Two years on and another DVT !

[AlanW]

Two years ago and after what I assumed was pulled calf muscle, actually turned out to be a DVT in my right leg. After many blood tests, 2 x CT scans and 2 x MRI scans the root cause was never found but I stayed on blood thinners for twelve months. Then the GP said stop taking them but if I ever have a repeat episode then it will probably mean blood thinners for life.

Mindful that seven weeks ago I had spinal surgery on L4, L5, S1 and S2, so the risk of getting another DVT was considered to be quite high. So I was given 30 preloaded syringes to self inject anticoagulant direct into stomach, as well as wearing compression sock 24/7 for the first two weeks. Then walking at least two miles every day plus started cycling again, back to 200 miles per week by week six.

Fast forward to the start of this week, painful right calf again, exact same pain/feeling as last time, but not in a specific area, no redness and no hardness?

Had an emergency appointment with GP, GP not sure as its not overly swollen, its not hard and its not red or tender in a specific area. GP goes and gets senior practice GP for a second opinion. She isn't sure either, so just to be on the safe side, she arranged for an emergency ultrasound scan at the hospital.

That was yesterday afternoon, it was looking so good as the radiographer went up and down my calf, "its all looking clear" she said. Then came the "oh".......as she turned the screen round for me to see, and I quote "That's rather a juicy blood clot the back of your knee".

So bad news despite my best efforts I have another one, but the good news is its been found. Meanwhile its back on blood thinners until the hematologist at the hospital decides if they start all the tests all over again, or I simply remain on blood thinners and just accept it is what it is?

My question which remains unanswered at present, if I was at risk of getting one from the surgery, have I just been unlucky in this instance and there isnt actually a risk going forward of getting another unless I need surgery again in the future?

 

[CXRAndy]

You will have to weigh up the pros n cons of being on blood thinners against risk of clots.

I presume from my limited knowledge these clots can be life threatening if they break free and make their way to heart, lungs or brain?

 

[Kingfisher101]

I'd stay on the thinners if I were you. My friends Aunt, had one in her leg from years of being a taxi driver. She had a pain in her leg one night but refused to go to A and E and went out dancing instead. In the morning, her friend went round and she was dead in bed,mid 50s. They are really serious and just take all the help you can get.
If you have now had 2 DVTs I'd say you were at risk of another wouldnt you?

 

[AlanW]

I presume from my limited knowledge these clots can be life threatening if they break free and make their way to heart, lungs or brain?

Yep, if a bit of the clot breaks free, it could be the end of the road 😢

 

[AlanW]

I'd stay on the thinners if I were you. My friends Aunt, had one in her leg from years of being a taxi driver. She had a pain in her leg one night but refused to go to A and E and went out dancing instead. In the morning, her friend went round and she was dead in bed,mid 50s. They are really serious and just take all the help you can get.
If you have now had 2 DVTs I'd say you were at risk of another wouldnt you?

As the radiography said when I asked her, she said if you need to ask the question you know the answer. Its just the thought of having to take medication every day for the rest of my life I find depressing to be honest.

That said, its better than the other option of death !

 

[Deleted member 1258]

@ColinJ of this parish might be able to tell you more on this.

 

[ianbarton]

Two years ago and after what I assumed was pulled calf muscle, actually turned out to be a DVT in my right leg. After many blood tests, 2 x CT scans and 2 x MRI scans the root cause was never found but I stayed on blood thinners for twelve months. Then the GP said stop taking them but if I ever have a repeat episode then it will probably mean blood thinners for life.

I had a similar experience to you. The first clot in a calf I thought was a sprain. On Warfarin for a year and then taken off that treatment. About a year later I had a clot in my other calf muscle, so warfarin for the rest of my life. About 5 years ago I had open surgery to remove part of my intestine, so I came off Warfarin and had a daily subcutaneous injection of clexane (another anticoagulant). This went on for about a year while I had chemo. Have now been on Warfarin for about the last five years.

I have had no real problems with Warfarin. You have to be a bit careful if you cut yourself and apply pressure to the cut to stop it from bleeding.

Edit: I don't understand how something like clexane can stop blood clots, but not lead you to bleed out if you have surgery. Clexane is no longer manufactured, so you get something else instead.

 

[tinywheels]

I suggest you talk to your GP.
Asking medical advice on a cycling forum is not reccomended.

 

[ColinJ]

I suggest you talk to your GP.

He already HAS!

Had an emergency appointment with GP, GP not sure as its not overly swollen, its not hard and its not red or tender in a specific area. GP goes and gets senior practice GP for a second opinion. She isn't sure either, so just to be on the safe side, she arranged for an emergency ultrasound scan at the hospital.

That was yesterday afternoon, it was looking so good as the radiographer went up and down my calf, "its all looking clear" she said. Then came the "oh".......as she turned the screen round for me to see, and I quote "That's rather a juicy blood clot the back of your knee".

And the original GP advice was...

I stayed on blood thinners for twelve months. Then the GP said stop taking them but if I ever have a repeat episode then it will probably mean blood thinners for life.

When I had my first DVT, it caused a very serious pulmonary embolism which almost finished me off. I was on warfarin for 8 months and then the consultant said that he wanted me to stop taking it because the increased risk of bleeding 'probably' outweighed the risk of another clot.

I was fearful and asked if I would be tested regularly to see if I was starting to clot again? No. How would they know if it happened then? I would get ill again...

4 months after coming off warfarin I had my second pulmonary embolism, so... back on warfarin.

One year later, the consultant called me in again and simply said... Your choice - stick with the increased bleeding risk, or take an increased clotting risk?

Since I had already demonstrated that I was very good at clotting but had never had bleeding problems, I would take the bleeding risk, ta very much. So far, no bleeding problems.

10 years now since my first DVT/PE and I have been on warfarin since the second PE in 2013.

I actually think that I have suffered a third DVT/minor PE over the past few weeks. I got a very sharp cramp-like pain in my left calf (same leg as both times before). It wasn't cramp though because my calf was badly swollen, and a varicose vein was bulging. The leg has been more uncomfortable than usual since then, but the swelling has now reduced so I think the warfarin is helping. I definitely would NOT want to be off anti-coagulation with this going on!!!

At the time, I was given the choice of warfarin or one of the new anticoagulants. I decided to go for the tried-and-tested while doctors got more experience with the new drugs. If I were starting again now, I would probably go for the new drug so I didn't have to have regular blood tests and be quite so careful with my diet.

Ultimately, it is a personal choice what to do - based on medical advice, of course. Good luck!

PS I was on a forum ride with @si_c once and talking about warfarin. He said that he had analysed a huge amount of data. I'll let him tell you what the results were...

 

[rualexander]

You will have to weigh up the pros n cons of being on blood thinners against risk of clots.

I presume from my limited knowledge these clots can be life threatening if they break free and make their way to heart, lungs or brain?

They can't really make their way to the brain under normal circumstances as they have to go to the lungs first before getting into the arterial system and they will get stuck in the lungs, nor can they enter the heart muscle blood supply for the same reason.
If, however, you have a hole in your heart then a clot can pass through into the arterial system.
And 25% of the population have a form of hole in the heart which can under certain circumstances allow a clot through to the arterial system.

 

[ColinJ]

They can't really make their way to the brain under normal circumstances as they have to go to the lungs first before getting into the arterial system and they will get stuck in the lungs, nor can they enter the heart muscle blood supply for the same reason.
If, however, you have a hole in your heart then a clot can pass through into the arterial system.
And 25% of the population have a form of hole in the heart which can under certain circumstances allow a clot through to the arterial system.

I have been wondering about that for 10 years!

Yikes - I am amazed at how many people have hearts with (unwanted) holes in...

 

[rualexander]

I have been wondering about that for 10 years!

Yikes - I am amazed at how many people have hearts with (unwanted) holes in...

https://www.nature.com/articles/nrdp201586

Many are not what might normally be thought of as holes but more like flaps that can open under pressure caused by coughing or straining etc.

 

[AlanW]

He already HAS!

And the original GP advice was...

When I had my first DVT, it caused a very serious pulmonary embolism which almost finished me off. I was on warfarin for 8 months and then the consultant said that he wanted me to stop taking it because the increased risk of bleeding 'probably' outweighed the risk of another clot.

I was fearful and asked if I would be tested regularly to see if I was starting to clot again? No. How would they know if it happened then? I would get ill again...

4 months after coming off warfarin I had my second pulmonary embolism, so... back on warfarin.

One year later, the consultant called me in again and simply said... Your choice - stick with the increased bleeding risk, or take an increased clotting risk?

Since I had already demonstrated that I was very good at clotting but had never had bleeding problems, I would take the bleeding risk, ta very much. So far, no bleeding problems.

10 years now since my first DVT/PE and I have been on warfarin since the second PE in 2013.

I actually think that I have suffered a third DVT/minor PE over the past few weeks. I got a very sharp cramp-like pain in my left calf (same leg as both times before). It wasn't cramp though because my calf was badly swollen, and a varicose vein was bulging. The leg has been more uncomfortable than usual since then, but the swelling has now reduced so I think the warfarin is helping. I definitely would NOT want to be off anti-coagulation with this going on!!!

At the time, I was given the choice of warfarin or one of the new anticoagulants. I decided to go for the tried-and-tested while doctors got more experience with the new drugs. If I were starting again now, I would probably go for the new drug so I didn't have to have regular blood tests and be quite so careful with my diet.

Ultimately, it is a personal choice what to do - based on medical advice, of course. Good luck!

PS I was on a forum ride with @si_c once and talking about warfarin. He said that he had analysed a huge amount of data. I'll let him tell you what the results were...

Thanks for taking the time to share your experience @ColinJ , a really interesting read. I'm still waiting to speak to the hematologist at the hospital as to my next move.
However, what is interesting and after reading some of the info from other forum members and a bit more background to my own situation, I have had pneumonia twice in the past, the last time being circa eight years ago. At the start of last week when out riding I was short of breath and wheezing but only when applying a little effort. Got to mid week and thought it may be COVID, but the results suggested not, did more tests over the following three days, still negative.
Went out Saturday with the local group and suffered like a dog, got dropped on every single climb, which isn't me at all! The net result was the need to contact 111 Saturday evening. An emergency doctor called me back a number of hours later and without examination decided it was pneumonia again and put me on a strong course of antibiotics.
Fast forward a week and now I have another DVT, and I'm still getting slightly breathless when ascending stairs etc. So I wonder now if something hasn't pasted into my lungs that is causing the breathing issue? The GP (two in fact) checked me over on Tuesday and I told them about the breathing and the need to call 111 and they didn't seem overly concerned about the breathing, but of course concerned about the DVT.
I am not booked in to have a blood test till next Wednesday, but I think I may give the doctor a call this morning and just air my concerns.

 

[fossyant]

Thanks for taking the time to share your experience @ColinJ , a really interesting read. I'm still waiting to speak to the hematologist at the hospital as to my next move.
However, what is interesting and after reading some of the info from other forum members and a bit more background to my own situation, I have had pneumonia twice in the past, the last time being circa eight years ago. At the start of last week when out riding I was short of breath and wheezing but only when applying a little effort. Got to mid week and thought it may be COVID, but the results suggested not, did more tests over the following three days, still negative.
Went out Saturday with the local group and suffered like a dog, got dropped on every single climb, which isnt me at all! The net result was the need to contact 111 Saturday evening. An emergency doctor called be back a number of hours later and without examination decided it was pneumonia again and put me on a strong course of antibiotics.
Fast forward a week and now I have another DVT, and I'm still getting slightly breathless when ascending stairs etc. So I wonder now if something hasnt pasted into my lungs that is causing the breathing issue? The GP (two in fact) checked me over on Tuesday and I told them about the breathing and the need to call 111 and they didint seem overly concerned about the breathing, but of course concerned about the DVT.
I am not booked in to have a blood test till next Wednesday, but I think I may give the doctor a call this morning and just air my concerns.

A&E now - quickly. Just go.

 

[AlanW]

A&E now - quickly. Just go.

Waiting for a CT scan as l type