Heamatoma

[GillyA]

In early December I had a very bad epileptic seizure and fell forwards onto concrete steps (not fun). I spent time in hospital with concussion and severe bruising, especially on my face (I looked something like ‘The Scream’). This mostly resolved by Christmas, but I was left with a hard lump almost 2cm across on my lip, which started bleeding in early January. In the end I had to have plastic surgery to evacuate the bleed and heamatoma as well as rebuild my lip.

in mid February my knees suddenly started swelling after an INR peak. The current diagnosis is that I probably had bleeds on both knees, one of which appears to be resolving, the second, however, has left an unresolved heamatoma under the patella. This is being associated with damage done during the fall in December. There is a debate going on about whether to evacuate or not.

I’ve so far managed 3 stays in hospital, 4 MRIs, 2 Ultrasound, surgery and around 10-12 outpatient visits as a result of one seizure.

I’ve never had anything like this happen before, although I can’t remember a really bad fall since childhood. My basic question is if the formation of unresolving heamatoma might be associated with APS, I would have expected warfarin to prevent this sort of situation (not the bleed, but the fact it’s clotting and not resolving). Does anyone have any ideas?

[Star13]

What does your Heamatologist say about that?

[GillyA in reply to Star13]

it’s been a bit chaotic, I was out of the country when the swelling happened, got back on Tuesday and spent most of Thursday and Friday doing outpatients and waiting for scans. Then decision that one knee was resolving and the other had a hematoma came about 1830 Friday. At that point everyone decided it could wait until next week and there was no time for questions. I’ll follow up with the heme, but would like to know if anyone else has had issues with non resolving hematoma, it feels very odd to have had two.

[Star13 in reply to GillyA]

I had a large one after spinal surgery that took ages to resolve despite Heparin.

[GillyA in reply to Star13]

Thank you, yes I’m on heparin at the moment. They are trying to decide whether to aspirate or not. Hopefully things will sort themselves out soon. Really sorry to read your story, I hope everything got back to normal.

[GinaD]

Sorry. I have no relevant experience. But I will, as the Quakers say, " Hold you in the Light." Please let us know how things are for you going forward.

[MaryF Administrator]

I think they as in your medical professionals will probably watch and wait for a bit, these things can take a while to settle down after you 'have been in the wars. I hope you get better soon. MaryF

[nyctapdancer]

Sorry you had to go through all that! Sounds dreadful. Unfortunately, I can't answer your question. I had an egg-sized hematoma BEFORE I was on Warfarin - as the result of a fall. My body basically re-absorbed it, but it took about a year for it to go away.

[KellyInTexas Administrator]

I recently went thorough compartment syndrome due to a bleed in my muscle. ( hematomas in multiple sites in one muscle anterior of lower right leg. My enoxaparin level was too high. ( doc was not testing it correctly.)

Also my veins are experiencing a lot of fragility currently.

Make sure it’s not currently or is not at risk of becoming “compartment” syndrome.

Ask how often you need to check the anti factor x a level. Check at peak and trough. Make sure three doses have been given before you check it. ( you are dosed 1 mg / kg every 12 hours if on enoxaparin- usually what’s needed for APS patients.)

[Bloodredroses]

sorry you have had such bad luck with so many consequences . Find and get referred to an excellent APS Specialist and Epilepsy Speciakist . . It is too complicated to get non specialist advice on here . APS and epilepsy two different specialities .

[GillyA]

I’m incredibly fortunate to have top class specialists at UCLH in both Epilepsy and Haematology and have had great care from both. Appointment time can be limited though and I try to understand what’s happening by doing a lot of research. One of the great advantages of this forum is that we are able to reach out to each other for shared experiences. This last few months have been really difficult to manage. Taking warfarin when you have epilepsy increases risk and this time the risk was realised.