What did you, who have had to have surgery do??

[grammy4him]

My husband has been diagnosed with APS since 2003 when he had his first stroke. His last stroke was in March with an INR of 2.5. He has since seen an ortho for a torn rotator cuff and thinning of the tendon. The ortho would recommend surgery but in his case, is reluctant because of his stroke history and if hubby chooses to move forward would want to work with a hematologist on properly bridging the warfarin to have successful surgery without bleeding complications or clotting/ stroke. Would love to know how others came through successful surgeries. At this point, I hate that he has this pain, but am more afraid of another stroke. He is finally recovering from the double vision the last stroke left him with. We are grateful the strokes have not caused major damage. He also has stage 3b chronic kidney disease. The APS is primary and also has sjogrens syndrome.

[HollyHeski Administrator]

Hi, I've had many surgeries, before and since my diagnoses of primary APS and sjogrens.

Shear luck on the operations before treatment and no bridging, when looking back, luck must have been on my side.

Since diagnoses, surgeries have been well planned, with clexane before and after. Some of the operations, the doctors have been very or over cautious and I've had to push for them. I lived about 100 miles from the hospital where my APS specialist is, now I live over 200 miles away, but she prefers me to have any procedures there so she can monitor me.

Look into the bridging plan, understand it and get your APS specialist on board, even get them talking to your surgeon?

You have to weigh up everything and it's hard, but quality of life with no pain is important too.

It's good he has you by his side.

[Peecue]

I have had many surgeries too. But I didn’t have a stroke I have had a pulmonary embolism. In preparation for my surgery I have worked with the consultant and warfarin clinic they have advised me to stop the warfarin and bridge it with Dalteparin otherwise known as Fragmin at a dose worked out with my weight. After the surgery I continued with the fragmin and started the warfarin. And wverually as my INR was low but I was having a high dose of warfarin they put me on a Therapeutic dose of fragmin alongside the warfarin. Hope this helps

[Lure2 in reply to Peecue]

Hope you now have a Specialist to talk to about APS who also knows this illness and that you can have your INR steady and high enough to fight your clots and emboli.

[Lure2]

Hope he is well anticoagulated after ev operations and has got a Specialist to talk to about his APS.

[loretta1106]

I had knee surgery in November. Surgeon referred me to a hematologist who took me off warfarin several days before the surgery and I then had to inject myself with Lovenox. Surgery went well. Inr returned to normal. A nurse came to check in at home. I went back on Warfarin

I have a torn rotator cuff also and do exercise to avoid surgery. I have APS and MCTD. I had a stroke 5 years ago snd am thankful some speech issues are a result of the stroke and not much more. I was dc with aps after stroke and mctd before.

[thesla1948]

Hi. I really feel for you. Many people consider how a patient is feeling/coping but generally the loved ones don't get consideration. I was on warfarin for 45 years after several pulmonary embolisms. Dr's have always been very reluctant to do surgery due to the fears you have mentioned. But I have had successful surgeries. The Dr's took me off warfarin for 1 month and put me onto heparin injections. I did them twice a day both before and after surgery for 6 weeks. Warfarin stopped working correctly for me so I was changed to Dabigataran capsules instead. I have been on them for 5 years now and touch wood have coped much better. I also have Sjorgen syndrome. Perhaps your partner could ask about possibly changing. Hope that helps

[tim47]

Like many others here I have had surgery and bridging using the old plan from St Thomas. The minor stuff they often leave to me to work out now as they are still learning, the more major usually a discussion between my Haemo and the other party and I.

But I had a similar problem with my shoulder and a torn rotator cuff, the tear about 4cm, and we decided to give physio a go first and to my surprise and delight it worked.

Decades ago, before anyone called what we have even Hughes Syndrome let alone anything else, I was under a very competent and highly respected consultant in Oxford; he had looked after me for around 25 years before he retired with me being one of his last patients. We had become very good friends over the years, he saving my life many times in those days when it was all inspired guesswork it seemed. We had a chat and he advised me to do my utmost to stay out of hospitals and away from anyone who wanted to stick things in me. Everyone since has said that was sound advice - even surgeons say it - and I really think long and hard about all surgical interventions- there are alternatives and they are always worth exploring especially for those of us with APS. My history includes a stroke, PEs, multiple TIAs once with an INR of 3.3., hole in the heart etc etc.

A Hi to all my old friends here whom I don't see much of these days as I am either too busy or too knackered to visit the site - feeling my age, or something, most of the time these days. Best wishes to all.

[Holley]

I've had many surgeries since my APS diagnosis. As others mentioned, I bridged with Lovenox. Went off of my coumadin about 5 days prior to procedure. Injected Lovenox every 12 hours. Held the dose the night before surgery. Then restarted Coumadin while bridging with Lovenox until therapeutic.