What would you do in my shoes? - Atrial Fibrillati...

Atrial Fibrillation Support

31,295 members36,958 posts

What would you do in my shoes?

Iamfuzzyduck profile image
109 Replies

For those who haven't read my profile, back history, 56 year old otherwise healthy female living in Houston, diagnosed with Afib with RVR after throwing up after migraine, have had lots of mini events since (apparently) but not full blown afib. My atria are definitely very kindled now to arrhythmias. So I know I need a procedure to correct it, the sooner the better so I can get on with my life. I can more or less choose my EP here. I have seen one who was the first I could get an appointment with, who seems good but youngish but there is little info on him and he wouldn't tell me how many ablations he has done, just that he has done many (in what, two years? four years? idk), - he can do the ablation in three weeks. I have an appointment with Dr. Wolf at the end of Feb for a consult but I shall probably cancel that as I don't think I want a mini-maze. I also now have an appointment with Dr.Natale in March, the procedure would be performed 2-4 months later so maybe June or July? Should I wait for a world renowned doctor or should I get it over and done with with someone who is good but not that well known? Is there going to be a huge difference between a regular probably good EP in a good hospital and a top EP in a good hospital? What would you do? Time vs quality...

Written by
Iamfuzzyduck profile image
Iamfuzzyduck
To view profiles and participate in discussions please or .
Read more about...
109 Replies
mjames1 profile image
mjames1

"...have had lots of mini events since (apparently) but not full blown afib."

You are either in afib or you're not in afib. Medically there is nothing called " not full blown afib". Have you had an ekg taken of your "mini events"? That would be the only way to know what they are.

As to your treatment approach, that would depend among other things as how badly these arrythmia's are affecting your life.

Wolff promises a one-time fix which ablation does not. Something to consider depending on your buden and specifics. Natale is world class, however his ablation is very aggressive compared to others and often isolates the left atrial closure (LAA), which then most often requires a Watchman device afterwards. Most ep's will not isolate the LAA as part of their ablation approach.

But as to if it matters who does an ablation, the answer is yes. Studies suggest that high-volume centers have the best results. That means your ep should have done not hundreds but thousands and over a 100 in the last year.

Jim

Iamfuzzyduck profile image
Iamfuzzyduck in reply to mjames1

Thanks Jim, the mini events were what was described to me by the EP, ' 140 mini events of afib' in a two week period according to the holter monitor and then 'your heart wasn't letting it go into afib' so I don't know what he meant!! Just that I 'need an ablation'...

What is a watchman? That sounds scary..

mjames1 profile image
mjames1 in reply to Iamfuzzyduck

I don't know what he meant either and if you showed the strips to several ep's, you'd probably get several different takes. So is their nature :)

But putting the Holter results aside, you only mention one afib event. How long ago was that and how did it get resolved? Were you put on any meds and are you still taking them? How are you feeling now?

Watchman is like filter like device inserted by the LAA to help prevent clots. If successful, most ep's will let you stop taking thinners, but you may have to take low dose aspirin for life.

Jim

Iamfuzzyduck profile image
Iamfuzzyduck in reply to mjames1

I may have had prior eventsin similar circumstances before I had an Apple Watch but i threw up after a migraine and my heart went beserk, I checked my apple watch and it said afib, I waited two days and went to the urgent care snd they called an ambulance on me! In ER they pumped me full of meds and it converted into nsr. I have been feeling bleh ever since. Lots of strange beats and tired and lightheaded I am not on meds except aspirin

mav7 profile image
mav7 in reply to Iamfuzzyduck

Seems unusual to be converted to NSR in the ER and not prescribed meds. Did you see the EP or another doctor after the ER visit ?

Consider being patient at this time, insure your afib is controlled, and wait on the consults with Wolf and Natale to make your choice. Both have educational vids on YouTube which may be helpful. Be discerning in reviewing the vids. In the interim, may want to consult with your primary care doctor concerning your symptoms.

Would also be good to have the results of a recent echocardiogram and EKG prior to your consult with Natale and Wolf.

Iamfuzzyduck profile image
Iamfuzzyduck in reply to mav7

I was prescribed metoprolol and aspirin in ER but both the cardiologist and EP cleared me to come off the beta blocker because I have a slow resting pulse and normal blood pressure. The echo was normal , ekg shows pacs. I think what you are saying is good advice-thank you!

Singwell profile image
Singwell in reply to Iamfuzzyduck

Reading the thread, I think you'd be wise to wait and get more information. Don't rush into a procedure till you know more about what your heart's up to. Get a consult with a good EP who can help you find out more.

Iamfuzzyduck profile image
Iamfuzzyduck in reply to Singwell

Thank you, I think maybe I shall wait!

bean_counter27 profile image
bean_counter27 in reply to Iamfuzzyduck

I had a low resting HR and normal BP before being diagnosed with PAF but was still put on Metoprolol (in conjunction with Flecainide). Metoprolol is used for rate control - to help stop your HR from going too high during AF episode. The high heart rate compounds the impact of your heart misfiring (out of sync) and can result in shortness of breath, light-headedness etc during episodes - and over the longer term, damage your heart.

So I doubt the reason you're not on Metoprolol is because everything is OK when not in AF. It's needed for when in AF so I suspect it's either Metoprolol causes a problem for you when not in AF (HR or BP too low and symptomatic) or your episodes aren't long enough to warrant rate control. It's probably the latter given your description "mini events" implies episodes are very short??

Iamfuzzyduck profile image
Iamfuzzyduck in reply to bean_counter27

I have beta blockers for pip. My episode was 40 hours of 150 -180 bpm but have not had a full blown afib attack since November. I have sinus brachycardia when in NSR. So if I have afib again i will take the beta blockers. In the interim i have ectopic beats. I am at the beginning of the afib journey! I must take aspirin…

bean_counter27 profile image
bean_counter27 in reply to Iamfuzzyduck

I have bradycardia too. Current HR = 47bpm. That's about what it was before I started taking Metoprolol but definitely not as fit as I was when I started taking 5 years ago.

PIP for AFib is usually an anti-arrhythmic medication like Flecainide. Metoprolol is for rate control - stopping HR from skyrocketing. Why rate control instead of rhythm control... or both?

Also why are you, an otherwise healthy 56 y.o. female, taking aspirin?

Iamfuzzyduck profile image
Iamfuzzyduck in reply to bean_counter27

The aspirin is under order from the doctors instead of anticoagulants. The pip is metoprolol or the other beta blocker bisperol (?) . The EP said he didn’t want me to have an anti arrhythmic because he would want me monitored in hospital for adverse side effects first. I think he was just hoping I would have the ablation this month…

bean_counter27 profile image
bean_counter27 in reply to Iamfuzzyduck

Bisoprolol.

Have you heard of CHA2DS2-VASc Score? Assessments like this are used to help determine AF stroke risk and recommendation for anticoagulation. You'll see it referred to regularly in comments on this site.

Refer

mdcalc.com/calc/801/cha2ds2...

The use of antiplatelets e.g. aspirin and anticoagulants have risks (major bleeding) as well as benefits (stroke prevention). So tools like CHA2DS2-VASc are used to determine whether the benefits are likely to exceed the risks. My CHA2DS2-VASc is zero i.e. low stroke risk despite having AF - so I don't take anticoagulants as the risk of doing so are assessed as being higher than my stroke risk.

Iamfuzzyduck profile image
Iamfuzzyduck in reply to bean_counter27

My score is 1 because I am a female! I am not happy because the gastroenterologist told me before i had afib that I should not take aspirin because of severe pitting but the cardiologists say it is a risk worth taking 🤷🏼‍♀️

Cookie24 profile image
Cookie24 in reply to mjames1

My third ablation was done by Dr. Santangeli, a protégé of Dr. Natale. He isolated my LAA.

mjames1 profile image
mjames1 in reply to Cookie24

Did you need a Watchman after the LAA isolation? The majority of patients do.

Jim

Cookie24 profile image
Cookie24 in reply to mjames1

Yes, Watchman has been recommended. I have been dealing with other health issues so I have not proceeded with Watchman. I take Eliquis. I don't mind taking Eliquis. EP said if I needed to stop Eliquis for an operation, stroke risk is higher due to LAA isolation. If I remember correctly, EP told me aspirin for six months after the Watchman procedure.

Iamfuzzyduck profile image
Iamfuzzyduck in reply to Cookie24

So do you think someone who works for the same group would be as good? I do have an appointment at the end of the month with Dr.Greet, who works for the TCA group, but I was going to cancel it as there is probably a limit to what my insurance company will pay and probably see Dr. Natale. Dr Greet also believes I shouldn't rush into the new procedure...

Mrsvemb profile image
Mrsvemb

If I lived where you do, I would go to Dr wolf for a mini maze with no hesitation.

Iamfuzzyduck profile image
Iamfuzzyduck in reply to Mrsvemb

Thank you, is there a reason why you would prefer the mini maze?

MiniMeGreen profile image
MiniMeGreen in reply to Mrsvemb

Exactly!

Iamfuzzyduck profile image
Iamfuzzyduck in reply to MiniMeGreen

Is there a specific reason why, would you mind sharing with me? Thank you!

Poochmom profile image
Poochmom in reply to Mrsvemb

Yup!

Mrsvemb profile image
Mrsvemb

Because catheter ablation very often has to be repeated and AF still breaks through. Also within 3-6 months post op with the mini maze, you can get off all the medication including the anticoagulants. With catheter ablation you still need anticoagulation and very often flecainide etc.

For me getting off the medication is key, because I can’t tolerate any of it.

Iamfuzzyduck profile image
Iamfuzzyduck in reply to Mrsvemb

that is a good reason! My current EP said i must take meds for three months after and then no meds. I am getting a second opinion obviously …

Poochmom profile image
Poochmom in reply to Mrsvemb

You stop anti coagulants three days before the mini maze and never take them again even if AFib were to return. With Eliquis now costing several hundred dollars a month I thank my lucky stars I had the mini maze a year ago.

Jonathan_C profile image
Jonathan_C

I would try get a procedure as soon as possible - the longer you delay the more "set" afib becomes. I assume the unknown doctor is registered / qualified / meets some minimum requirement and therefore will be good enough.

Ducky fuzz?

...Duzzy .. 😁

Iamfuzzyduck profile image
Iamfuzzyduck in reply to Jonathan_C

Lol! You nailed it!

Iamfuzzyduck profile image
Iamfuzzyduck in reply to Jonathan_C

The unknown dr is an assistant professor and works out of a major hospital, I just can't find much info on him outside of his bio

Jpot34 profile image
Jpot34

Dr. Wolf's mini-maze is a no-brainer! Was so close to having it done (2 weeks) but their Covid protocol scared me off. No pcr test for me when they are poisonous!

Ducky2003 profile image
Ducky2003 in reply to Jpot34

Just curious as to what is poisonous about a PCR test? In the UK, you just stick a swab in your throat and up your nose. 🤔

Jpot34 profile image
Jpot34 in reply to Ducky2003

From my extensive research, don't have another test. GL!

Ducky2003 profile image
Ducky2003 in reply to Jpot34

Doesn't answer the question so I'm still puzzled as to what is poisonous about a cotton swab. 🤔

Jpot34 profile image
Jpot34 in reply to Ducky2003

I'm not here to educate you. Only you can do that. If I found the truth, you certainly can.

Ducky2003 profile image
Ducky2003 in reply to Jpot34

I don't need educating. I asked a perfectly simple, polite and genuine question, as we all tend to do on this forum, the idea being that we try and help folk. Perhaps you should consider why you need to be rude instead of helpful. 🤷‍♀️

mjames1 profile image
mjames1 in reply to Jpot34

Could you please explain what you mean by "no pcr test for me when they are poisonous". A PRC simply involves swabbing your nose. No medications involved on your end.

Jim

Jpot34 profile image
Jpot34 in reply to mjames1

Now you all know why I didn't want to go into any detail. GL to all!

Lakehouse1 profile image
Lakehouse1

If you have an appointment scheduled with Dr. Wolf in February, I recommend you not miss it. It takes months now, just for the initial visit for him to decide if he can help you. People from all over the U.S. are trying to get appointments with him.

Did you send all of your records to his nurse? I live in Texas also and had the Wolf Mini Maze in October of 22, then one year later I was one of the 5-7% that needed a “ touch up ablation” . Dr. Fahed, who is an EP and works very closely with Dr. Wolf, did it at Methodist Hospital, which is where the WMM is done. He is very good! I am so blessed to have been able to have my procedures with these two amazing doctors. I’m off of all medication now and in sinus rhythm.

It absolutely matters who you have do the procedure, I had a failed ablation in 2018, and luckily Dr. Wolf was able to clean up lesions and other issues from that one. My ablation with Dr. Fahed was so easy compared to the first one that was done by another doctor.,

I wish I would have gone to Dr. Wolf from the very start of my a-fib, and not had the first ablation in 2018.

Dr. Wolf is booking about 9-12 months out for the surgery, but since you are so close I think you’d have a chance of being moved up if there’s a cancellation or postponement. He is a wonderful and very caring doctor, I hope you will at least talk to him.

Good luck to you!

Iamfuzzyduck profile image
Iamfuzzyduck in reply to Lakehouse1

Thank you for your helpful response. I think after reading everyone's reply I will keep his appointment. I did an initial query on his website and he deemed me a suitable candidate for an appointment at least...

Poochmom profile image
Poochmom in reply to Iamfuzzyduck

You will Not be sorry if you go with Dr Wolf. It is so worth the wait. I promise!!!!!! And being in Texas you have a very good chance of having it moved up if you get on the cancellation list

Lakehouse1 profile image
Lakehouse1 in reply to Iamfuzzyduck

You should join The Wolf Mini Maze Facebook group. There is a lot of helpful information, with many of his patients sharing their experiences. It’s very informative.

Camelia23 profile image
Camelia23 in reply to Lakehouse1

You guys are so lucky in US having access to this mini maze treatment. Good luck to you.

EW518 profile image
EW518

If you are reside in Houston, are you aware of Dr Percy Morales. Dr Morales is also on the web with a program to help all of us take control of and possibly reverse AFib. He seems to be very well versed and comes with excellent health grade ratings. I have personally followed him since 2020 and find his advice to be both honest and upfront. He does say on his web site that he performs procedures for patients in the Houston area.

Iamfuzzyduck profile image
Iamfuzzyduck in reply to EW518

Thank you for the information!

kdra profile image
kdra

Definitely wait for the top Doc

opal11uk profile image
opal11uk

As far as I am concerned I would want the best doctor and would be willing to wait.

MummyLuv profile image
MummyLuv

I’m around your age, i’m 52 now. I had a young inexperienced doctor (he was a stand in for my experienced EP who had covid) do my catheter ablation, he hit my phrenic nerve, it took months to recover. I would definitely wait for the experienced EP. After that experience I went on to have a mini maze, I was long term persistent so diff to you where a catheter ablation has a higher success rate, but I honestly wish I’d gone straight for the mini maze, I didn’t know about it until I started searching for options after my botched catheter ablation. Mini maze availability is rare and you are local to one of the most experienced surgeons in the world. I recommend you don’t cancel, go and see Dr Wolf and then decide between your options. Good luck!

Iamfuzzyduck profile image
Iamfuzzyduck in reply to MummyLuv

Oh that sounds nasty, I am glad you are now recovered. Thank you for the information, I am now going to keep my appointment with Dr.Wolf...

vent profile image
vent

wait. You only have one heart.

Golfer60UK profile image
Golfer60UK

Good morning from England on a frosty and cold morning.

I have had two ablations which failed, and then a pacemaker with AV node ablated. Feel so much better but AF still there but 'controlled' by the pacemaker.

Golf is now fine with no ill effects so 3 x per week weather allowing.

Have to take Apixaban for blood thinning but no other recognised AF medication

If I had my choice again, Dr Wolf without hesitation as it provides a better result

Best of luck

Dave

Iamfuzzyduck profile image
Iamfuzzyduck in reply to Golfer60UK

I am glad you are able to play golf! Sorry you still have Afib...

Golfer60UK profile image
Golfer60UK in reply to Iamfuzzyduck

Well apart from a bad leg, ingrown toe nail, headache from too much wine last night, can't find my underware, apart from that I'm ok

😀😀😀😀😀

Dave

Quilafizz profile image
Quilafizz

Hi there,

I am also 56 in good health, live in the USA and have excellent insurance. I was diagnosed with PAF with RVR at 49 and underwent a 4-vessel PVI cryo ablation with watchman device implantation after I rapidly decompensated and failed antiarrythmic drugs. Insurance would not cover any ablation unless I did not respond to the various medications and /or became unstable. The wolf (or any) mini-maze and Dr. Natale’s procedure are very invasive ( mini-maze) and complex. They are not for first time AF treatments and are only covered after you have failed previous ablations, usually multiple previous ablations.

Just so you understand the mini-maze, it is an open heart surgery. Your heart is stopped, you are put on a bypass machine, your chest is cut open, and you awaken with chest tubes inserted into your lung and a large IV ( central line or ECMO line) in your neck. You will also require cardiac rehabilitation and will have a minimum 3 day ICU stay. Hearing these physicians ( of which I am one) refer to this as ‘a minimally invasive procedure’ makes me laugh, as there is NOTHING minimally invasive about any open heart surgery. Recovery can be quite lengthy.

The fact that your cardiologist took you off of metropolol because you were otherwise stable doesn’t lean towards getting your insurance to cover an ablation. In the U.S., the average cost for catheter ablation is around $150,000. Mini-maze $250-500K, depending on location. Our insurance companies don’t like to pay that kind of money. They won’t cover this as first line treatment, even if your surgeon recommends it. They would rather pay $5.00/month for shit Beta-blockers that make you feel awful and won’t stop your AF from progressing.

Your EP sounds like a newbie. He won’t answer your question as to how many ablations he has performed ( bad sign) and hasn’t even given you a clear cut diagnosis (worse sign). I wouldn’t let anyone touch your heart who cannot do these two very basic things. You can’t ablate if you don’t know what arrhythmia you have.

You really really really need to do some research and find an EP that does high volume ablations in a high volume ablation center. You will get a clear cut diagnosis and be able to formulate a plan of attack. My EP does 12-15/week. His partners do more. These centers are staffed with the best cardiac anesthesiologists and cardiac nurses and are experts at performing these procedures. They are ready for anything that happens and are always associated with an on-call or in-house cardiothoracic surgeon should things go badly. Put in the wrong hands, a ‘simple’ ablation could wreck you. Your arrythmias could get much worse, you could suffer a stroke and in the rare case of an atrial esophageal fistula ( rare, but they happen), you will have a massive stroke and most likely die (mortality > 80%).

This is not the UK, it’s the USA. We are decades behind the UK in ablation knowledge and performance. Every U.S. EP wants to be an ablation ‘expert’ now as there is a lot of money to be made, but few are. I can’t tell you of the many patients I have come across that have been wrecked because their EP’s experience was so limited.

I would try searching the big university hospitals near you. If you live in or near a big city, you can search for cardiac ablation specialists. For better results, look for large city communities that are home to high income active seniors. These patients demand the very best and have the money for excellent malpractice attorneys. My point… only the best EP’s survive in those settings. Those… are the docs you want operating on your heart.

Do your research and be very, very careful. You have choices. This is the only heart you will ever have.

Good luck, stay strong and demand answers!!!❤️

Goosebumps profile image
Goosebumps in reply to Quilafizz

Your second paragraph is factually incorrect and should be amended please.

The mini maze term is used to cover minimally invasive procedures which are not open heart but are accomplished using side entry points and cameras. Few surgeons can do them but if you look at Dr Wolf’s website you can actually see an operation being performed. The heart is not stopped and no lung machines are required.

It is true that a maze procedure can be carried out during open heart surgery, but that is not a mini maze.

MummyLuv profile image
MummyLuv in reply to Goosebumps

This is spot on, dr wolf uses a slit and two portholes from each side of the chest. Some surgeons like mine and Saul’s use 3 portholes. It is not open heart surgery, that is the traditional Cox Maze, expect Cox Maze IV which is also minimally invasive (just to confuse things )

Ducky2003 profile image
Ducky2003 in reply to Goosebumps

This is what puts the heebejeebees up folk when this kind of incorrect information is posted, and should be edited by the commenter before anyone else goes into a panic.

2018NSR profile image
2018NSR in reply to Quilafizz

You are incorrect. The mini maze is NOT an open chest procedure and you are not put on a heart lung machine. It is all done with scopes on the beating heart. The MAZE is an open heart procedure and usually only done to correct afib when the chest is opened to correct another heart issue. Also the mini maze is not just for when all other things have failed. 50% of Dr Wolfs patients are choosing the mini maze as their first line of defense against afib and medications and eliminating stroke risk.

Iamfuzzyduck profile image
Iamfuzzyduck in reply to Quilafizz

Hmm, the insurance thing...I am hoping now that the AHA guidelines have changed so that ablation is first line treatment for (young!!) people like me that they will pay, but who knows.... I did break the news to hubby, lol!! Thank you for your answer!

ochinee profile image
ochinee in reply to Quilafizz

". They are not for first time AF treatments and are only covered after you have failed previous ablations, usually multiple previous ablations. "

Ablation is being considered now as a first treatment option in the U.S.

jacc.org/doi/10.1016/j.jacc...

Medical insurance in the U.S. differs by company. Mine allows elective procedures without referrals.

Cookie24 profile image
Cookie24 in reply to Quilafizz

Where are you in the USA? I am on the East Coast and had an ablation at Penn Medicine in Philadelphia

Singwell profile image
Singwell

Hi, don't know the US medical scene but here in the UK I sought a private consult with one of the top 10 EPs once I'd been diagnosed. His advice was - don't have an ablation with anyone who does less than 50 a year, preferably 100. I grilled the guy I went to on the NHS and he had no problem answering that question, nor about if he'd ever had a patient die post procedure. I had excellent care and would request to go back to that department. Aftercare is also important- ask about that. Who can you contact in weeks post procedure if you need to etc.

Iamfuzzyduck profile image
Iamfuzzyduck in reply to Singwell

Thank you.....after care is something I hadn't really thought about but will now

Tapanac profile image
Tapanac

I personally would go with the mini maze. Go on mummyluv post she has had dr wolf well over a year ago (maybe more) and is doing amazingly well Better to go with someone you trust and has a good reputation

All the best

Goosebumps profile image
Goosebumps in reply to Tapanac

Mummyluv may not see your post so I hope she doesn’t mind if I reply on her behalf. She did not have the Mini maze with Dr Wolf. She was treated by a surgeon here in the UK using a procedure similar to ,but not exactly the same as the Wolf minimaze.

Tapanac profile image
Tapanac in reply to Goosebumps

No of course I don't mind if you reply on her behalf.

I did see below that she had replied to the question and yes I forgot she had Mr Hunt didn't she? It was a mini maze though I believe?????

All the best

Pat x

sunlovah profile image
sunlovah in reply to Goosebumps

What exactly was done if not Mini maze please?

Goosebumps profile image
Goosebumps in reply to sunlovah

I am trying to be precise here, the Wolf minimaze uses a specially designed surgical tool designed by Dr Wolf to apply lesions around the pulmonary vein. There is actually no Maze involved, so the title is somewhat misleading. The procedure Mummyluv had involved a maze being drawn on the outside of the heart by a UK surgeon. Because it was done minimally, i.e with side entry, it’s also a minimaze.

So although both procedures are called Mini mazes in our community, they are subtly different but with similar excellent outcomes apparently.

The left atrial appendage(LAA) is occluded in both procedures. Meaning patients should be able to come off anticoagulants if the cardiologist sees fit.

ozziebob profile image
ozziebob in reply to Goosebumps

Yes, Dr Wolf said, in one of his videos in reply to a patient question, that he doesn't like the term "minimaze" to describe his procedure, but it stuck after being adopted by his patients, so he hasn't kicked up a fuss over it. His preferred description of his procedure (a medically more accurate description), is actually mentioned in that video, but I have no access to it now and I sadly didn't write it down.

bob

2018NSR profile image
2018NSR in reply to ozziebob

Dr Wolfs original name was PVI+LAAE “ Bilateral Pulmonary Vein Isolation with Left Atrial Appendage Occlusion “.

ochinee profile image
ochinee in reply to ozziebob

"His preferred description of his procedure (a medically more accurate description),"

"Bilateral Pulmonary Vein Isolation and Closure of the Left Atrial Appendage" 🙂

MummyLuv profile image
MummyLuv in reply to Goosebumps

Very well explained :) the procedures both do the same pulmonary vein isolation using a similar RF tool, they both clip the left appendage. Dr. Wolf targets ganglionic plexi so very effective for paroxysmal, not a maze as he doesn’t do a maze on back of the heart, my surgeon did which is more effective for persistent which is what I was.

Iamfuzzyduck profile image
Iamfuzzyduck in reply to Goosebumps

I am currently not on anticoagulants and my echo showed now bruising around the appendage, so do you think once I hit 60 I would have to go on them if I have an ablation, I suppose that is something to remember to ask the EP

Iamfuzzyduck profile image
Iamfuzzyduck in reply to Tapanac

Mummyluv looks like she is thriving now!!

MummyLuv profile image
MummyLuv in reply to Iamfuzzyduck

I am very fortunate fuzzyduck! I am sure you will be too, you’ll make the right choice for you. :)

Tapanac profile image
Tapanac in reply to Iamfuzzyduck

Yes I am so pleased to hear and see. You will be fine to if you go the same way as her. Xx

ozziebob profile image
ozziebob

The description of the mini-maze procedure by Quilafizz above bears no relation to the experiences described on this Forum by MummyLuv in UK, and saulger in Japan, nor to the mini-maze of Dr Wolf as shown in his many YouTube available videos.

I suggest you look at saulger 's past Posts where he has documented, with photos, his experience in Japan.

In fact, with apologies to saulger , I will give you a link to his Posts.

healthunlocked.com/user/sau....

And, as others have said, please do not cancel your Dr Wolf appointment.

Brandue profile image
Brandue

Go with Dr. Wolf. He has a great track record and is a expert in treating afib. I did not have a Wolf mini maze , but am going to in February. After 2 failed ablations I'm tired of them burning my heart muscle.

Iamfuzzyduck profile image
Iamfuzzyduck in reply to Brandue

I am sorry your ablations did not work. Good luck with the minimaze procedure, keep us updated!

lockerbie profile image
lockerbie

Good Morning.

I also definitely recommend the Wolf Mini Maze. After 4 failed ablation, 4 CardioVersions and trying many medications, I found information on Dr. Wolf. Fantastic Doctor. Fantastic staff and Houston Methodist is the best. Go see him. Caring and smart. I had the Wolf Mini Maze one year ago. NSR. What a great feeling. Go see him or speak with him. Don’t have an ablation first. The only negative is the wait now to get the procedure. Ask him what to do in meantime. Go on the Wolf Mini Maze site and read everything. Just to be able to get off of blood thinners is the best.

Best of luck .

Iamfuzzyduck profile image
Iamfuzzyduck in reply to lockerbie

thank you, I am glad it has worked for you, that is good news!

pauljusa profile image
pauljusa

I'd strongly recommend the Mayo Clinic in MN. I have a complex cardiac history starting with afib. Most of my problems were due to bad treatment choices by local EPs . Since I started using the Mayo, I've seen a big difference in treatment, diagnostic quality, and results.

Best wishes - Paul

Iamfuzzyduck profile image
Iamfuzzyduck in reply to pauljusa

Thank you for the information, I am glad you are able to have better treatment, I believe the Mayo Clinic has excellent reviews

Snowgirl65 profile image
Snowgirl65

Wow -- your situation is very similar to mine. I opted for the less experienced, but located closer to me and with sooner ablation appointment EP, who botched my first ablation. He touched on the phrenic nerve and said he attempted to get a vein "behind the heart," but had problems doing so. Fast forward a couple years later when a-fib became more frequent again, where I changed to a reputable EP at Cleveland Clinic who did a much better job, and said my first EP did not even attempt to ablate the hidden vein, as there was no scar tissue. In other words, my first EP lied through his teeth. To make a long story short, I wished I chose the experienced EP at a reputation hospital in the first place. I hope my story helps!

Iamfuzzyduck profile image
Iamfuzzyduck in reply to Snowgirl65

Goodness, that sounds awful, thank you for warning me, I hope your phrenic nerve is now ok?

Snowgirl65 profile image
Snowgirl65 in reply to Iamfuzzyduck

That first EP said that after he touched the phrenic nerve, my diaphragm stopped working for about a minute. It started back up and he continued on. I had to have a special test run the next day, and it revealed that all was fine. Thanks for asking!

Iamfuzzyduck profile image
Iamfuzzyduck in reply to Snowgirl65

Thank goodness it works!!

2018NSR profile image
2018NSR

I’m Sandi and when I post I have been asked to divulge that I am the admin of the Wolf mini maze site. Keep your scheduled interview with Dr Wolf and also speak with Dr Natale. If it’s an ablation you want, go with Dr Natale as he is the best in his field. He is also doing the new fara pulse ablation now. If clamping the left atrial appendage and eliminating anti coagulants and stroke risk is important consider the mini maze. The LAA is not addressed in a catheter ablation and they will offer a Watchman after the ablation. Catheter ablations very often need to be repeated. The mini maze is considered a “one and done” procedure however nothing is 100% and a handful each year need a touch up ablation in an area away from where the mini maze was done and all of these people have done well. You are fortunate to live in Houston as both Dr Wolf and the excellent EP he works with are both at Houston Methodist. I do believe Dr Natale is in Austin as well on rotation with other places he practices

I had three failed ablations and was then told my only other option was an AV node ablation and a pacemaker and then a watchman all of which I adamantly refused. I did have a Wolf mini maze going on 6 years ago and I remain afib free, take no medications including an anti coagulant and I am not pacemaker dependent. Just my story. Research your options fully and you will chose what is best for you! Best wishes.

Iamfuzzyduck profile image
Iamfuzzyduck in reply to 2018NSR

Thank you, that is very informative. so Dr.Natale is really doing the pulse ablation? By the time I can have the procedure, probably around June, he should be quite adept at that then... I think he mainly works in Austin (I live west side of Houston so it isn't too far to Austin)

I shall keep my Dr.Wolf appointment, I am just scared of having incisions! Seeing the video of someone's heart jumping around looks kind of scary!! I am glad the minimaze worked for you!

2018NSR profile image
2018NSR in reply to Iamfuzzyduck

I believe he started doing the fara pulse in December. That’s what was stated at the afib conference in August. The fara pulse is faster and safer as it uses cold and minimizes phrenic nerve and esophageal damage than RF catheter ablations. No incisions but your heart is penetrated as it is all performed inside the heart. It was stated at the conference that the fara pulse has basically the same results as an RF or Cryo catheter ablation tho safer

Mini maze has an incision about 2 1/2” under each arm and a few scope punctures on the skin but the heart is never penetrated as everything is done on the outside of the heart. All completed with scopes. So incisions on the skin yes. Dr Wolf in 20 years has never had a death or phrenic nerve injury. I’m glad you are researching both procedures. You will know which is best for you. Each Dr does a totally different procedure but they are both exceptional.

Iamfuzzyduck profile image
Iamfuzzyduck in reply to 2018NSR

Thank you! I shall definitely consider either option for now!

Peacefulneedshelp profile image
Peacefulneedshelp

I am listening to a couple of researchers in the world of health. You asked what would you do? I would look at diet very closely because I too fell into the trap of not eating correctly. Especially eating too little and exercising too much. So when our blood sugar goes too low by not getting enough fat in the diet or too little protein and not enough carbs, it throws the body systems off. I never realized that before. That we created our own stress hormones to be released. Cortisol and adrenelin being 2 of the 4. Experiment with your diet while you wait for the doctors and decided.

I started with adding more fruit and fruit juice and then added in sweet potatoes and white potatoes, Not a lot. My problem is I am not hungry in the mornings. I wait too long to eat something and I have already set off the stress hormones.

we are all different I am a big believer in trying things out. Once we set off those stress hormones it affects the liver, and the thyroid which then causes the heart issues and for us that is AF. Which also affects BP.

Just my thoughts.

Iamfuzzyduck profile image
Iamfuzzyduck in reply to Peacefulneedshelp

Thank you, I am actually wondering if cheese can set off my PACs, I had a boat load of coffee yesterday and nothing happened!! I have a good diet generally though I do wait to eat - I eat in an 8 hour window and do a big workout on an empty stomach so maybe having breakfast would help, I just can't stomach it at 8 am!

2018NSR profile image
2018NSR in reply to Iamfuzzyduck

Yes, especially aged cheeses.

Peacefulneedshelp profile image
Peacefulneedshelp in reply to Iamfuzzyduck

I am like you I just don't want to eat in the morning and I would exercise on an empty stomach which I am learning is the worst things we can do. Try to have some fruit juice and a small piece of fruit or even some dried fruit. I am finding it is making a huge difference for me. It has been months since I had an episode of AF.

Sweetmelody profile image
Sweetmelody

Go for the top doc always, one with the most experience, one with peer-reviewed publications, one with standing i.e., high respect, in her or his EP division. That’s what I have done. The trust I have in my EP, the confidence I have in him, is a big part of my healing process. Hormones from uncertainty and fear interfere with healing, not just psychologically but physically.

I’ve had several CV’s plus an ablation. Whenever I speak to a nurse, another cardiologist, or a med student fellow — any medical person attending a CV, — and tell them Dr. Akoum is my EP, their eyes light up and a big smile beams my way, often accompanied by “He’s the best” or “You’re in good hands.” That speaks volumes. They are the ones who know.

Dr. Akoum is the Director of Electrophysiology at the University of Washington Medical Center, the top medical center in my part of the U.S. He trained with EP faculty and researchers who are in the forefront of advances in Afib treatments. His practice and research focus on treating Afib; that’s his specialty, which is exactly what I’m looking for. He is especially interested in researching procedure outcomes, which is where gold standards in treatment choices come from. He’s done hundreds and hundreds of procedures. He is worth waiting for.

I was a textbook writer before I retired. My first textbook was good enough, earnest and showed expertise, but a bit amateurish. By the time I got to 5th revisions of a series of textbooks 25 years later, I was really good, at the top of my field. Experience matters. I learned so much along the way that only experience can teach. I’m sure the same is true in all fields, including and perhaps especially in invasive medical procedures.

Iamfuzzyduck profile image
Iamfuzzyduck in reply to Sweetmelody

Thank you, but sometimes I wonder if at a certain point the doctors could become blasé as they have done it so many times before. Just my thoughts, but I would rather and experienced that in experienced doctor....

Sweetmelody profile image
Sweetmelody in reply to Iamfuzzyduck

Let me put it this way: I did not become more blasé about my work as I got better at it after 32 years of doing it. I took pride in my skill. I loved what I was doing. I loved that I could do it so well. I remained passionate about my work

My EP is clearly passionate about his work. I know that about him. Get to know your EP and look for the same qualities. I had a previous cardiologist who spoke and acted robotic, going through the motions, saying the words he’s said hundreds of times to other patients he treated as production line mannequins. I ditched him immediately.

Choose wisely. Choose experience and passion.

execz1 profile image
execz1

Hello lamfuzzyduck

if I were you I would for sure wait and take the appointment with Dr Wolf and then take the appointment with Dr Natale. Afib and other arrhythmias are progressive and have no magic bullet fix and if you get the most experienced doctors to examine your case you will be receiving the best treatment from the beginning not have to go through all the trial and errors by those less equipped to treat you. You are most fortunate to be in Houston and the opportunity to see these doctors. I am sure all afibers including myself would not forgo such opportunity, it is worth the short wait for both doctors. Good Luck

Iamfuzzyduck profile image
Iamfuzzyduck in reply to execz1

I think you are right, I shall keep the appointments thank you!

Cumbremar5 profile image
Cumbremar5

Quality quality every time don't mess with your health !

Iamfuzzyduck profile image
Iamfuzzyduck

Thank you everyone for your kind and informative replies, it is very much appreciated. So I shall not continue with my current EP, and shall cancel the appointment with a different one in Houston (I had one booked as a back up) and shall continue with Dr Wolf and Dr. Natale as they are the best in their fields and I can wait for a procedure, I believe this is the most sensible way to go having read everyone's responses!

ozziebob profile image
ozziebob

After all the good advice you have received from others today in your Post, it seems to me that you will only obtain an "inner confidence" that you are making the right choice for yourself by undertaking your own personal research into the various procedures mentioned in the Replies. You will then be able to give your "informed consent" to your chosen treatment.

And you certainly have time before your appointments to absorb the extensive videos and information and testimonies available on Dr Wolf's website ...

wolfminimaze.com

... or via the library of live Dr Wolf videos on the Houston Methodist YouTube channel. Highly recommended.

And for a personal Wolf mini-maze journey, I suggest you absorb the Posts (& Replies) of @saulger who journeyed from Greece to Japan to undergo a similar procedure with the Dr Wolf trained Dr Ohtsuka ...

healthunlocked.com/user/sau...

Good luck.

Iamfuzzyduck profile image
Iamfuzzyduck in reply to ozziebob

Thank you Bob!

FroggyBear profile image
FroggyBear

hello…. Please do yourself a favor and choose the EP with the most experience that you can, even if you have to wait a little bit longer. There are possible complications that can result from a cardiac ablation and the more experienced your EP is, the better off you will be. Best of luck to you..

Iamfuzzyduck profile image
Iamfuzzyduck in reply to FroggyBear

Thank you…

Quilafizz profile image
Quilafizz

Nothing that I said is incorrect. The 'mini maze' surgeries are all open heart and most require bypass. If you actually watch Dr. Wolf's video , you can clearly see a 6 cm incision with direct opening of the chest wall to the heart, AKA, 'open heart surgery'. You can also clearly see the chest tube and central lines being placed in the right side of the chest. None of these things occur with catheter ablations. Cardiothoracic surgeons are also not required UNLESS THE APPROACH IS OPEN. EP's cannot perform mini mazes for this reason.

This is not a "slit", it is an incision. If, during the surgery, a more aggressive approach requiring Bypass is necessary, the heart will be stopped and placed on Bypass. Those of you who have undergone minimaze surgeries will remember signing the consent for this prior to being put under.

I am not trying to give anyone the "eebiegeebies'. For pete's sake...what a silly comment. I am simply replying to the author's request for information based on being a practicing physician, to someone who is my age with a very similar health background. We also both reside in the USA and our insurance requirements are quite different from the UK's. I don't want to see lamfuzzyduck spending thousands of dollars to fly all over the US getting consults from the Dr's Wolf and Natale's of the world just to be told the procedure won't be covered unless they fail antiarrythmics and all of the other loopholes the insurance companies make you jump through.

I have to say, I have really enjoyed this forum until now. I cannot believe some of the awful advice I have read on this thread (I do appreciate the excellent advice given and commend those that gave it). Telling the author that mini mazes are not 'open' and pretending that they are like a trip to the dentist is completely irresponsible.

Lastly, to the person who told me that I was 'incorrect' and to 'amend my paragraphs', I am happy to download pics of my scars, or 'little slit' from my 'non open heart surgery' from the Wolf mini maze, then you can correct me on the steps of the surgery that I had compared to the one that you did not.

Dr. Wolf saved my life. I will forever be grateful. I have a life because of this man. If I had to (God, I hope not), I would do it again tomorrow. But is IS open heart and it IS a long recovery. You don't need to sugar coat things with patients like us by misrepresenting the facts. We are a tougher bunch than that.

Iamfuzzyduck profile image
Iamfuzzyduck in reply to Quilafizz

Thank you for the valuable information -I shall keep an open mind but I am leaning more towards an ablation with Dr.Natale and if that is not successful then I shall still be on the books of Dr.Wolf. Luckily for me I live the West side of Houston so both Doctors are within driving distance. I am hoping insurance will cover the ablation as it is now, under the new guidelines, the first line of treatment for people like me. I am glad Dr.Wolf was able to help you…

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

Meds and the right ones should be your ultimate best.

I take CCB Calcium Channel Blocker for Day H/Rate. 120mg AM. Was 165 H/Rate Day on Bisoprolol.

Changed to Bisoprolol from Metoprolol ugh, pauses at night showed on 24-Monitor, breathless on any exertion, exhausted, HRate 186bpm.

2.5mg separated at PM Bisoprolol.

Best to lose weight if you are heavy.

Is Rhythm a worry? Flec is a risky anti-rhythmic drug. Rate is better to control like BP.

Ablations, Cardioversions and anti-arrhymic drugs are all risky, stroke, phrenic nerve damage, worse AF etc. Scarring to your heart means no going back. You can control rapid heart rate but can't with low....

Your decision as research, techmiques amd procedures are improved upon and if your ECHO shows some abnormally in your heart none of the above can be done or used.

Research yourself of monitors, tests etc.

cheri JOY. 75. (NZ)

Iamfuzzyduck profile image
Iamfuzzyduck

Thank you for the information!

You may also like...

So what would you do?

returned. My EP now says he wants to do a second RF ablation under a general anaesthetic using the...

What would you do?

on the 4-6 month waiting list for an ablation at the Heart Hospital in London. I called my...

What would you do?

have had similar episodes about twice a year for the last few years but did not have a Fitbit so...

What would you do?

i have occasional bouts of Afib, i guess a couple a year which is not too bad comparing my problem...

What would others do?

today as my AF has really progressed. Diagnosed 4 years ago I’ve had more AF attacks than hot...