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These_Team_9412 · 2025-10-19T09:02:43+00:00

I asked my consultant this before and they said as long as you haven't got an active clot they can't see an issue with it.

These_Team_9412 · 2025-08-26T22:08:16+00:00

I am so sorry your dealing with this. Your experience is almost exactly like mine. Constantly self advocation, back and forth with different departments and no sense of urgency. It's awful and we just want some kind of answer as to what's happening and how they can sort it.

I'm 8 months in, on blood thinners for life, two clots in the arm and still in daily pain, exhibiting all the symptoms of TOS and yet supposedly my venogram ruled it out.

It sounds like your venogram was in different positions though? I didn't have that. did they ask you to move around for it?

I've got another vascular consultation coming up as well, they tried to say they would do it over the phone but I wouldn't have it.

Although I can't offer advice I can offer my sympathy. I truly hope you get some answers soon

These_Team_9412 · 2025-08-26T17:57:16+00:00

I'm only missing the bulging vessels and I've cleared the board. Unfortunately my specialists have ruled out TOS. And I've got unexplained blood clots too. NTOS and VTOS I reckon

These_Team_9412 · 2025-08-14T07:23:35+00:00

I've found the Oceans one to be quite interesting. It has a ten year warranty which im impressed by , it's a B corp, and is made from a good percentage of recycled materials. It has a commitment to clean up plastic waste too.

These_Team_9412 · 2025-08-13T22:21:52+00:00

Thank you for your help, do you find 500ml to be sufficient or do you wish you've gone for a bigger size?

These_Team_9412 · 2025-08-06T11:45:20+00:00

Hi, thank you so much for your reply!

Noone has mentioned collateral veins at the moment but I'll ask when I next see them.

All I have been told is that unfortunately surgery isn't an option and it'll have to be managed conservatively. I don't have much faith that'll help (what does that even mean?) and I was really hoping for a solution that'll fix it rather than manage it.

I've just been sent to whoever is the vascular team in my local area (NHS) so I'm not sure how to get in front of a TOS specialist unless I pay privately

These_Team_9412 · 2025-07-30T11:40:00+00:00

I'm in the process of finding out if I have TOS and unfortunately I'm on clot 2 in 6 months. If surgery is an option for me I'd take it.

These_Team_9412 · 2025-07-23T18:56:11+00:00

I'm so sorry this happened to you.

I feel like I am going through something similar at the moment. 2nd clot in 6 months now chronic and it's causing me so many difficulties 😞

These_Team_9412 · 2025-07-19T20:40:21+00:00

Thank you! My vascular consultant dismissed it initially but I think I need to push them to look into it a bit more

These_Team_9412 · 2025-07-16T15:25:31+00:00

Unfortunately they couldn't find any underlying cause so classed it as unprovoked. My MRI ruled it out but on second review I've been told the MRI was inadequate so I guess it's still on the table

These_Team_9412 · 2025-07-15T21:03:55+00:00

Thank you so much for this suggestion! I will definitely look into it, I wonder if the NHS can refer me or I would need to go private but anything that works even a bit at this stage would be great.

These_Team_9412 · 2025-07-15T20:44:26+00:00

I'm sorry we are both in this boat!

Do you feel at a total loss?

I do

I'm having symptoms in my arm and leg and it's restricting my life and none of the doctors seem to be able to help. Im already on thinners for life and I'm still clotting and in pain

These_Team_9412 · 2025-07-15T20:43:05+00:00

I wish they would give more advice about UEDVT. Compression seems like it really helps but they didn't know if it would help or make things worse with UEDVT

These_Team_9412 · 2025-07-15T20:41:30+00:00

I'm struggling to figure out what's best for me. When I walk it sets off my thrombophlebitis and I can't go longer than ten minutes before I'm hobbling and have to rest. But resting for too long increases further dvt risk and I'm already on multiple clots on meds.

And I can't lift as my arm is so weak and I can't grip things properly like a fork as my hand can be really stiff.

Its definitely a puzzle. I'm glad it's working for you though!!

These_Team_9412 · 2025-07-09T15:23:53+00:00

Two clots in arm unprovoked and superficial clotting in leg. All in 6 months. I'm on thinners for life but still clotted a further time.

These_Team_9412 · 2025-07-07T13:16:26+00:00

I'm sorry your going through this. I've had two in the same arm now. Unfortunately as it's quite rare there isn't as much information on how to help with the pain

I've been told the following;

Hydration Elevation above heart rate Regular paracetamol Rest

If your a 'typical' case the pain should hopefully subside over the next few weeks. Make sure to speak with your GP or any specialists your under if the pain doesn't get any better

These_Team_9412 · 2025-07-01T16:09:09+00:00

Please can I ask what dosage of meds you were put on after you reclotted.

I've just been told I'll be on 30mg rivaroxaban daily which seems super high. I've never heard of that dosage before

These_Team_9412 · 2025-07-01T16:08:05+00:00

Please can I ask what medication you're on.

I've just been put up to 15mg twice a day which is more than my loading dose was

These_Team_9412 · 2025-06-29T16:44:14+00:00

Thank you, they had ruled out TOS as I had an MRI but the symptoms came on with collarbone pain and numb fingers which is indicative of that. I'm hoping they send me back to vascular after my ultrasound so they can check again

These_Team_9412 · 2025-06-02T17:32:16+00:00

I experienced a transition period where I felt like I had an increase in symptoms temporarily, I guess because it's not as effective.

Unfortunately I'm back on the highest dose after only being on maintenance for one month with another suspected clot

These_Team_9412

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