I asked for my full CT angiogram report so I can show it to Dr Hunter before my consultation about mini maze. And unbeknownst to be it showed mild mitral valve prolapse and dilated left atrium and appendage.
As well as coronary disease. I feel like I can’t get a win ! Another punch to the face so to speak. Obviously again even more worried what with coronary disease and AF and now a dilated atrium. Worried I can’t get the mini maze now or laa clip. Feeling fed up with another knock back. My echo showed structurally normal heart I was pleased with that. Now the CT shows this plus it wasn’t mentioned in my letter ? Is that because they felt it wasn’t significant ?
Anyone else have this ? feel like each diagnosis is taking years off my life expectancy and increase all my risks.
All positive advice welcome.
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Dadtoalad23
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Most people have some regurgitation of their valves. Most people with AF will have a dilated left atrium. Goes with the territory . Wait till you have your consultation.
Hi! My consultant is an EP. He decided that I needed a complete lesion set and brought Steven Hunter in to do the surgery.
I don’t know anything about him, but Dr Abhay Bajpai who spoke at the last Surrey asg said they do the same procedure I had at St George’s. He didn’t say how often!
I think I’m lucky for all the treatment I’ve had. I’ve got a few heroes, and heroines!
That's too true! Another EP here told me that what mine was doing was 'controversial' !! How do they learn from each other and other cardiology specialisms and move forward?
Like Speed below, my heart and valve condition has also been better when I've had less af. I've therefore continued to say that I would like whatever treatment can be made available to me for my af, even if its ' controversial '!
It concerns me that the recent NICE patient choices sheet moves from ablation to pace/ablate without mentioning other options. To me, this is wrong.
wholeheartedly agree!! Mini maze should be offered before pace and ablate. I understand 10 years ago the risks may have been higher for surgery but not now
I had moderately enlarged atrium and a slight valve leak (common as afib puts strain on valves) he performed mini maze on me in May. His view on my valve was it won’t now get worse. I don’t think what you are describing is that unusual.
Well it’s entirely thanks to you for putting me onto Mr Hunter ! Your research has been extremely helpful. I’ve now read a lot about Mr Hunter and Wolf. It’s reassuring to hear these comments as it was a shock to hear my atrium is enlarged, my EP Mr Ullah hadn’t mentioned it at all and it didn’t come up on my echo. I’ve also watched Saul’s progress and have messaged him about Japan. This group is amazing, it’s an absolute god send for information and reassurance and support.
I am over the moon for Saul! Dr O certainly is a talented surgeon too! We don’t have enough Dr Wolf’s/Dr O/Mr Hunters. I really do wish there were more. Good luck and I honestly don’t think that your enlarged atrium etc will preclude you from having a mini maze. Please keep in touch.
Not yet I’m going to chase them this week, didn’t seem much point between Christmas and new year. Plus I’ve had the dreaded cold/flu thing going round nearly finished the antibiotics and steroids now. Partner it trying to convince me it’s a good thing it was cancelled as I came down with this 2 days after scheduled surgery date. Let use know how you get on I’ve got everything crossed for you( well everything that still crosses at my age)
I will certainly keep you posted. I think your partner was completely right, would of been horrendous coming down with that flu post op and now you’ve had it you should have great protection for the rest of the winter.
I’m trying to practice amore fati (love fate) part of stoic philosophy also coined by Nietzsche, it’s acceptance of fate even grateful for fate. Tbh it’s bloody difficult especially for all of us with chronic illness! Loving my heart conditions is a bit of a stretch but hopefully acceptance will happen. But yeah maybe that flu was actually perfectly timed ?!
Hope your date is soon … keep us posted and good luck to you also 🤞🏼
Fate has most definitely helped my life in the last year. Sometimes in ways that initially seemed the opposite. For example, if an old shoulder injury hadn’t squashed the vein being used for pacemaker leads prior to pace and ablate, I would have had this procedure instead of the 2nd and 3 Rd ablation which were then offered as an alternative by a new EP. This has so far been successful4 months down the line.
At the time zi was disappointed that the pacemaker insertion had failed but now I am just grateful to have been given another shot at ablation first. X
I appear to have been very lucky - my Angiogram was presented to me whilst waiting for the opening heal up so it just needed a plaster. The Doctor came in with printed material showing my results in all aspects with explainations of each and the necessary procedures to correct the issues.
Mine was a CT angiogram. Standard angiogram then i think it’s explained there and then and even if needed stents inserted ? I had to wait a few weeks and then wasn’t even given the full report. Was just told about the coronary disease and not the structural issue.
Well, you can ask for the full report. Contact the hospital PALS and ask for a copy of your notes. I’ve not long received my notes for my OHS and post surgery complications, along with CT Scans, MRI & X-Rays. What has made it even more interesting is having my daughter (who’s a nurse) explain it all to me. It’s quite interesting how much you’re not told due to the intense nature of the jargon and how long it takes to convert it in to lay terms that we can understand 🥴
indeed! I got my full report from the consultants secretary upon requesting it. It makes no sense that patients have to jump through hoops to have any diagnostic records. It’s also wrong that patients have to search for information and answers to even understand their results. In an ideal world the diagnostics would be explained fully by the relevant consultant, as well as questions answered.
My understanding of my own condition of permanent AFlutter was that with the L Atrim beating constantly at 300 BPM, like any muscle exercising more than normal, it grows bigger. This happens whilst the rest of the heart remains as normal. This distorts the heart and as a result, my mild mitral valve regurgitation (leak) increased to moderate. On having my ablation (note to previous poster that for me, an enlarged L Atrium did not prevent an ablation), and after time out of permanent Flutter (3-6 mths ?), my L Atrium returned to normal size and the valve regurgitation returned from moderate to mild. I presume this is pretty normal.
A little knowledge can be a dangerous thing. Generally, best practice for a detailed report would be to have it explained by a competent professional, detailing content with context and implications and being able to answer any questions with the ability to timely answer any subsequent questions not thought of at the time. Otherwise, patients potentially can either unduly worry because the see medical names / terms they do not understand and think the worst or rely on Dr Google and opinions of unqualified people which might be out of context.
Personally I have always requested as much info / reports at the time as possible, though I’m not quick to jump to conclusions and always seek informed advice / opinion (it helps my sister is a very experienced nurse). Often I’m not permitted, but understand why as above.
One other point: I always asked for a copy of my ECG from the nurse taking it when at one of my hospitals. It used to give a brief summary of the machine’s observations snd possible diagnosis. Recently, the ECG print outs no longer have this summary. When I asked, I was told they had removed this because some junior doctors were taking the machine’s explanation as given and not reviewing the chart itself. As such, full diagnosis could be missed and junior doctors may not be learning now to interpret ECG traces.
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