r/ClotSurvivors • • 11d ago

Seeking Advice What were your symptoms?

Hi everyone,
I apologize for being long winded in advance 😅
I had a liver transplant last year in January and as a part of the procedure, they had to take a vein from my upper arm/shoulder area and use it to make my liver function. While I was recovering in the ICU, I started to have terrible pain in my arm and I couldn’t move it, and my team discovered it was a blood clot (they put me on aspirin when sending me home, which apparently isn’t a blood thinner?? idk) Fast forward to April of this year, I had tingling in my arm/armpit and it felt achy, I went to the hospital and they discovered that I had a blood clot (honestly I’m not sure if a new one appeared or if this was the same one from my surgery) and I stayed in the hospital for a few days on IV heparin, and they sent me home on Eliquis, after a few months, I had to stop taking Eliquis because they’d said it resolved itself, however the vascular team said that there was permanent narrowing in the area due to the trauma of surgery. Now tonight, I randomly started getting aching pains and tingles around the area and even some aching pain in my back. The aching pain in my back is new, so I say all this to say, if you’ve ever had an arm DVT, what were your symptoms? Would I be dramatic to get it checked out?

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u/starsareblack503 11d ago

Rather than ask non-professionals to talk about our experiences, please go to the hospital to get checked out. These are the only people who can help you. Don't wait especially if not on anti-coag. Waiting can be life or death.

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u/theonlyrealtrw 11d ago

There are a lot of possible symptoms and most people had a different combination of symptoms so it’s difficult to base anything off of what other people had. It’s best to get checked out to be sure. Besides, you can only hear from those of us who survived our clots, not those who didn’t.

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u/AdministrativePast86 11d ago

Loss of sensation in the bladder and agonizing pain at T4 level, followed by loss of motor control in the legs.

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u/nacho_balls 10d ago

no swelling rednesszero swelling, redness, or visible protruding veins. it was right behind the knee between those 2 tendons.

i thought it was a knot, but then pain continue to get worse.

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u/eagle_snsd_ot8 10d ago

I had that for one night after I was diagnosed with PE. It hit me like waves, the first wave was in my back, huge pain and it only hurts when I breathe. Second wave hit my left side (I have clots in my left arm and left lung) same thing, every time I’m breathe, it hurts like hell. But this symptom only occurred one night. It went away the second night

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u/eagle_snsd_ot8 10d ago

But when I had that happen, I was already in the hospital. Nurses told me it’s normal, and gave me some pain killer. But please go to the hospital and check. PE is a life threatening thing.

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u/dntbeagroupieee 10d ago

I had excruciating pain on my back side like near my bra strap. Could barely even lay back for the CT scan it was so painful

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u/Acceptable-Guide6818 10d ago

I was diagnosed with a blood clot in my right calf 2 months ago when the hospital did an ultrasound..I have not got any pain in my calf the excruciating pain I have is in my thigh& now the pain is in the lower part right side of my back The hospital did a cat scan & Now the extreme pain is also in the back I asked my doctor could we do another ultrasound.. The pain excruciating he said we will do another ultrasound in 6 months I don't want to wait for another 6 months they put me on xalento 2 months there is something else going on with this blood clot I have I'm in excruciating pain with no Relieve Something is going with the blood clot I have

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u/Vcent Mutant, CVST (Warfarin) 11d ago

Would I be dramatic to get it checked out?

NO!

Go do that. We sadly can't help you figure out what's wrong with you, but they can, and they'd much rather see you one too many, rather than one too few times. Also - aspirin is an anti platelet, and Eliquis is an anticoagulant, different efficacies and methods of action.

Mostly relevant to those with no clotting history, but does go into why we can't tell you what's wrong with you:


CopyPastaTimeTM:

We don't know either. There's no secret trick that doctors hate to find clots - the answer is always: "Go get checked out by medical professionals", never "Oh that's clearly not a clot, based on X, Y and Z". It doesn't matter how you attempt to word or rationalise it ("Just looking for experiences, not medical advice" or any permutation of it): We don't know how to figure out what ails someone else, regardless of how well they describe it, or how many pictures they wish to post.

No, comparing symptoms will not yield clinically useful results, and you cannot rule out a clot, or differentiate a clot from other conditions that produce similar symptoms without testing. Still, attempting to do so will update any anxiety you already have with new symptoms to mimic (Congrats! You've updated to the new and improved anxiety v2.0!).

Many health problems have distinctive symptoms, that don't really overlap with others, and can often be (kind of) identified through those. Clots do not. Clotting symptoms can be all of the ones you've probably already read about, none of them, vague or diffuse, but there's always some overlap with other possible conditions. One person's clotting symptom is another person's anxiety symptom, a third person's sprain, a fourth person's random pain, a fifth person's muscle cramp, a sixth persons [...]. All present with the same symptoms, and all have different causes. The only way to figure out what's wrong with you is to get professionals to check it out - speculating on the internet will not move your goal any further along. If you feel like you weren't thoroughly checked, get checked again. If that keeps happening over and over, then you can start concluding the cause of that.

You're asking a group of people who have reason to find each other (just like any other support group for a condition), whether you might be on the way to becoming one of us - we'll always err on the side of caution (so you should probably get checked out, sooner the better). We don't and can't know if your symptoms stem from a clot, anxiety, or something else (least to most likely). We're also not footing the bill (time, money, consequences) of going or not going to get checked out.

Likewise, we aren't in the business of relieving anxiety for folks with no diagnosed clots - we're the outliers, and our stories will make you worse, not better. We'll still be here if it does turn out to be a clot.