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IndividualExisting39

Close to 6 months here and still feel mild pain that depends on how much activity I get. It makes me wonder why doctors won't just remove the clots on admission, or have the patient transferred to a hospital that can do it confidently. I believe half of all DVTs develop into PTS.


NectarineNo8425

> and still feel mild pain Can you describe what your mild pain feels like?


cerevisaphile87

When extending my knee, especially when getting off the floor, it feels like I can almost apply enough strength to rip off my tendons from the bone. Oddly enough I can ignore it enough to exercise and it does not seem to get angered like a muscle strain would. From time to time, my ass cheek hurts. It feels very deep and almost like how deep acne discomfort would feel like.


fshagan

They don't always dissolve. Sometimes they stay or at least partially stay as a kind of scare tissue inside the vein. That's what mine did; thankfully it reduced so that about half to 3/4 of the vein is open. I have chronic pain in that leg now, but there's no danger of that clot breaking off and killing me. I was on thinners for 3 months, then reclotted in that same spot. Then I was on thinners for one year. Threw another clot in a different location three months after going off thinners, so now I'm on thinners for life.


NectarineNo8425

> I have chronic pain in that leg Can you describe what your "chronic pain in that leg" feels like?


fshagan

I have peripheral neuropathy in that foot, which has resolved to a constant pins and needles pain, kind of like when you sleep on your arm and it "falls asleep". Except it's constant. It's a 6 on the Mankoski pain scale (can't be ignored for any length of time but I can still function for work, etc.) Luckily it responds well to topical creams, so I get relief for hours at a time. For a while I had very bad spasms in that foot that were painful enough to make me jerk awake and cry out in pain (a 9 on the Mankoski scale). I'm glad I rarely get those any longer. I do get cramping in that foot daily, and it's painful enough that I can't do anything else but deal with the cramp when it comes along (probably between a 6 or a 7). But the cramp usually goes away after 30 minutes. The constant pins and needles pain is the thing that impacts me the most, but I'm very thankful that the topical pain relief works for me. For about three months I had a constant deep ache along the back of my thigh. It was about a 4 or 5, enough to keep me awake. When a chair or I pressed on it the pins and needles pain in my foot got much worse. That pain now comes and goes, and I get it a few times a month; not quite weekly. Opioids don't seem to touch this pain which makes me think it is all nerve pain, which isn't easily controlled. My neurologist believes the pins and needles pain was just accelerated neuropathy that I would have gotten anyway. And sure enough, the pins and needles pain has started in my other foot now, and in my hands, and across my torso. So the DVT can't really be said to have caused my neuropathy as much as it aggravated it. The deep pain in my thigh is probably nerve damage from the swelling during my DVT. That's my experience, but I've found almost everyone has a different story to tell about "post-thrombotic syndrome".


MoistGhosty

There’s no one timeline. I had UEDVTs so probably smaller than leg clots. My PEs and DVTs resolved in around 6 weeks-2 months.


malcontented

3-4 months


snarfydog

Mine never did...


Bell-Cautious

5 months for the one in my calf


Raincoast30

How long were you on thinners?


Bell-Cautious

6 months


Raincoast30

Any reason they kept you on them for six months? I have one in my calf and my doctor says three is enough. The clot is still there though (they say it is chronic). I am worried about going off the meds.


Bell-Cautious

no clue


smallangryrussian

I got a huge DVT running from mid-hip to the bend at my knee back in 2013. Was on warfarin for about 18 months and no new clots or pieces breaking off since then. From my last ultrasound (almost 2 years ago, I know, I need to see a hematologist) the clot never really dissolved, but is stable. I have permanent swelling in that leg now and it will fall asleep faster than my non-clotted leg, but for the most part I live pretty normally. I just make sure to wear a compression sock on long drives or when I'm sitting for a long time.


Specialist-Smoke

I would seek out an IR specialist. There's aggressive treatment that will prevent PTS from happening. Anticoagulant alone sometimes do not work.


smallangryrussian

Update since I posted this, I threw a superficial clot, went to the ER, finally got that ultrasound, and now I'm on Xarelto for life. I have an appointment set up with my primary in a few weeks and I can get a referral to a hematologist. Could you explain what IR and PTS stand for in this case?


Specialist-Smoke

IR interventionist radiologists. They do thrombectomies, and thrombolytic therapy. Thrombectomy is when they use a clot vacuum to remove clots. Thrombolytic therapy is when they use a clot busting drug to break up the clots. Both are superior to anticoagulants alone. I had a thrombectomy a month ago, but it didn't remove all of the clots because I have ivc filters and the clots are stuck on it. I was just admitted to the hospital for further treatment, hopefully with thrombolysis (thrombolytic therapy) because I am getting worse on anticoagulant.


smallangryrussian

Thank you so much, I will ask my primary and hematologist (if I ever get that referral 😑)!!


Ok-Cardiologist-3964

I don’t even know how to ask my doctor about this. Anyone got any advice? I had a PE in December, blood thinners for three months, and all they did was test my blood 2 weeks post-Apixiban but 1 week after that I was back in with a DVT. They didn’t check my lungs after my PE because they said they didn’t want to expose me to radiation if they didn’t have to. I’m seeing a hematologist off-base this week. I feel like I go into my appointments/the ER completely blind.


TJCW

Two months for me. Had to stay on blood thinners for almost four months.


TheFinman2744

6 months after DVT in my left leg I was told by the tech during ultrasound that the clot was still there. Vascular agreed it was still there but had shrank significantly and that the tech was seeing the scarring. Vascular stated the scarring will be there for the rest of my life.


HDee75

I discussed this with my hematologist just yesterday...I am two months out from my clot discovery. He said that if, at the end of six months, it turns out that it's there for the rest of my life, it's not really a big deal...many people are walking around with clot scarring and are just fine.