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Atrial Fibrillation

Posted , 12 users are following.

Greebo64
Greebo64

Warning !!

To anyone with AF who is thinking of having ablation surgery

I have some very important info' for this group. I am an AF sufferer since 2008.in 2010 i had my first catheter ablation the new "Arctic front Ablation" [cryo/freezing method] it worked for around 18months but then the AF returned., i put up with it for a couple of years, but I was then recommended another ablation called Point to Point catheter ablation which is the usual or common ablation technique, which burns the problem areas. This was supposed to be "very Low risk minimal invasion Day surgery" with few complications & i was told nothing to worry about we can deal with the complications should any arise. So i went in for the surgery a few ago. During the ablation the prosedure the surgeon peirced a hole in the wall of my heart & he could not stop the bleeding, i was rushed to another theatre [unconcious] where another team had to open my chest, Put me on a bypass machine to enable them to repair the hole & stop the bleeding, i was in theartre a total of around 7 hours, i had to have a transfusion, i was then hept in a comma & put on a life suppoprt machine for 24 hours, following that i was in intensive care for a further 48 hours. several weeks on I am still recovering from this Nightmare.. Also whilst i was in hospital i spoke to another AF ablation patient who had suffered the same heart puncture during the ablation, but he was a bit luckier than me, they managed to stop his bleed without openenig his chest. I have had several different operations over the years & i have never had an issue with bleeding before

My advice to anyone with AF thinking of having an ablation,THINK VERY CAREFULLY, IT IS A DANGEROUS PROCEDURE!!  I almost lost my life

Graham

2 likes, 73 replies

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  • sammis2u
    sammis2u Greebo64

    Posted

    In response to the Eliquis law suit question. I experienced a nasty bleed within a month of being put on Xarelto. Lawyers are literally calling me daily.  I am told I do qualify since I required hospitalization and a procedure to stop the bleed in my colon. By the Cecum which is where the large and small bowel connects. There is a firm in Texas that is very persistent. I am the reluctant one because I am back on it, all the doctors insisted, 5 days later that I had to go back on it.
    • Greebo64
      Greebo64 sammis2u

      Posted

      Sorry to hear about your problem with Apixaban, it dangerous stuff

      i suppose the cardlogist would say you must consider the lesser of 2 evil

      i see my arythmia doctor on Wednesday, it will be he first time sinc the prostate bleed just before Xmas..i am sue he l try to convince me to go back onto Apixaban or simular, but i will refuse, i am sticking with my natural blood thinners for now.

    • robear28
      robear28 Greebo64

      Posted

      I stopped it Dec 31 and was told to use it as a PIP symptoms stopped about a week after stopping the drug and then when I took it as a PIP one time 5mg the cough tstarted back up which confirmed for me it's the drug causing it. I am taking aspirin now
    • sammis2u
      sammis2u Greebo64

      Posted

      I couldn't refuse in all honesty, even though I considered it. Because just this last year I was found to have had 2 minor strokes, and have some small vessell disease. My choice of another possible bleed or a stroke more severe made my decision. Living as a total burden on someone even more incapacitated as I am now is a worse nightmare for me.
    • jay7196
      jay7196 Greebo64

      Posted

      Greebo, will you tell me where you buy Plant Sterols and how much daily? I have AF  and Amiodarone, so I really want to try your natural way. Thankyou.
    • Greebo64
      Greebo64 jay7196

      Posted

      Jay Plant Sterols are for high Cholesterol Not for AF.

      i do have AF but take other natural meds for that ....see my previous posts a few weeks ago it states all in them

       

  • sammis2u
    sammis2u Greebo64

    Posted

    dure does not require separation of the breastbone nor use of a heart-lung machine.During a Mini-maze procedure, our heart surgeons go between the ribs and apply a special clamp around the junction of the pulmonary veins and the left atrium. A brief burst of measured radiofrequency energy passing between the jaws of the clamp creates the needed insulation line between the pulmonary veins and the atrium, thus blocking the abnormal electrical impulse pathway. Also during Mini-maze, through the same small incision, specialized electrical testing locates nerve tissue collections, which lie in the fat on the surface of the heart. These are interrupted as well, with no ill effects to the heart, adding further protection against AF.

    In all patients, the left atrial appendage, an unnecessary, small pouch on the atrium, is removed using a special stapler. This is the main site where blood clots can form within the heart.

    The Mini-maze operation takes around three hours and is safe and highly effective. Most patients stay in the hospital three days and can return to full activity two weeks after the procedure. Most can be gradually weaned off anti-arrhythmic and blood-thinning medications in three months.

     

    • Greebo64
      Greebo64 sammis2u

      Posted

      I asked my Arythmia Doctor about all this when saw him on Wednesday

      he said a Maze Procedure is usually done when doing other surgery on the heart...So i then asked him, why  the surgeon not do this

      procedure when he had to open my chest because of the Tamponade complication which happened during the catheter ablation , his reply was the surgeon was obviously too busy trying to save my life at that time.

      i cannot understand why this Maze prodedure is not done or offered more oftenquestion

      Actually the "safe" aspect i have to dout, i have just read that it has the

      same kind of risk as catheter ablation .

    • elizabeth_12
      elizabeth_12 Greebo64

      Posted

      You have given us all plenty to think about here. I knew that it was a tricky procedure having just read info on the web from drjohnm. He is a cardio electrophysist working with AF patients. I've been suffering for AF for 5/6 years and it's now permanent! I've had hell with beta blockers, rampril and recently withdrawal from atenolol. I've refused statins...cholesterol was slightly high. Read atenolol can heighten levels! Also refused digoxin? My GPs can't or unable to fully understand how lousy I've been over the past years! Anyhow,in desperation I went back online and found 13 things drjohnm says to his patients. Also it gives current thinking as a result of trials for a/f. He submits articles to Medscape,so is an eminent practitioner. The relief I've had from reading his info is immeasurable. He performs ablation,but has cut the number of ops. He makes sense and your posts have just confirmed how bad the outcome could be.

        I'm angry,because I don't think I've been treated well with my condition...routine meds...no follow up and no empathy. I may have found the solace that I need now! I'm angry for you. What hell you've had. It's shocking reading. I know all procedures carry a risk, but it's inexcusable to not give you the full info! I really feel for you and hope that you can make a good recovery. If I've to takes sides...I'm on yours! Not good enough out there. I hope you will take time to read the info I've been reading. I hope it may help. Take care.

    • linda51222
      linda51222 elizabeth_12

      Posted

      How right you are they put us all in the same little box and make no account for the fact we are all different, reading peoples comments on the forum makes me think of the song little boxes on the hillside and they all look just the same. the powers that be have no idea what we go through chuck the same meds at all of us, and hope we don't come back.

      I must say though the cardiologist I saw was very honest he went through the pro's and con's of ablation and pointed out the con's and he doesn't do it unless there is no other option.

      All I can say is its a good job we have each other.

    • elizabeth_12
      elizabeth_12 linda51222

      Posted

      You're lucky to have a good cardiologist. The one I saw was pleasant enough but didn't listen or explain anything. He just said to take digoxin as well as the betablocker and rampril. I asked him if it was ok to go to France. He said he wouldn't recommend it as all my details were here in uk! I then read on the internet that if you're taking digoxin that it has to be monitored. I think this was the real reason. Anyhow after reading the stuff about digoxin I decided I wasn't going to take it. Am I glad. Especially now that I've read the latest info on a/f. So now I'm taking just 2.5 mg rampril and rivaroxiban. Do I feel better....you bet I do! More energy,no falling as.eep during the day..I can walk,stand...still a few jelly legs, backache is not as bad,my hair isn't falling out and becoming thicker, no fuzzy heads,no swollen ankles, brain working better, sleeping better,not as many times to the loo esp through night,I'm wearing my vario vocals on my nose end! I can see long distance without them. Well there you have it, however,who knows what's going on inside!

      thank you for your post...makes so much sense. I hope that you can get sorted too.

    • sammis2u
      sammis2u Greebo64

      Posted

      Please understand, there are 2 different procedures currently available. One is the MAZE which is characteristically done during open heart surgery. That is NOT the one I am wanting and researching. The one i am interested in is the MINI MAZE. Which is not open heart, it can be done closed chest, with small entry points only and a better success rate than just ablations.  Right now there are trials being done as hybrid forms of the ablation and mini maze together which so far looks really promising. What I am learning is that once our AF becomes permanent the success rate, especially for ablation, drops significantly. Right now I am still considered paroxymal but barely. There is the Wold Mini and the Cox mini, I am kind of learning to the Cox. Google Mini Maze procedures, and you will see info on both and even more. So there is hope. Its being worked on for us, anyway to get off these meds.

       

    • Greebo64
      Greebo64 elizabeth_12

      Posted

      Hi Eliabeth

      Sorry to hear about all the issues your are having with the Meds you have tried, but i have to say i am not at all suprised.

      The story you have reads about my near fatal ablation is not the only problem i have had with the NHS, i have more than one health issue & unfortunatley i have had to have quite a bit of surgery for various things & the mistakes that have been made & nearly made are totaly unacceptable, in many cases a qick fix is their answer.

      if i had not questioned a proposed procedure by 2 different spinal surgeons for a cervical spine compression in 2012 i would now be Tetraplegic, it was the interenet that gave me the info to questiuon them, i eventually got a 3rd opinion from a top neuro surgeon who could not believe what the other 2 consultants procedures had been proposed [both of them different & totally wrong for my condition] i was told by thie top guy that i needed far more complexed surgery than they had proposed

      i finished up with a 4 hour op' [instead of the 2 previously proposed 45

      minute ops] & it was a complete success...

      I could tell more stories but i would be typing all day.

      The bottom line hear is...if you feel uncomfortable or doubtfull in any way ask for a 2nd or even 3rd opinion...& like on hear the internet has many sites where you can always find out the various information you may

      need to help make a decision & also question the consultants proposed treatments.

      Good Luck to you Elizabeth & to all 

    • Greebo64
      Greebo64 sammis2u

      Posted

      Yes i have been researching them , even the watchman procedure

      http://www.bostonscientific.com/en-US/products/laac-system/watchman-device/overview.html. This is not to stop the AF but to eliminate the risk of a stroke, which poses the most danger from AF.

      I have been informed that the Mini Maze & the Cox Maze is more difficult to do than if you had openheart & thus is higher risk, but as we all know they will only do "The Maze" in open heart if the patient needs other open heart surgery, in other words they wont open the chest just to do

      the Maze.

      I do hope the moderators will allow the link above in this post

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