dvt question

[Chislenko]

Sounds like it as he's hoping "it'll go away with pills"?

The reason I ask Vic, as a seasoned DVT / PE sufferer according to my GP if you stay on blood thinners the likelihood of getting another DVT are very unlikely.

However I too suffer from very bad leg pain post DVT and my suggestion to the OP would be to have an arterial brachial index test to see if they have low blood circulation in the legs.

My right leg pressure is very low (a result of blocked arteries / veins) The GP has now put me on statins as well to stop this getting any worse.

The consultant I saw on the NHS reckons mine isn't bad enough yet (he doesn't have to live with it) but the last resort is a by pass operation in the leg. I do feel he just wanted me off the waiting list to bring the numbers down!!

 

[berty bassett]

Question to the OP

Are you on blood thinners at the moment?

yep

 

[berty bassett]

The reason I ask Vic, as a seasoned DVT / PE sufferer according to my GP if you stay on blood thinners the likelihood of getting another DVT are very unlikely.

However I too suffer from very bad leg pain post DVT and my suggestion to the OP would be to have an arterial brachial index test to see if they have low blood circulation in the legs.

My right leg pressure is very low (a result of blocked arteries / veins) The GP has now put me on statins as well to stop this getting any worse.

The consultant I saw on the NHS reckons mine isn't bad enough yet (he doesn't have to live with it) but the last resort is a by pass operation in the leg. I do feel he just wanted me off the waiting list to bring the numbers down!!

this is the reason I posted on here , to see what fellow sufferers have / are experiencing . I was told there could be a certain degree of pain but was nt expecting anything quite like this . I have been checked and checked again by hospital and again by doc so they are aware of situation and I am sure if they were concerned they would act , ive had 2 scans in 8 days and dropped my trousers at many strangers . contrary to popular believe , I am not stupid , ive been given pills and doing exactly what the experts tell me
I am grateful for the responses on here but dont need telling to go hospital , ive done that , I am not hiding head in sand and hoping it will go away - my wife wont let me do that !
I was more hoping that there would be people on here willing to write about there experience as a sufferer and if they had pain , what they did to help relieve it . why a cycling forum ? well I believe that a lot of hard cycling over the years , although is good for you in many ways , it can cause a few issues with veins and what not . I do have bad varicose veins , bradycardia and enlarged heart and although I have worked outside building and on my feet all day that I am sure didnt help , doctors have mentioned cycling hasn't helped either but was a life choice that I am sure helped mentally
I have had a few answers on here that really have helped and I am grateful

 

[berty bassett]

The reason I ask Vic, as a seasoned DVT / PE sufferer according to my GP if you stay on blood thinners the likelihood of getting another DVT are very unlikely.

However I too suffer from very bad leg pain post DVT and my suggestion to the OP would be to have an arterial brachial index test to see if they have low blood circulation in the legs.

My right leg pressure is very low (a result of blocked arteries / veins) The GP has now put me on statins as well to stop this getting any worse.

The consultant I saw on the NHS reckons mine isn't bad enough yet (he doesn't have to live with it) but the last resort is a by pass operation in the leg. I do feel he just wanted me off the waiting list to bring the numbers down!!

thank you for reply

 

[berty bassett]

Yikes - I would go to the hospital ASAP!

I got the leg pain the first time but there wasn't any question of going for a walk because the clot had broken up and spread to my lungs (a pulmonary embolism), which completely disabled me. I was taking 20 minutes to crawl down one flight of stairs to make a cup of tea and when I got there I struggled to open a bottle of milk.

It is alarming that you're suffering from a third lot of clots! They tried taking me off anticoagulants after 8 months but I lasted just a few months before clotting again so now I am on them for life.

Apparently, DVTs often don't completely clear - they leave scar tissue inside the veins. That is rough and disturbs blood flow so the risk of subsequent clots is much higher. I would have a serious conversation about taking the pills for life now!

My veins are still sore 14 years on but not generally painful. The non-return valves in the left leg were damaged though so the leg keeps swelling up. I wear compression sleeves to keep that under control.

A pulmonary embolism can kill as quickly as a heart attack, so take the risks seriously!

I got onto the meds much quicker the second time so I avoided the pain, and my breathing improved enough for me to get back on my bike in a couple of months. I never made a 100% recovery though. I reckon my lung function only got back to about 75% of what it would otherwise have been. My left lung still feels stiff, probably due to scar tissue from the second PE which was mainly on that side.

GWS!!

thank you for reply

 

[AlanW]

As a DVT and PVT sufferer, get to the doctors or hospital asap! I had my first DVT a few years back and like you I assumed that I had pulled a muscle. I rode to work that day and suffered on the way home, once home I added a comment on Strava about what it felt like. A friend of mine suggested that it "might" be a DVT and to get it checked. Being a typical stupid old man, I ignored that advise and carried on riding!
Until it got to the point that I had to go see the GP, they gave me a blood test which showed that yes it was a blood clot the GP wanted to call an ambulance to take me to hospital!

However, not being one for fuss and also not really understanding the urgency of the situation I declined and decided to drive myself. But I called in at work first! At hospital the ultrasound confirmed what the blood test had already indicated.

I was immediately put on anticoagulants, in my case Rivaroxaban, while they carried out more blood tests plus many CT and MRI scans etc

Six months later after so many tests, no conclusion was made as to why I had suffered from this DVT. So the Rivaroxaban was stopped but I was told if I get another DVT, it would mean blood thinners for life

Guess what happened next....yep another DVT in the same leg a few months later, so back on Rivaroxaban. Meanwhile, more tests and then they discovered a PVT (Portal Vein Thrombosis) which has no real systems like a DVT, so it was a sort of blessing really.

So it was now back on Rivaroxaban for life and while on this a small lump appeared in the same place as previous DVT's, but no pain? More ultrasound and blood tests, but it couldn't be decided if it was yet another DVT or the remains of an old DVT that had not cleared?

Which meant I was forced sort of forced into upping my game and going on to Warfarin and consequently regular INR tests, which despite being one of the original and oldest blood thinning medications, it is still considered to be the best.

Plus, unlike the newer blood thinning medications, it can be reversed using specific medical treatments, the same cannot be done for the newer versions.

 

[Chislenko]

As a DVT and PVT sufferer, get to the doctors or hospital asap! I had my first DVT a few years back and like you I assumed that I had pulled a muscle. I rode to work that day and suffered on the way home, once home I added a comment on Strava about what it felt like. A friend of mine suggested that it "might" be a DVT and to get it checked. Being a typical stupid old man, I ignored that advise and carried on riding!
Until it got to the point that I had to go see the GP, they gave me a blood test which showed that yes it was a blood clot the GP wanted to call an ambulance to take me to hospital!

However, not being one for fuss and also not really understanding the urgency of the situation I declined and decided to drive myself. But I called in at work first! At hospital the ultrasound confirmed what the blood test had already indicated.

I was immediately put on anticoagulants, in my case Rivaroxaban, while they carried out more blood tests plus many CT and MRI scans etc

Six months later after so many tests, no conclusion was made as to why I had suffered from this DVT. So the Rivaroxaban was stopped but I was told if I get another DVT, it would mean blood thinners for life

Guess what happened next....yep another DVT in the same leg a few months later, so back on Rivaroxaban. Meanwhile, more tests and then they discovered a PVT (Portal Vein Thrombosis) which has no real systems like a DVT, so it was a sort of blessing really.

So it was now back on Rivaroxaban for life and while on this a small lump appeared in the same place as previous DVT's, but no pain? More ultrasound and blood tests, but it couldn't be decided if it was yet another DVT or the remains of an old DVT that had not cleared?

Which meant I was forced sort of forced into upping my game and going on to Warfarin and consequently regular INR tests, which despite being one of the original and oldest blood thinning medications, it is still considered to be the best.

Plus, unlike the newer blood thinning medications, it can be reversed using specific medical treatments, the same cannot be done for the newer versions.

Alan, your account of events pretty much echoes mine and funnily enough I too am left with a lump, mine is behind my right knee. The consultants advice was "walk it off" So I am just back from an eight mile walk this morning and my leg is killing me!!!

Unfortunately, I haven't cycled for a while now.

 

[berty bassett]

Alan, your account of events pretty much echoes mine and funnily enough I too am left with a lump, mine is behind my right knee. The consultants advice was "walk it off" So I am just back from an eight mile walk this morning and my leg is killing me!!!

Unfortunately, I haven't cycled for a while now.

thats what I am afraid of . I am very active usually ( if I wear watch it will say over 20000 steps most days , but stopped wearing it as it kept sending alerts about low hr) - I have a very physical job and along with normal bike riding I do intense riding on turbo trainer so far hospital say no work for another 2 weeks , took away cycling holiday to Portugal due to flight risk , definitely no cycling of any kind - not even turn legs over . I dont think I will handle this no exercise routine very well at all - just wanted to hear others say there is light at the end of this 'getting longer by the minute 'tunnel

 

[vickster]

The consultant I saw on the NHS reckons mine isn't bad enough yet (he doesn't have to live with it) but the last resort is a by pass operation in the leg. I do feel he just wanted me off the waiting list to bring the numbers down!!

Get a private opinion?

 

[Chislenko]

Get a private opinion?

Was thinking that, just worried if I go to the local Nuffield will it be the same consultant as I feel sure some of them do work for both.

 

[vickster]

Was thinking that, just worried if I go to the local Nuffield will it be the same consultant as I feel sure some of them do work for both.

You can choose who you see. Yes your guy might be there, but he'll have colleagues too. Vascular surgeon presumably?
Nothing to stop you seeing him privately too if you say it's bad and you want to pay for the surgery...if he's the best around

 

[ColinJ]

I dont think I will handle this no exercise routine very well at all - just wanted to hear others say there is light at the end of this 'getting longer by the minute 'tunnel

In the long run you might very well get back to full fitness. As I posted above, I didn't quite manage that - my top end fitness feels slightly limited (I haven't got as much ooomph as I would like to have) - but I have done many 100-200 km rides since my DVT/PEs, often over very hilly terrain.

Hopefully, your recovery will be swift and at least as good as mine.

 

[AlanW]

Alan, your account of events pretty much echoes mine and funnily enough I too am left with a lump, mine is behind my right knee. The consultants advice was "walk it off" So I am just back from an eight mile walk this morning and my leg is killing me!!!

Unfortunately, I haven't cycled for a while now.

The rather bizarre thing is, I've had that lump for twenty plus years, its half way down my right calf muscle. My old GP who just happened to also be a cyclist referred me to hospital as he was concerned that if it ruptured or got severed in the event of a crash then there was a high risk of a catastrophic bleed. But the hospital refused to treat as as they classed it as being cosmetic surgery?

Despite an appeal plus an recommendation from the GP, they stood their ground and refused to do anything about it.

Fast forward to when I had my first DVT and that lump was the epicentre of the clot. It was sooo tender to touch and so blooming painful! Now oddly, but when I started on Rivaroxaban it greatly reduced in size, in fact it shrunk down to virtually nothing.

Fast forward yet again, and I've been on Warfarin for over two years now and its back to the size it was before??

I am certainly not overweight, I cycle 300 plus miles per week and pretty much every week and I have no family history of DVTs, so how come?

 

[AlanW]

Alan, your account of events pretty much echoes mine and funnily enough I too am left with a lump, mine is behind my right knee. The consultants advice was "walk it off" So I am just back from an eight mile walk this morning and my leg is killing me!!!

Unfortunately, I haven't cycled for a while now.

Not quite to sure how you walk of a DVT, but hey, what do I know!

 

[Pat "5mph"]

well I believe that a lot of hard cycling over the years , although is good for you in many ways , it can cause a few issues with veins and what not . I do have bad varicose veins , bradycardia and enlarged heart and although I have worked outside building and on my feet all day that I am sure didnt help , doctors have mentioned cycling hasn't helped either but was a life choice that I am sure helped mentally

My best friend, who is actually only alive because of @ColinJ's DVT mentions on CC (I recognized the symptoms, told her to go immediately to hospital) is the most inactive (not unhealthy though) person you could ever meet, always has been.
And yet she's on blood thinners for life after 2 instances of DVT.

took away cycling holiday to Portugal due to flight risk

Here (NHS Scotland) they do not tell you not to fly.
My friend asked the consultant - because I told her to - the consultant answered "we do not tell you not to fly".
In both instances, she got her blood cloths the day after flying.