spoke to my GP yesterday and he said as I had not had a dvt he did not feel the need to give me anything else for the 7 days I am not on aspirin!!!!!
I also spoke to the surgeon and he said he is just the surgeon and I needed to talk to the anethetist....which I got my doctor to do!! and this was the outcome of their conversation.......but I am really worried....I think I may go and visit my doctor on Saturday morning........He does know I am worried to the extent that I will cancel this op if I have to as my problems all stem from cervical neck surgery....ie trauma!!!!
Sorry it is so difficult for you... I would still phone/email urgently the hospital/practice where you first had your diagnosis... and speak to the very secretary of that person... and write that email marked urgent. You could put the names of the people involved - currently - on that.. I think that is first port of call. One medic will take notice of another, usually if the have the knowledge. A GP who has no knowledge beyond you not having had a dvt is not good enough! You are right to pursue this, keep me posted. Mary F.
Hi Mary,
unfortunately it was my doctor who diagnosed me, he it quite clued up, and he put me in hospital for further tests! It would be him that needed to prescribe a replacement......so I have just phoned him to see him Saturday.....he knows I am not happy!!!
Yes it is difficult..........I have had no further tests since March last year...I read about people testing them selves....whats that about I just take aspirin!!!! oh and plaquenil........so all in all one very worried person!
Thank you for giving me your opinion though.....it means a lot....and confirms my fears!
Pauline
The best of luck... to have a clued up GP is over half the battle, he should be able to reassure, you, fight your corner and generally smooth things over. Take a full list of your queries with you, and what you are taking etc etc. I sometimes forget once I go to an appointment and drone on about the wrong thing!!!!!! I hope he really does put your fears to rest, I think he probably will. That is what they are there for, and you have a good one. Saturday will come around quickly, and he will help you. Mary F
I need shoulder surgery and my hemotologist told me that the standard procedure is to come off your warfarin therapy and to switch over to heparin for the srugery itself. This is so that you won't bleed excessively when they operate. As it was explained to me, heparin is the safe substiture for surgery, as it works via another coagulation pathway that will not result in your bleeding too much.
So you might want to ask if they are planning to give you heparin or not.
I need shoulder surgery and my hemotologist told me that the standard procedure is to come off your warfarin therapy and to switch over to heparin for the srugery itself. This is so that you won't bleed excessively when they operate. As it was explained to me, heparin is the safe substiture for surgery, as it works via another coagulation pathway that will not result in your bleeding too much.
So you might want to ask if they are planning to give you heparin or not.
Hi all,
And thank you for your help!
I saw my GP this morning and I now have Heperin injections as from Tuesday! Took a bit of getting there but managed in the end!
I did know that I could not take aspirin but they were not prepared to give me anything else!!!! but my own GP has! Job done! phewwww!
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Good on you, I am so pleased, it is so refreshing to read about such good communication between a GP and patient in a condition often misunderstood and sidelined - the best of luck with your operation. You will soon be dancing again. Mary F
Thank you Mary F,
I do have a really good relationship my my GP....even in France!!!!He never hurrys or rushes and we talk about all sorts of things!!! not just medical! and he did understand my worry which was the main thing!!! One of the many reasons I came to France was to get a diagnosis, like many I guess when looking for answers, I was actually told to 'Go home and get on with your life' by my surgeons registrar in the UK. When I came to France and found this doctor, after a little while of being here, he actually beleived me and put me in hospital in Limoges in the department for rare diseases and they found aps! So a little bit of my story. One day I shall write it all, it is not as sad or drastic as many peoples and I am very lucky in many ways....although it has changed my life drastically!
Once again thank you for your understanding!and best wishes to you !
Pauline
i had surgery about 5 years ago for an abdominal blockage and the surgeon wanted to take me off heparin 3 days before. thankfully my hematologist kept me on heparin until 20 minutes before surgery and had me back on it 20 minutes after.
if the surgery had been more than 3 hours i would have been on heparin during the surgery.
i have had oral surgery, dermatological surgery on coumadin with no major issues. coumadin just makes me normal. and i alternate 15 and 12.5 mg.
I had surgery 3 weeks ago and was told to stay on my aspirin! No problem with bleeding after wards..... Can you have your specialist (APS Doctor) work in coordination with your Orthopedists to insure the best results? The surgery was Sinus and that usually bleeds a lot but I did great.
Hope all goes well!
LisaWa