Now first of all my Cardio is a lovely and caring man. I get on with him very well.
The good news is I'm still in sinus (maybe 3 or 4 months now) so I'm well happy. But we did have a few differences of opinion though about certain matters.
It never ceases to amaze me that Cardiologists (top of the tree) don't keep up to date and make simple errors. I mentioned a few and he checked on his computer - I think he'll double-check some things when he gets home.
Motto. Check some things for yourself. Not on some Micky Mouse websites online but reputable sources such as medical journals or HU.
Enough said.
Paul
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Hmm, not too sure what you're talking about here Paul? I guess you're trying to be discreet, but a little too discreet to the extent I'm not too sure what you're saying. Is it that you knew things that were correct about AF that he didn't? In his defense cardiologists have a good knowledge of AF but aren't experts on the rhythm aspect. Whereas they're ace at saving lives if you have a heart attack or blockage.
Actually Jean one of the things I said was about a member of this forum! No names were mentioned of course. I said if I return to afib then the Wolf Mini Maze would be my go-to. My Cardio said he had never heard of it?????? He said ablation would be the way to go. I said this is too hit-and-miss for me. I explained that I know of someone who has 4 and is still in permanent afib. He commented that if the WMM is so good why doesn't the person have the procedure? I explained that the person is in permanent afib and accepts it - he/she doesn't want to go through any more treatments and be subjected to this ordeal anymore
No names were mentioned nor were any references to HU.
Ah I see, yes odd that your cardiologist had never heard of the mini maze. Or was it just the Wolf Mini Maze he hadn't heard of? I guess they may get so bogged down with the procedures they do and seeing patients, that they're not aware of new procedures being carried out. Strange he didn't know of it though isn't it!
In your doctor's defense, there is no such thing as the Wolf Mini Maze (WMM) in medical literature. It was a moniker that one of his patients gave to the procedure and it stuck with his devotees. Wolf does a Mini Maze. Now if your doctor never heard of a Mini Maze, he should, but not overly surprised because they are not as popular or prevalent as catheter ablations and require a surgeon and not an ep. Moreover, the are not done by ep's and their associated cardiologists. They are done by surgeons. This happens a lot in medicine unfortunately. If a doctor or hospital doesn't do a particular procedure they either don't know about it, or frequently don't refer someone to it.
Thanks. Paul. I'm going to retract some of what I said, not base solely on a wiki, but from other sources. I still stick to the fact that the name originated from one of his patients and stuck, however WMM is mentioned in the literature, so I stand corrected
Paulbounce Thanks for posting the Wiki article. Good info. And a good reading list of references at the end. I would encourage all to bookmark that wiki page and read those articles. Though wiki has a rep of sometimes being not reliable, those references are legit, though somewhat dated. More recent articles are likely available.
Actually somewhat meaningless, but it is noted that a citation is needed for the name Wolf Mini Maze as mentioned by mjames1
No doubt about the testimonies of numerous patients of Dr Wolf of the procedure's success. . The articles below are from 2007/2008. Best to search for more recent articles which may present updated results.
it can be said that reported short-term freedom from atrial fibrillation following the radiofrequency ("Wolf") procedure ranges from 67% to 91% [6][7][9] with longer-term results in a similar range, but limited primarily to patients with paroxysmal atrial fibrillation.[16][17]
As I understand, MummyLuv 's Doctor Steven Hunter specializes in a maze procedure and accepts persistent afib patients. The video of Dr Hunter she posted awhile back presents a very professional, knowledgeable doctor who one can trust.
that’s a good article but biased to those who have contributed to it.
I’m not at all surprised your EP hadn’t heard of mini maze never mind WMM. Mine hadn’t and advised me not to do it as it was a ‘novel’ procedure. It’s not mentioned in NICE guidelines and very few cardio thoracic surgeons can do the minimally invasive procedure, lots do on pump full maze by open heart.
It is now excepted by NICE ML. I can point some links to show this but they are easy to find.
Please don't take this in the wrong way. I will say though if your EP has not heard of the MiniMaze I would consider a change of EP. The same applies to my Cardio who seemed a little puzzled about the whole thing.
you’ll go through a lot of EPs there Paul if you are looking for one who has heard of mini maze or hybrid 😂😂
Off the look at the NICE guidelines. Last one I read was from years ago. Said mini maze was promising but didn’t write into the guidelines as first line treatment . If they have been updated that is awesome news!!
mav7: I'm in the States, and, yes, baseball fan. Silly me, though, after making the Tommy John reference, I remembered that most of the folks on this forum are in the U.K., and might not have any idea what I'm talking about!
I found the new Auckland senior Heart Specialist who had done ablation, wasn't interested listening to my story which will tell him a lot about me.
So the report told that I "took over the conversation for a lot of the appointment". But if he had listened he would have learnt things.
Then he had the ordascity to say that I wasn't taking my PRADAXA when I said I had. He put this in his report which annoyed me and had a copy of my May 3 mths prescription placed in my file!
Listening is in fact an important trait. Lots of men don't have it.
cheri jOY
Research says that sometimes ablation in fact ablates an existing scar.
Sounds like you updating him Paul. 👍😊 Well done you. I always say thank heavens for the Internet..... I remember the time before it existed & accessing information was far more tricky!
Ty Wavey. They sure as hell don't like it when you pick 'em off on stuff.
Have a great day.
Paul
Like Jean, I wasn’t sure of the point you are making either Paul but in all honesty, I don’t think you should be surprised about the lack of knowledge here in the UK regarding procedures which have been developed in the USA and apparently not available or perhaps not even recognised here. Over the last year or so, we have heard a lot of interesting stuff about the WMM but it’s almost always from the same contributors who are clearly quite passionate about the procedure. Nothing wrong with that of course, but unless cardiologists and /or EP’s around Europe and the UK regularly tune into HU, I doubt they would know anything about it. Rightly or wrongly, I would have thought that their focus would be on procedures they are able to perform in their respective countries.
In the spring, a video produced by Dr Wolf and Dr O from Japan (no chance of getting his name right I’m afraid) was posted on this forum and I recall Dr Wolf making the point that the WMM procedure was hardly known about in the States. There were also references to how few American EP’s know anything about the procedure. Personally, all I know about the WMM procedure is what I read on this forum. Whenever I have raised it with UK based EP’s/cardiologists it also draws a blank.
Medical advances change all the time. It's the same as the Law - there's something new every week. The trick is to keep up with such changes. This can be hard work and takes time to do - it needs dedication but is the only way to be on the ball.
Thanks for comments Paul. I haven’t ever stopped posting, just had some other issues to deal with. I agree with you (in principle) but I’m not sure how pleased AF patients would be if all our EP’s spent their time trawling over all research documents instead of wiggling their joysticks and doing their best to treat AF patients 😉. As Jim says, MM is a totally different procedure/operation
Hmm, maybe, insofar as the U.K is concerned, if a little less time was devoted to their private practices, EPs would have some capacity to keep updated on developments in the AF field. Otherwise, how is progress ever going to be made if EP’s are too busy “ wiggling their joysticks” to keep abreast of current developments! As an example, I paid to see a top EP a few months ago. During the consultation I mentioned pulsed field ablation as a possibility. I was dismissed out of hand, with it being inferred that the only way to do an ablation “properly” is by rf, which, as it happens, he specialised in doing!
Then find and speak to someone who has some experience in pulsed field ablations. Back in 2018 I had to wait 8 months for an ablation, in some areas waiting times are now double that and more. Whatever the reasons might be and there are many, I think most would prefer them to focus on what they can do to reduce waiting lists rather than research alternatives which they probably wouldn’t be able to provide even if they wanted to…….
Hi FJ. I'm going to cheat a little here with my reply to you (copy and paste). It makes sense though and is food for thought.
Have a great day Paul
I understand your concerns regarding the long waiting times for ablation procedures for atrial fibrillation (AFib). It can be frustrating to experience delays in receiving necessary treatment.
Reducing waiting lists for ablation procedures is indeed a crucial aspect of improving patient care and outcomes. It is essential for healthcare providers and policymakers to focus on strategies that can help alleviate these long waiting times. Some potential approaches to reducing waiting lists may include:
Increased Resources: Allocating more resources, such as funding, equipment, and healthcare personnel, to perform ablation procedures can help increase the capacity for treating patients.
Streamlining Referral Process: Improving the efficiency of the referral process between primary care physicians and specialists can help ensure timely access to appropriate treatment.
Training and Education: Enhancing the training and education of healthcare professionals involved in ablation procedures can help increase the number of skilled practitioners and improve the overall capacity for performing these interventions.
Service Redesign: Optimizing the workflow and operational processes within healthcare systems can lead to improved efficiency, reduced waiting times, and better patient outcomes.
Pulsed-field ablation is an emerging technology for treating AFib. It uses pulsed electric fields to create electrical barriers that block abnormal electrical signals in the heart, potentially eliminating the need for traditional thermal ablation.
Although pulsed field ablation shows promise as a potentially effective treatment for AFib, it is still considered an investigational procedure in many regions. Research and clinical trials are ongoing to evaluate its safety and efficacy compared to traditional ablation techniques. Availability of pulsed-field ablation may vary depending on the healthcare facility and the country in which you reside.
I’m not suggesting they spend every waking hour researching new techniques, obviously but do feel that if I’m consulting with an EP they should , at least, be able to give a broad view of what’s available and their take on the pros and cons of same . Naturally, if I decided to look further into , in this example, pulsed field ablation, then I would consult with an EP who specialises in that.
Funny you should say that. Earlier this year I (privately) consulted a cardiologist who wanted to slam in a pacemaker ASAP, only to find out later that his specialty is “Complex devices and cardiac failure”. I have a healthy heart!
I didn’t know there are differences between cardiologists! Suffice to say I postponed the pacemaker and sought a second opinion with an “EP, Arythmia” specialist. He fully agreed that a PM wasn’t right for me and put me in for an urgent ablation. I’d liked to have been a fly on the wall when that conversation took place between them. The (expensive) lesson me was to do my research. 🫤
I knew it wasn’t the right thing for me Paul - I’m not elderly, my heart is healthy and functioning perfectly when not in AF, plus I’ve never suffered from bradycardia. And he agreed it wouldn’t stop the AF - I’d still be winded and tired when walking up hills or exercising, and there would be a chance of longterm heart damage/ ballooned left atria.
My AF was happening 2-3 times a week, lasting 2-3 days at a time with a HR around 160-180! I really needed that issue sorting out, not a PM fitted. 🤨 I was that close to having the wrong procedure. Phew!!
True! But I’m holding fast to the EP’s comment that they’re confident they “got it all and he doubts I’ll have anymore episodes.” I went into hospital with AF rattling away and I wonder if that would have helped them identify the rogue electrics. 🧐
Sure FJ. I think any Doctor should make an effort to keep up with the latest medical developments though. My friend is a GP and his living room is like a libary with differenet journals etc!
As someone who has recently had a hybrid mini maze, I suggest that change may come from patients and GP’s, so a bottom up. My GP had never heard of the surgery but has been forced to learn to enable her to treat me effectively, ie when my potassium was too high. She’s enthusiastic and fully engaged not sure I need to see her quite so often but think I’ve become a bit of a project for her. When I apologised for being at the surgery so often she poo pooed it and told me she was loving every minute of learning something new. She openly admits that she knew nothing about it as it’s not available in Leicestershire, she had heard of it but nothing more. Now she’s more genned up, and has become a convert questioning why it’s not offered more widely and even surmised that in the future this may be the go to treatment for persist AF. Just wish my original EP in Leicester had been so open to alternatives.
I’ve been great thank you, it was rough for the first month, I think I underestimated the recovery time. I’ve been getting a few pvc but nothing more touch wood.
Reading this through I think one of our issues in modern medicine is the obsession with specialisation. As Jim says, a mini maze is a surgical procedure so requires presumably someone to be a cardiac surgeon and an EP. A consultant cardiologist doesn't necessarily carry out surgery. It's the way our medical hierarchy is organised I'm agreed and it needs overhauling.
Good reminder, thanks Paul. I similarly get on very well with my cardiologist but infallible no. These days when using the NHS or private it is left up to the patient to provide the holistic approach and avoid the trap of relying 100% on any consultant - as well as living in their own silos, my guess is they take on too much work. I have found you have to research, present tactfully your Q's and always keep on good terms. So to generalise for best outcomes, more homework for all🤔.
Hi Secondtry. Yes - keeping on good terms with your Cardio or EP is important. Very much so. So is your 'homework' and let 'em know you have researched. I find they respect you more and take on board what you have to say more so if you do this. Many people just accept what a Doctor tells them - it's not always the correct information (different thread another day).
Do your 'homework' well and always quote authoritative searches.
Hmmmm. Not so sure I agree with that Secondtry. I've had the 'know it all constantants'. I don't pretend to be the smatest guy in the room but I have given a little back. They don't like it but I think it's a better way forward than just accepting what they say.
That's just IMO and they tend to to respect you more as long as it is put forward in a polite and intelligant manner.
I can quote a scenario about surgeons not keeping up with new developments. I was waiting for L4/5 spinal fusion. I was Googling around, as you do and I found an American medical website where they are “fusing” patient’s spines with springs rather than the fixed rods and bone grafts they’ve always used. These allow for natural movement in the spine and don’t cause the consequent damage to the vertebrae and discs above and below the fusion site when they’re forced to take on the extra load of spinal flexion.
Suffice to say, my “top” neuro spine surgeon who lectures all around the world knew nothing about it. I got “the look” from him. 🫤
If it wasn't so serious Dippy it would be laughable. Getting the 'look' from a neurosurgeon who stands to be corrected is a joke. Depending on my mood (I'm pretty laid back 99% of the time) I might have picked him up on that one.
I’m not surprised at your cardiologists lack of knowledge. There a post here recently by a chap who pointed to a top EP at St Bart’s not knowing about the Mini maze operation.
I’ve got a story, might be a bit long, but it all links.
I had an unsuccessful private cardioversion in Dec 2019 by an EP called in at the last minute to replace the one I had consulted with. The EP was most surprised it was unsuccessful. As I was persistent and had been for some while he immediately suggested that a surgical ablation might be the answer, and he would only trust one surgeon in the UK to do it. The surgeon was in Sheffield. He said he knew of two patients that had it done, one of which was successful. Not exactly a ringing endorsement.
After much homework on this site and various other sources I called the operating EP in Jun 2021 and asked him if he had heard of the Wolf Mini Maze where an ablating clamp was used. He said no, so I pointed him at the WMM website and he subsequently came back and said it was just a method with no real benefits over the Cox Maze IV. His response did smack a bit of Dr Wolf being a bit of a crank. So that was his assessment. I pushed him further as to the identity of the ‘only surgeon he would recommend’ in the UK and asked him if this was Mr Hunter and he confirmed it was. He didn’t mention whether Mr Hunter was doing Mini maze as well as full open heart surgical ablations, I don’t think he knew.
Following on from this, I was able to guide Mummyluv in Mr Hunter’s direction and she changed to him from a WMM.
I have been discharged by my NHS EP as untreatable because of an enlarged left atrium. I have pushed my cardiologist to get me another echocardiogram (ahead of the two year cycle) so that I have got something up to date to approach a thoracic surgeon with. She had no knowledge of Mini maze at all, but my reasoning prompted her to bring forward the echo. It is in 3 weeks time.
So there you have it, this unreal internet based site is invaluable in bringing together knowledgable interesting people and exploding the uncertainty and lack of research that exists in the real world of some EP’s and cardiologists.
So there you have it, this unreal internet-based site is invaluable in bringing together knowledgable interesting people and exploding the uncertainty and lack of research that exists in the real world of some EP’s and cardiologists
I remember hearing a story way back from a friend who had left school to serve his apprenticeship at painting and decorating, on his first job he arrived with a paint roller, and was asked what he was going to do with that, they laughed at him because all they used and knew off was a paint brush, the laughing stopped when they seen how quickly he painted his first ceiling,, lol, pays to keep up with the times...
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