I am sure I am not the only one who has been saddened by the recent heated discussions on the mini maze.
I live in the U.K. and have recently had a mini maze where this is currently a lesser known and used procedure.
Catheter ablations (and meds) are the standard in the U.K. and Catheter ablations have superb success rates in the earlier stages of afib. There are loads of research reports available that back this up. For persistent afib then if open heart surgery is being done anyway a full maze is performed, only in a small number of NHS trusts is a mini maze or hybrid offered. This is changing and more trusts are training up.
I shared this EP training session (U.K.) from April already but thought now given the debate that some of you may find it helpful. There is a lot of research discussed in this training as well as when each procedure is most beneficial. The sessions are short so easy to watch.
Maybe it’s my forum name MummyLuv but let’s love and respect each other, knowledge is power and the more knowledge that we can share the better informed we all are (even if we don’t agree with it).
Here’s to NSR for us all, however gained 😘
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I’m doing brilliantly thank you! Still a couple of months of blanking to go through before Amiodarone is removed then I’ll know for sure 😂. Thank you for asking. Hope you are well too x
I am studiously and laboriously working at getting my thyroid right. Having felt rubbish for weeks recently I suddenly realised that I felt over-dosed and so I'm reducing the amount I'm taking to see if it helps. I skipped some yesterday to give myself a head start on the next dose change and I'm pretty good today. Maybe I'm on to something! Wish me luck.
I'm so interested in your case. Are you able to do more now or do you still need to take everything very easy while the blanking goes on? If so, that much be hard with 2 kids who need a lot of attention.
I am much more able now. I am about to start back doing higher cardio exercise (Zumba which I use to love). The only thing I am careful of now is lifting heavy things but I’m not far off that now as my wounds are almost fully healed.
Things I notice have gone too
- no longer out of breath
- no longer having hot flushes
- no longer wake feeling shattered
- no longer have dizzy spells
- horrible headache/aura has gone
- no more multiple trips to the loo during the night! I can sleep right through undisturbed (unless by my kids 😂)
I had a few wee bumps which I documented at my one month point on here but all is good
I get sweats with afib too . Even when just lying in bed. I can sleep during an episode but often wake up "sweating cobs" as my Mum used to say. I never found out what cobs were!
The issue with the post was the OPs repeated statements that ablations do not work which potentially was going to upset and worry those who have been or who are planning one. For the majority on the forum an ablation is all that’s on offer so dismissing them as useless is not helpful.
Just make a smile I thought I would share I am a grandmother this morning. It was not planned it was not supposed to happen but it did. An outdoor kitty that I have fallen in love with Delivered four beautiful babies on the front porch in a pop-up crate for me this morning. The minute she ran to me when I stepped out the door I knew she looked not pregnant. We know who the daddy is as Maury Povich would say yes Lil dude you are the father lol mother is black from a black and white family daddy is charcoal gray also from a black and white family. Melting pots can be beautiful things
FYI Weenie let me hold her for a second then left me babysitting while she stretched her legs and eight lol
Ablations DO work. My last one worked for 15 months and it is still holding strong as is my first one. The problem with a fib it’s not what has been done but when a new spot starts to fire off. I suggest people that don’t think they work do a little bit more reading. Again none of us are the same and perhaps some have more of a weakness to having more spots fire off. The people who have had them or are going to have them should not worry and should not pay attention. Who is this person or who are these people making such a statement? Have faith in your doctor he’s not going to stand in the OR with you for many many hours for nothing. Again we can have open minds and listen to people but remember where it’s coming from and remember who your medical care team is. I have faith in my doctor that’s all I need.
Hi Wonderful everything is still going well for you! A real beacon of hope for persistant Afib sufferers .
I don't think there was any intentional disagreement on the post you referred to ( from what I read). A member (hope I remember right) was just pointing out to Bambi that ablations still have their place and are effective especially for Paradoxal Afib and Flutter to name a couple and that her opinion could worry ( unintentionally) or even put people off trying for an ablation . The WMM sounds like a godsend but is financially out of the reach of many, many sufferers. But a day will come hopefully 🙂. In the meantime Cryro and RF ablations continue to help many people and the WMM gives hope to those with stubborn cases. Medicine is wonderful!
I see you are in Israel, so I will give you an idea of the costs in mainland Europe which I and another member on here were quoted as self pay patients. The main chunk of the difference in cost here is the private hospital you choose as the first 24 hours are in ICU which is not required with a catheter ablation, the surgeon costs themselves are a small part c10%.. Catheter ablation at the Bordeaux clinic c. €20k (I am sure you could get this cheaper in other clinics but wanted to give a comparison with a very skilled catheter team) , mini maze in the Netherlands or Germany €30k, mini maze in Switzerland €40k. Huge caveat, I am not a rep of any of these hospitals just sharing to provide an idea of cost. I don’t have the final hospital costs yet for U.K. but will be happy to share when all the bills are received,
I do not know if there is a surgeon in Israel or how your healthcare there works.
P.s.by comparison I was quoted $100k (if short hospital stay and without complications) to $150k for the Wolf mini maze, this included things like Linq insertion and monitoring which are not readily used in Europe. Dr Wolf himself is frustrated at how high this is and continues to try to get the hospital to reduce costs to make it more accessible. I think Dr O in Japan Is considerably cheaper for the same procedure but I personally did not get a quote. saulger do you know a rough range?
Sandi messaged me that she will try to find out from the NZ lady what Dr Ohtsuka typically charges. I know it to be in the range that you mentioned in Europe.
Sandi wrote that Dr Ohtsuka would prefer patients to keep this information confidential. If Jpot34 is interested (I messaged her in Hebrew) and can let her have Dr Ohtsuka's email.
I can understand why Saul as the cost varies widely per patient depending on how things go. My UK cost will be less than Bupa are expecting as I was in hospital less than the average person. Others will pay more. All of the rates above are indicative I have shared as I think it’s important people get a rough idea. Pls don’t anyone tie me to them 😂😂
I live in France. I'm having an RF ablation in July in a clinic ( just following the EP didn't particularly want a clinic). The whole package with 2 nights in my own room isJust under 2, 000 pounds!! I don't have private health insurance. But I do live here and am in the system. Heart problems along with other pathologies like cancer or diabetes are reimbursed quite heftily or even free. I thought they'd missed off a zero 😂
Thanks! At least I now know because of your posts that if my ablation doesn't work there is always hope for another treatment that seems very effective 🤗x
Wow I had no idea how your Medical care works there I am very thankful for what I have. I saw the cost of my ablation‘s both cryo and RF and with everything just involving the Hospital each one was 250 K that did not include Surgeon etc. thankfully all I had to pay was $50 when I checked in. I am in the US and I had an HMO at that time. Living in Texas our plans are different. I do not know what the cost was of this procedure I can only imagine but for me it was capped at $310 when I checked in. My echo next week will cost me $95. I pay less than $200 a month from my insurance and the doctors that sign up to accept this insurance must except what the insurance company pays them.
No one should be denied treatment because of money I think that’s terrible. Coming on this site has definitely opened my eyes.
All of my ablations I was home the same day. After the surgery you are in recovery then released. My latest surgery would have been the same except for a complication and they decided to keep me overnight due to bleeding. It was in bad they just wanted to make sure it stayed that way as I live 2 hrs from the hospital.
Hey MummyLuv you are a treasure trove of information, learnt lots from reading most of your posts, and replys concerning Maze procedure. I am in the process of waiting to see private cardiologist, as self pay patient, to see if I can have maze procedure done to stop AFib which is getting more frequent with very high heart rate, which can last for days. After the attacks, so fatigued and unable to get any quality sleep etc. Have only had it for two half years, not persistent, but really is affecting my quality of life, hiking for many miles a day a thing of the past, planning for future events etc. Not sure if I will qualify for the procedure but have been told by two cardiologists that catheter ablation will not work for me so it's not an option. My only option is medication but don't relish taking the anticoagulants for life because I have been diagnosed with small vessel disease SVD (brain bleed) which was diagnosed before onset of AFib. Over time, on it's own the SVD will get worse but taking anticoagulants long term, with progressive SVD, I am at high risk of having an intra cerebral haemorrhage due to anticoagulant treatment. So hope the situation I am in will be enough to qualify me to be allowed Maze procedure.
Gonna go read some more posts now. You and others here have certainly educated me
Ohh dear me, could be a cardiologist or EP! This is all new to me. Due to my lack of knowledge, I assumed once I got to see, cardiologist or EP and run things by either one of them then they would pass me on to appropriate expert to do the procedure if I qualified. Good thing if all goes accordingly it will be at Liverpool Heart Chest Hospital where this procedure has been done by very qualified surgeons many times. Sure I will sort the mix up, thanks to your advice. Ohh imagine being in permanent NSR. So pleased you have achieved this.
The only surgeon I am aware of who does mini maze in Liverpool is Paul Modi. It’s not his main area of focus, his speciality is minimally invasive and robotic value replacement but he does do afib surgery.
Lol, I did about 6 months of detailed research. I decided to go with Mr Hunter as he does a high volume of these in the UK and I would definitely recommend him but I am fortunate I have bupa cover.
That’s good to hear. I still have to lose some weight before approaching Dr Hunter. Everything seems to be getting in my way. I have some problems with my back and have been advised to have cortisone injections. The surgeon has written to my cardiologist regarding me stopping Dabigatran for 5 days prior. As my AF is pretty active at the moment I am uneasy about it.However, just to complicate things further, I fractured my foot last Thursday, so am now on crutches and have to wear a special shoe thingy. I have been told to rest with my foot elevated. Should hear from fracture clinic this week.
So at the moment, I can’t walk, I can’t drive. I am just stuck indoors.
Oh my goodness! How awful not being able to move around. I hope your fracture heals quickly.
I found the best way to focus my mind was to book my surgery date 😂😂 I’ve added half a staff me since surgery, too many treats. Now back onto watching what I am eating as I am still overweight anyway. X
Hi flapjack, it is already in a small number of trusts, Sheffield, Liverpool, Plymouth, Oxford (1 surgeon in each) and there are 4 surgeons in London. I think I came across a surgeon in Newcastle too but need to dig that one out. These are mainly hybrid procedures. Start with a mini maze and if needed 3 months later a catheter ablation only if necessary, usually to create the final parts of the cox iv maze or to deal with aflutter. Most people don’t need this. Hybrid is the process I am following.
My local trust are currently training in the surgical side of hybrid working with a hospital in the Netherlands and I am sure they won’t be the only ones.
In comparison to catheter ablation there is very little equipment needed. It’s about the learning of the skills from open heart maze (of which many surgeons are doing In the UK) to doing it by keyhole.
I look forward to this becoming more widely available for those in persistent or permanent afib who want to go down this route.
Hi flapjack, I looked back at my research and there is indeed a surgeon in Newcastle, there are also surgeons in Bristol, Wolverhampton, Exeter all on NHS. There are just ones I found, I am sure there will be more around the country.
That’s really interesting about your local trust - I’m in Edinburgh, and think you’re in this area too? Having said that, I’m very much at the beginning of all this. At least it’s only recently been diagnosed, though I suspect it is longer-standing. I will need to see what Cardiology advise - just next month now. I’ve really appreciated this forum in the gap between diagnosis, and the Cardiology appointment.
Hi cat, yes I am in Edinburgh. It’s very exciting for us I think that cardiology have partnered with Bart Masen in the Netherlands. It would be too late for me by the time they are ready as I was already 5 years plus persistent.
Hopefully you won’t be facing this type of surgery though, maybe not even catheter ablation. There is a good EP who advises the Scottish Government and seems to have trained even the private cardiologists I saw in Scotland, Neil Grubb, is that who you are seeing?
No, though I recognise the name. I’m seeing Dr Lang, who also has a good reputation I believe.It is good to know that the new techniques will be there for those that need them though.
That’s good to know, thanks! I must have met him 10 years ago, I had some tests after an odd ECG. Have a letter to say that everything was fine on the echo, so nothing to worry about at that point, and it has his name.I think I had the ECG after my sisters having AFib (perils of being the youngest by 10 years). I must have had something that worried me. I know that more recently I’ve had dizziness, then tests following a retinal vein occlusion.
It took the Apple Watch to detect it in the end. I’m relieved to be on anticoagulants now, though not as keen on the dronedarone.
Hi MummyLuv Pleased to hear your recovery is going well and you have your life back again! I'm in a second bout of persistent AF and totally b**gered.. First bout lasted 6mths until DCCV put me back into NSR for a lovely 8mths until...whoosh! Waiting next DCCV but it seems very inefficient (for me and NHS) having multiple procedures when maze procedures seem so much more effective and probably ultimately more cost effective, consequently I'm looking round for options ideally Oxford area. You refer to the OxfordUH Trust above.. do you have the name of the particular surgeon referenced? I'm currently under the Arrhythmia Clinic at the John Radcliffe with Dr Yaver Bashir as my consultant, though I only ever have contact with the Arrythmia Nurses. Is working through Dr Bashir my route into a referral or is a direct approach more likely to yield results? Thanks for your continued support to this group.. Pete
I was offered the Hybrid Convergent Ablation, which is similar, in Coventry, until they discovered a mitral valve problem. Now supposed to he having the Cox IV Maze when they repair the valve.
Another centre that does it it’d be great to start a reference somewhere on site as I bet there are more NHS trusts than we realise. I look forward to you being out the other side of surgery x
Totally agree. I innocently started all that by pointing out that the Wolf procedure had no peer reviewed clinical papers even though I contacted Dr W himself. This was just a statement of fact, but as often on the web, people chose to misinterpret it as if I was saying WMM didn't work when I never said that and I constantly made that point during the following exchanges before giving up and leaving others to squabble.Glad MM went so well xx
You are so right, every post in the couple of recent heated debates will have been well intentioned I am absolutely sure and sometimes we need to step back and remember that. Now I am going to change my forum name to Grannyluv 😂😂😂
Not quite. If I remember correctly, you doubted Dr Wolf's integrity by bringing up that Dr Wolf did not mention in a publication that he was the co-inventor of the atriCure clamp, that is used by most surgeons for AF and valve repair procedures.
I did mention that the prestigious British Medical Journal had retracted some of his articles over that omission. Throughout I said I was not doubting his integrity merely saying I could not find any clinical studies. But I don't think this is the right place to rehash all that, do you? Best I'd health J xx
I've always read your posts with great interest and found them very informative but I think that some folk can come across as a bit evangelical in their approach, whether intended or not. I think this is what can then lead to worry and upset when people then believe that their treatment wont be successful, because they are being told they have inferior procedures.
It's the way that things are worded sometimes which causes the issue.
There are some amazing people on the forum, whatever their nationality and I'm hugely appreciative of the help I've been giv.I joined the BHF forum as I've got to have a valve repair and thought it would be as nice, friendly and informative, as here but it was awful with folk ripping chunks out of each other so I left after a couple of days.
As I said, sometimes it's not the message, it's the delivery and that applies to both sides of the coin.........or The Pond.😊
I know what you mean.I said "Brash Yankee" ironically because that was inferred.
I love all and serve all.
Is it OK to forensically analyse the post by Bambi to determine that it was not written by her because it was too sophisticated for her, based on her previous writing style?
Is it right to claim that "the plot thickens" as if Hercules Poirot discovered an intent to deceive.
No, not all folks are as kind as Jean or PottyPete on this forum, and not all people are as helpful as them and BobD and MummyLuv.
There are some who just promote their views and get shirty when their advice is confronted.
I agree, it’s how things are written and then received. It made me sad to see people upset. This is a great forum with loads of experience and I’ve felt since I joined there’s loads of experience across the whole afib spectrum and a willingness to share and not judge. I joined another forum on here and left after a week, definitely not the same feel! Infact I saw someone comment on it a few weeks ago and also leave 🥲
I guess I missed that but what a shame we should keep our minds open and realize also that there is no procedure that works the same for everyone. As you mention there are different stages things can be done. If I had any valve issues or blockages I would not have been considered as good of a candidate. I am also a little bit older than many of them. Respect what we have to say here. It sounds like some might be better that they either cannot get a particular procedure or it did not work the same for them. You have to realize that a fib can pop out anywhere in there it is what it is that’s why they say there is no cure. There are very few people who are perfect health specimens so unless you are then a fib is more likely to act up. No one is perfect and on here at least agree to disagree and let it go. I truly dislike people that will not look at other points of view . Mummy Luv you look fabulous and I know you’re feeling well so you know it worked. Shame on the sour grapes out here just ignore them. I am pretty sure we are supposed to share our points of view and experience not cram it down anyone’s throat. Big hugs you are a shining example of your procedure done. I’m trying to catch up with you with mine.
I truly appreciate your story, and how you communicate and represent the procedure you had. You are informative, and accurate. While at the same time make it known that not all AFib patients, persistent or otherwise need the procedure you had. Regarding the recent post you are referencing, yes, it became quite heated. I have no problem, whatsoever, of people presenting what worked for them. That is what you have done repeatedly. I do take issue when I read postings such as the one Bambi posted that misrepresent truth. I questioned a couple of different comments she made. Such as blood thinners are only 60% effective against stroke. A statement Dr Wolf and other WMM patients quote, without any source of reference to that statistic. A statistic that might make many people on an OAC fearful of having an AFib stroke. Or for those who have already had a stroke, like me, to live in fear of another one. The makers of Eliquis put out literature that differ in that statistic, and present studies to back up their claims. I also questioned comments she made regarding the atrial clip and Watchman. She simply does not always have her facts straight. I think, people come to this forum expecting to read accurate research, along with proper representation of procedures. At least I did. If I state something that isn't factual I expect, with kindness of course, to be corrected. 😊
This information as presented is extremely helpful and provides a balanced view. I’m sure that everyone who has experienced a MiniMaze realises that unfortunately, it’s unlikely to be available to people of ordinary means for some time and given the current climate economic climate, it’s probably not realistic to expect it to become available on the NHS for some time to come. For people with complex, persistent AF it’s likely to offer the best possible solution. In the meantime, as you say it is important to remember that Catheter Ablation(s) will continue to be probably the best way for folk to control their symptoms and get their lives back. I guess the two very different healthcare systems in operation here in the UK and in the States has not helped in the earlier discussions, hopefully that will now change.
Flapjack, I agree (although am hopeful that the NHS will not take that long) and actually what the research shows as you will know is that for paroxysmal especiallywhere the burden is light, catheter ablation alone has as good a success rate.
The only reason in my view someone would seek out a mini maze/hybrid rather than catheter with paroxysmal is if they can’t take blood thinners or have a medical reason that catheter/meds is not possible. I think the EP conference lays this out well, based on fact. It is also very honest that the reason EPs haven’t recommended surgery for persistent to date is that they are focussed on their own solutions.
I hope we are celebrating many more catheter successes and in time hybrid/maze successes on this forum 🤞❤️🩹
Hi Jaws. I too live in Scotland and I’m not aware of any hospital offering hybrid or mini maze here. Edinburgh royal are currently training in hybrid but that will take time.
I don’t know if private is within your reach but if so I can provide details of my surgeon.
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Wolf Mini Maze
