Sticky Blood-Hughes Syndrome Support
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Excited/Nervous about Surgery

After fighting with the insurance company since October, I've finally been approved for lumbar fusion surgery (L5S1 PLIF with large laminectomy) which is now scheduled for the end of the month. I'm hopeful this will greatly improve my quality of life but also pretty nervous since:

1. Just started anticoagulation for large DVT caused by lupus anticoagulant December 9th. Received APS diagnosis thereafter.

2. My INR is still not within the 2.5-3.5 therapeutic range set by my doctor. The falsely high INR readings due to the LA combined with the lack of APS specific knowledge of my gp and hemotologist really slowed things down. My highest number was today so we're movig in the right direction but patience isn't a strong point for me.

3. Due to the combination of my back issues and dvt and the amount of time I've been on meds I'm having trouble with tolerance to pain meds. This makes me nervous about how the post surgical pain management will go.

That all said, I am happy to have a date for surgery and hope for improvement. Thankfully someone more powerful than me is in charge- when I find myself stressig/obsessing I try to remind myself of that.

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Hi, you have a lot to go through. I think the positive way in which you are tackling this is fantastic. It will surely aid in a quicker and better recovery for you. Re - the pain management worries....I would think the team in charge of the procedure, and other relevant doctors in aftercare will note how positive you are, and that always scores a few points with them. With this in mind, I would definitely be discussing your pain management concerns post surgery with them now. They will be more inclined to take on board your troubles, being so positive, in my view. I would hope with your information, they can come up with a suitable post-op pain management programme. Communication is key.

All the best with it all, and here's looking at a brighter 2015


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Wishing you the very best of luck with it all for a smooth transition through to the other side. MaryF


Thank you for the support. Had a good pre-op appointment with my gp today and it seems like he's on board to help as needed. Was a little shocked to learn that there was a whole point difference between my last finger poke and veinous INRs from yesterday (finger poke said 2.7 and lab said 1.7). I'm just glad that he's so open to learning and taking suggestions!


Here is a link that talks about how a few patients with Lupus Anticoagulant can have falsely elevated INR's on their PT screening. There is a different test they can do to more accurately assess your true INR level. Maybe you can ask your hematologist about this test. I hope this helps you some. Good luck with your back surgery.

Here is the link


I'm glad you're excited about your surgery. I don't want to damper that but would suggest that you speak with your surgeon about the possibility of a failed fusion. I had the same surgery a year before my APS diagnosis. It is possible I didn't fuse due to lack of blood flow. My neuro said he would've made some changes to the instrumentation of he had thought I might not fuse. You may have already had a similar discussion with your Dr. but it's such a huge surgery I felt compelled to at least mention my personal experience. Praying for a perfect outcome for you!


Thanks for sharing. Sorry to hear your fusion didn't work the way it should have. I'm guessing you weren't on blood thinners yet at that time? I would think not being anticoagulated could definitely cause a blood supply/healing issue for this type of surgery. I will ask about it. Definitely feel like it's yet another reason that good INR management is goung to be really important.

How is your back now? Did you have to do any other surgeries/interventions for it?


I was on shot and compression machines were hooked up to my as standard precaution but I wasn't on thinners until the PEs which came several months later. I just wonder if they would've approached it any differently if we had known I had APS. He said he wished he had put in another spacer and he can still do so with relative ease if my pain becomes worse. Right now it's not bad enough to go through anything else.


Thanks for the information. I will ask my surgeon about this. He is aware of the aps and coordinating with my gp for bridging. Best of luck with your back. Hopefully it will get better without further surgery!


Being Lupus Anticoagulant my understanding is that the gold standard is to have venus tests for INR not finger pricks. This is because the finger prick test machines can sometimes not be 100% accurate and if you know what the calibration of your machine is and allow for this that is ok but if you are not self testing and are using a hospital machine then venus tests are better.

Secondly, I believe I mentioned the is before, now that you are on warfarin, its imperative that you are bridged. We have had people on here before who were not and had surgery and who had bad outcomes.

This is a british paper but you will note they will not do surgery until after 3 months post VTE:

You also might like to point your Doctor in the direction of this very new paper just released this month of which I can only get the extract for you and so Im copying it here incase you cant even read the link.

Bridging therapy in antiphospholipid syndrome and antiphospholipid antibodies carriers: Case series and review of the literature.

Raso S(1), Sciascia S(2), Kuzenko A(1), Castagno I(1), Marozio L(3), Bertero MT(1).

Author information

1. Clinical Immunology, AO Ordine Mauriziano, Torino, Italy.

2. Centro di Ricerche di Immunopatologia e Documentazione su Malattie Rare and Università di Torino, Torino, Italy; Graham Hughes Lupus Research Laboratory, King's College London, London, UK. Electronic address:

3. Department of Obstetrics and Gynaecology, Università di Torino, Torino, Italy.


Peri-operative management of patients on warfarin involves assessing and balancing individual risks for thromboembolism and bleeding. The timing of warfarin withdrawal and a tailored pre/postoperative management (including the substitution of heparin in place of warfarin, the so-called bridging therapy) is critical in patients with prothrombotic conditions. The antiphospholipid syndrome (APS) is the most common cause of acquired thrombophilia. In this particular subset of patients, as the risk of thrombosis is higher than in general population, bridging therapy can represent a real challenge for treating physicians. Only few studies have been designed to address this topic. We aim to report our experience and to review the available literature in the peri-procedural management of APS and antiphospholipid antibody-positive patients, reporting adverse events and attempting to identify potential risk factor associated with thrombosis or bleeding complications.

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Wow! Thanks for all the info! Here in the states they'll operate 6-8 weeks aftervs dvt when you have none reversible risk factors such as APS. My surgeon id also eager to get it done so I can be more active again which will reduce my clotting risk a little. The surgeon and my gp are working closely to bridge me. I'll let you know how it goes.


I think they are working on normal DVT protocols and not on the increased clotting risks of someone who has APS. Forgive me if Im wrong but Im under the impression that your DVT is not fully resolved and if that is the case I caution you to consider any surgery until it is.

I accept that they want to get you more mobile but not at any further risk. It is imperative and I cannot state this loud enough that you seek the advice of an APS specialist and do not just go ahead with this on the advice of a back surgeon and a GP who will not have APS knowledge. You have the most positive kind of APS with positive Lupus Anticoagulant antibodies so you need to take this seriously and learn all you can before making this decision. I have to say I would not be doing what you are without seeking the advice of an APS specialist first and making sure that he or she consulted with the surgeon.

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