Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
I am so pleased to have found this support group and forum.
I wish to establish amongst the experiences of members the accuracy of CT scans in the diagnosis of a PE.
My reason for this is due to a flippant comment made to me by my GP, during a consult post my PE diagnosis.
Background to my issues:
I suffered a provoked DVT in my right leg following orthopaedic surgery to my right knee. This was in 1990.
Following this incident, I was unfortunate to suffer further DVT's and two PE's, all unprovoked.
In November 2014, I was presented to A and E with the symptoms all too familiar with me regarding my previous experiences of DVT and PE's.
A CT scan was positive for a PE.
My health was not great post the diagnosis, resulting in an investigation for pulmonary hypertension.
I was back and forth to my GP, who openly expressed her frustration with me that 'it is all in the mind' and that nothing more could be done to manage my diagnosis.
It was during one particular consultation that she advised me that she had telephoned the specialists who had diagnosed my PE post the CT scan. Apparently, the specialists advised (according to my GP) that they were not certain whether it was a PE or past scar tissue.
Obviously, this has implications for me, as I am now on lifelong anticoagulation (Apixaban). Therefore, if it is only scar tissue and not a PE, I should not be taking Anticoagulation.
Obviously, I had all of the symptoms associated with a PE and past history. I am more than happy to be taking Anticoagulation if I did have a PE.
Can anyone shed any light on the accuracy of CT scans, together with the ability of the Consultants to determine the difference between a PE and scar tissue?
Such advice would provide me with peace of mind!
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
I think the radiologist who reads the scans is the one who determines whether clots are old, new, scar tissue, etc. CTs are usually pretty accurate but there can be times where it's not absolute.
Can you order your medical records or contact the specialist to get the info first hand?
The thought of obtaining my medical records is an option that I am considering..
I do have written confirmation from the hospital that the CT scan was positive for a PE.
Unfortunately, my GP's comment has left me feeling a tad uneasy!
Prior to this latest episode, I was 'clot free' for a number of years and not taking any Anticoagulation.
However, my symptoms leading up to the CT scan lead me to believe that the official diagnosis was correct.
Just need to establish the accuracy of radiologists in interpreting the scans!
Thank you for taking the time to respond! I do appreciate it!
I'm not sure how they'd distinguish PEs from scar tissue in the lungs. With a DVT, it is usually chalked up to "squishiness"--and that can be tested during the scan. I know less about CTs and PEs, although one would hope that the specialist could tell.
I do remember that I had two CTs about five weeks apart with my PEs. In the second CT, they could tell that the clots were mostly gone, but that I still had some remants/webbing in my lungs where they hadn't completely resolved. If they can see stuff like that, I'd hope they'd be able to provide some insight on whether the clots are old or new.
Have you had any lung CTs between 1990ish and the recent round? That would help establish if you had scar tissue from before. Also, once you start feeling better, maybe a repeat CT would establish if the clots are old or new. If they're gone, they probably weren't scar tissue!
I would second the idea of contacting the specialist to get the info first hand.
P.S. It sounds like you have a somewhat contentious relationship with your GP--I'd dump her and see if you can move to a different doc ASAP. No reason to put up with that!
But they can compare scans and make certain assumptions on what's acute, what's likely old or chronic or scar tissue. Not always but often. And that is usually documented in the radiologist notes after he/she reads the scan.
I think that I will contact the hospital for a more comprehensive diagnosis, just for peace of mind.
In defence of my GP, I think that, in her own way, she was trying to reassure me that I was clear of pulmonary hypertension.
I have recently moved to a different part of the country, forcing me to change my GP, so it will be interesting to see how that relationship develops.
Best wishes to you all!
I revisited the medical and hospital documentation that I have in my possession. Revisiting this has reassured me a little.
The initial CT scan result from November 2014 was positive for a PE in the right lower lobe..
My subsequent ill health and further investigations resulted in a further CT scan.
Interestingly, this scan revealed a 2mm calcium nodule (granuloma) in the right upper love - but no evidence of any further episode of a PE.
I have to assume that my initial diagnosis was conclusive and not scar tissue!!
Many thanks for your excellent advice!!