I'm now in permanent AF and have only been offered the pacemaker/av node ablation. Has anyone actually gone down that route?

[skary]

My age....65.... is now a problem according to consultant.... Trouble is I don't feel old ! Unfortunately I had to put my health on hold as my husband was terminally ill for 5 years ...I was diagnosed 7 years ago & now that I could have the full ablation but seem to have missed my chance.

[TheStand]

scary,

Many here in the states have an ablation at 70+. I have not had the procedure but have a friend who had it done. He now has a pacemaker and still has AF. I have typed this same thing quite a few times in the last few days. These are comments I typed earlier today.

I have read many articles on this procedure and also have a friend that had it done many years ago. Unfortunately many who have this procedure performed still have AF. In one article they stated that the "Pace and Ablate" method will not stop AF but will make it more tolerable and many will require an Ablation after the procedure to stop the AF.

This is a quote from the founder and CEO of stopafib.org.

"AV node ablation is typically the atrial fibrillation treatment of last resort and is used for that which is untreatable by any other means. It tends to be used in those elderly patients who are too fragile for catheter ablation. Most afib patients should exhaust all other treatments for atrial fibrillation before having an AV node ablation."

After speaking to many in the UK who are being told that the only choice is "Pace and Ablate" I began to question the reason. There was a discussion here and on other forums about it. Many of those being told that are younger, some in there 40's and 50's.

After researching this procedure I could not for the life of me figure out why I would tie myself to a pacemaker for the rest of my life knowing that I would probably still have afib and require an ablation anyway? Why wouldn't I try the ablation first? I commonly ask the question "why would I cut off my arm to get rid of a hangnail?"

Hope all of this helps... Don't just accept the consultants diagnosis, search, read, research and educate yourself on AF and it's treatments. Also I would suggest that if your consultant isn't an EP, I would ask to see one!

Tim

[skary in reply to TheStand]

Thank you for your responses; it always helps talking to people who also have the "beast" . I shall definitely seek to find out what other procedures/ medications are available here in UK; but it seems to be dependant on which hospital trust you find yourself in. Mine changed from Manchester to Liverpool .

I'm a reasonably intelligent person and don't give in easily ; after coming through a time with my husband that was grim in the last couple of years of his life - my AF went from bad to awful...but I'm still here determined to try and live and beat AF if I can.

[Beancounter Volunteer]

Hi skary

65 does not sound old at all for an ablation, and to go straight for an AV node ablation, which is irreversible, and leaves you dependent on a pacemaker sounds well a little hasty.

I would go back and question the consultant, there may be an underlying challenge which is pointing in this direction, but you do not appear to be aware of it, and it has to be a dialogue, not a dictatorial message from the consultant.

Best of luck

Ian

[meadfoot]

Hi Skarky.

Sorry to hear your story.

I agree with Beancounters comments and I would seek a second and indeed a third opinion. 65 is far from old and I know of many people older than you by far who have had ablation procedures. Obviously I am not a medic and don't know your health history either but my philosophy is ask, check out what I am being told and research, research, research, its your heart and your future.

On the positive side I am in contact with a lady in her late 70's in our hospital AF support group who has very recently (Feb 13) had the procedure you mention and is tons better. It was not the first route taken though by any means.

I would urge you to speak at length again to your consultant and check if he is an EP specialist or purely a cardiologist. Both equally good but often tend to have different treatment regimes. Only you and your doctor know the nuts and bolts of your particular condition so please do not be afraid to question.

Do you have a family member or friend who goes along with you to appointments who can ask questions also.

I reiterate 65 is not old, you have lots of life to live. Good luck.

Meadfoot x.

[nannygoat]

oh no you are not too old , please try for another opinion. It seems like only yesterdat we were being told we were too young for other things in life , age is just a number .

[skary]

yes it is ...age is just a number but sometimes it gets used as a reason for not doing ! nothing is easy but I reckon that if I show that I'm determined maybe it'll catch on. Time is too short to waste and I want to live as long as I can and as well as I can ...cheers all ,

[janlay]

I WAS OFFERED THIS PROCEDURE A FEW YESRS AGO AGE 60, I did not go ahead with it as my consultant told me that my heart would alwsys be in afib once its done, I really did not see the point of being in afib 24/7 and having a pacemaker to keep me alive, as it permenantly damages the heart

[skary]

Yes when you know that once it's done nothing can be done to alter it.. it's so unpleasant when your heart is always in AF....but to remove any chance of it returning to SR is a daunting one. I was on flechanide aspirin and bisoprolol but this was changed to Diltiem & warfarin ; but in 3 days my heart rate topped 150+..so am now back on bisoprolol and still trying the diltiem....time will tell how it all goes . Has anyone else been on the Diltiem ?

[TheStand in reply to skary]

scary, Your Dr has you on 2 types of rate control meds. bisoprolol is a beta blocker and Diltiem is a calcium channel blocker. Has your Dr talked to you about trying a rhythm control med? Rate control meds will not stop AF, only slow don the heartrate when it happens. Rhythm control attemps to hold the heart in rhythm which will stop AF from happening.

Tim

[skary]

Hmmmm...I was allergic to amiodorone in tablet form ...brilliant rash from head to foot...and have only been on bisoprolol ..flechanide as a pill in the pocket measure and diltiem. from last week...... so no is the easy answer. I used to swing in and out of sinus but now am in af all the time. My life has been stressful which doesn't help but I'm feeling that somewhere there must be a tablet to help.... will go see my doc and see what can be done.

Nikki

[TheStand in reply to skary]

There are quite a few different rhythm control drugs out there. It might have been a good thing that you were allergic to amiodarone. While it is probably the strongest and best of the rhythm control meds, it also has the worst side effects for long term use. I took propafenone for a few years and it worked well for me. Many others take tykosyn with good results but it usually requires a 3 day hospital stay to monitor you and get the dosage right.

The meds that you are on can help make AF less bothersome, but many times the amount you have to take to reduce the heart rate enough leaves you feeling completely worn out. When I was first diagnosed they tried a beta blocker and over time they increased the dosage to where my resting heart rate was in the mid 40's which was way too low. Even then, when I had an attack my heart rate would still hit 145 to 155 BPM. For me the rhythm control worked much better.

I will be praying that they will find the right med for you ,

Tim

[Lee-J in reply to skary]

Hi Nikki. I know this is a long shot as your posts were five years ago but can you bring me up to date with how you are now. Did you find a drug or did you finally opt for pace and a late. I seem to have the same history as you and am being told pace and ablate is now only option. Hope you are still checking the site and get this. Here’s hoping.

[skary]

Thank you Tim. It's great to be able to talk to someone who knows how tired you can feel when you are in the grips of this beast . I rarely tell people about it as they tend to dismiss it as not a " proper illness"; I truly hope they never find out just how real it is. Next time I see the specialist he will be faced with numerous questions .... as I feel now is the time to sort this out as until I can exercise more it will remain a catch22 situation. Having an underactive thyroid is not helpful and the thyroxin tablets just make heart worse... but in spite of it all....i'm still here !!!

Nikki

[albyone]

My EP put the av node ablation as one of two options. As he explained it by ablating the av node it cuts the electrical impulses to your heart and you have to rely on a pacemaker for the rest of your life that really disturbed me and on top of that you still will have afib you just won't feel it. After a cardioechogram he took that of the table and suggested a sinoatral node or an ablation or a medicine called tikosyn. Tomorrow I go into the hospital for 4 days to me monitored for the tikosyn. If the med works I will be back in normal sinus rythym if it doesn't convert me on the medicine while in the hospital the will do a cardioconversion and hopefully that will work for me. I will be 80 years old in Oct. and have been very active up until my aproxymal afib went full time last Oct. it has knocked me off my feet so I am hoping and praying this will work.

Alby

[skary]

I hope that one of the options work for you .... there isn't a day when I don't remember not being aware of my heartbeat ! I'm on these tablets Diltiem and have begun warfarin....so we'll see what is said next time I see the specialist. It may be a long appt. as I am armed with so many questions now...and I intend to get him to explain them all. Let me know how you go on with your new meds/.procedures.

Nikki

[BStanding56]

I have had Af for 4 years had cardioversions and two ablation, the last one was reasonably successful, however I now have sudden dips in my bloodpressure/heartrate and have collapsed three times in last 6 months, now they are considring a pace and ablate, they have said it will not stop the Af but possible the passing out which is very frightening. I had an ablation at 64 and 66 at Liverpool chest and heart hosp. while there for an appointment spoke to a 75 yr old lady who had recently had an ablation and was tons better.

[skary]

I'm sad to hear after 2 ablations that you are still experiencing problems. I too go to Liverpool

to see the cardiologist there...quite a trip for me from N. Wales. Have you heard of a Dr.. Gupta there...his name was mentioned by someone else with AF.... apparently he's the EP specialist. I truly hope that they find a way to stop you passing out; that must be awful. I get dizzy spells but not to that degree. Wish I could wave a wand over all of those who suffer from AF ...in fact all the nasty dis-eases. Shall remember you all when I talk to my god lol.

Nikki

[BStanding56]

Nicky, I also live in Colwyn Bay North wales, I have met Dr Gupta, and was impressed, because at the time he had a heavy case load I see Dr Snowdon and he has been brilliant.

Beth

[skary]

Hi Beth

The only person I've seen was Mr Waktare; and I feel I would like to see Dr Gupta. Not heard of Dr Snowdon ! When I see Dr Azzu at Bangor shall ask him to arrange appt. to see him .I'm

live on the Llyn peninsula ....Llanbedrog.... quite a distance away .

Nikki