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jujemendoza2002 Find out more about jujemendoza2002
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    hi everyone, i had when back to cleveland clinic and seen a electrophisolgist and found out that I need an ablation for the atrail fib I have been having and that my symptoms are pretty severe, this is gonna happen in about 4-6 weeks they said, doctors in my home town had put me back on pacerone after being taken off of it from hyerthyriodism and keep me on it along with sotolol, cleveland doctors thought that wasn't a good idea and took me back off of it, when I'm in AF i am totally unable to move, walk or talk or anything, I have been having very strong chest pain and pressure on my chest and sob, and my color turns so white I get almost blue sometimes, recently i notices cramps in my legs when I walk in a episode and there has been a few times I lost eye sight where everything just seemed to fade out for a minute or two. While I was there I found out I had a low battery in my aicd and got a phone call about 3 days later telling I needed to be in a hospital setting and get a replacement asap, being I was unprotected from vt. So yesterday I got back to cleveland and got an new aicd, I feel horriable, the soreness sucks, this was my first replacement, and the experiance both times has been hard to deal with, in a way I remember things so vividly and it felt like i was dying, does anyone else have vivid memorys or thoughts on this procedure? and whats it like to have an ablation? I might have to move to Dallas, Texas area is there any good doctors down that way?, right now I don't have much choice on where I can live at.
    Jen

  • #2
    Re: updates

    Jen, I cannot comment on any of that as I have not experienced it.
    But I do wish you all the best when you do have your procedure.
    Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
    So if you are capable of thought then you are capable of great things
    Good luck and stay well.
    Glen

    Comment


    • #3
      Re: updates

      Jen

      I hope you feel better soon and remember to keep that arm down ok, but as far as a place in Dallas you may have to call Lisa on that one, but you have a good day or should i say an uneventful day until you are feeling better

      Shirley
      Diagnosed 2003
      Myectomy 2-23-2004
      Husband: Ken
      Son: John diagnosed 2004
      Daughter: Janet (free of HCM)

      Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

      Comment


      • #4
        Re: updates

        The word ablation means “A carrying or taking away; removal”. For the cardiac patient with atrial fibrillation a radiofrequency ablation can be performed using a heart catheter and a type of energy similar to microwave heat to destroy the small areas of heart tissue suspected in disturbing correct electrical pathways. Sounds like what they are talking about for you. It is supposedly painless - you'll be on your feet again in no time.

        This is different than the procedure used on HOCM patients known as alcohol ablation which has been described as a non-surgical myectomy. An alcohol ablation would target a much larger area of heart tissue, primarily the septum. It is a more complex procedure than the radiofrequency ablation and is rather risky. Recovery from this procedure would likely take longer.

        I have not had either procedure but am in persistent (permanent) AFib. I beginning to believe – maybe unfairly – that if we could just get rid of the AFib I would be healthy again.

        I'm curious about your experience with Sotolol as this has been discussed as a possible drug for me.
        • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
        • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
        • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
        • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
        • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
        • 2011: Brigham & Women’s - Medtronic ICD implant

        Comment


        • #5
          Re: updates

          I really haven't been on sotolol for a long time, like less than a year, and my afib has been so bad at times. I guess it has worked ok, but then again I kinda forgot what ok should feel like. sorry but i really can't say how good of a drug it is one way or the other. It might be a good drug for you, I would get others opinion's or maybe ask lisa?
          Jen

          Comment


          • #6
            Re: updates

            Julie,

            I had a radiofrequency ablation for atrial flutter two summers ago when I first found out I had HCM. I had a long EP study done before hand and then the ablation. I was in a partially awake state for the EP study, so I remember that, and then they put me fully under for the ablation. It was all very easy except that they put me in bed and hooked up to monitors at about 10:30 or 11 am. Then they did not get done with the previous person for several extra hours. I asked and went to the bathroom at about 12:00 and was getting ready to ask again when they came to take me in. They said it would only be about an hour, so I figured I would not hold them up by asking again. Well, I was not allowed to move, even to sit on a bedpan until 2:15 am! I recall the moment of joy very well! I watched every minute creep by on the clock before that time. They stuck a thing that is rather like a dustpan under me, but my body refused to cooperate. The pain of that was one of the worst I have ever felt. Since I usually store fluids until I lie down, when they finally let me up, I filled the measuring pan and ran over the top. Then I filled it again. The nurse could not believe it. So, I advise you to ask for a catheter or at least find out how long they will make you lie absolutely still. Other than that it is a piece of cake!

            I hope it goes well for you!

            Rhoda

            Comment


            • #7
              Re: updates

              Dear Rhoda,
              So far I’ve had six angioplasties (of which four were heart caths – the last one running six hours over two days) plus at least a dozen angiograms (same procedure except no balloon or stent.) I have learned from painful experience that the last thing you do before getting on the gurney is to go to the john, and get rid of every drop you can. The transporter always has some extra time to allow for this. (Didn’t you lay around outside the cath lab until they were ready for you?)

              I do have to admit that one time they must have bothered my bladder, because they opened the flood gates. As it turned out they had everything that was needed to clean up both me and the table. They just had some extra laundry that day. Frankly, if I had to choose between the embarrassment of peeing on the table, or suffering the pains of not doing so – well, let’s just say that the laundry company would probably appreciate the additional billing.
              Burt

              Comment


              • #8
                Re: updates

                I was not familiar with the drug pacerone, so I looked it up. I see that it’s actually generic amiodarone. It does seem odd that the Docs wanted you on 2 different antiarrhythmics, but then again, what do I know?

                Didn’t mean to put you on the spot . . . I was inquiring about Sotalol because I’m facing upcoming treatment that features the drug. I was looking for some first hand feedback. There are all kinds of places to get information about the drug and I’ve already done that. These sources tell you what the drug is supposed to do and usually will list potential side effects. Its going to be a rare Dr. that samples every drug he prescribes. Even those experts will be repeating that same information.

                These forums are unique in that here we can get actual user experiences rather than standard text book answers. It sounds to me like the drug is failing to work in your case. That’s useful information to me. If you also experienced some of the negative side effects, while having the drug not work, I think I would begin to form an opinion about the drug.

                Laura, the all important question for you: Did the radiofrequency ablation get rid of the atrial flutter??
                • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
                • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
                • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
                • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
                • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
                • 2011: Brigham & Women’s - Medtronic ICD implant

                Comment


                • #9
                  Re: updates

                  Actually, I am Rhoda. But, yes, I think it helped. Did it completely get rid of the flutter? Who knows? I had so many strange feelings before the ablation and fewer, and still many afterwards. But, ablation + beta blockers + calcium channel blockers + pacing seem to have helped sgnificantly.

                  Comment


                  • #10
                    Re: updates

                    Originally posted by Laoshur
                    Actually, I am Rhoda.
                    Oopps . . . I knew that. I think I looked at your screen name though and deciphered Laura - Sorry.

                    I guess I realize that there are no guarantees being made for any procedure or medication, but I also like to add up the "it was worth it" vs the "it wasn't worth it comments"
                    • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
                    • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
                    • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
                    • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
                    • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
                    • 2011: Brigham & Women’s - Medtronic ICD implant

                    Comment


                    • #11
                      Re: updates

                      Hi.

                      Okay, I had one of those electrical/ radiofrequency ablations done about 2 years ago.The EP doctors cauterize (burn) parts of the heart to help with stop epidodes of SVT and arrhythmias.

                      This is only my opinion.....

                      I would never let them do this to me now. I could be wrong, but I think it has further damaged my heart. My symptoms got worse after they did the ablation.

                      Here is how I feel and like I said, I could be wrong -- but -- for a normal heart, it may be okay to do. But for a heart with myocardial disarray, it think it is not good. I think it may create more scare tissue making the heart even more stiff. I could be off the mark on this, but honestly, I feel worse ever since they did it to me.

                      Plus, it did not work for me. I still have SVT.. I have episodes of A-fib.

                      This is just how I feel, please do not subsitute my judgement for your own.

                      My best to all

                      Eileen
                      49 yrs. old
                      Diagnosed at 31.
                      Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                      First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                      Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                      Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                      My brother passed away suddenly at 34 yrs old from HCM.
                      2 teenage children, ages 17 and 15.

                      Comment


                      • #12
                        Re: updates

                        Jen/Eileen,

                        Jen, I hesitated bringing this up, since it seems like you're facing so much already, and have a lot of uncertainty. But Eileen, since you opened the door, here goes.

                        My mom had an ablation for afib and tach. It was a horrible experience for her. She had a very bad time with it. It didn't help her much, if at all. And I know that if she could have gone back, she would never have done it.

                        This was probably about 10 years ago. My aunt just brought it up yesterday, saying that when my mom ended up at University Hospital in Denver, she would never forget the horrified looks on the faces of the doctors there when they found out she had had that done.

                        Now, of course everyone responds differently to procedures, being that everyone is in a different state of health when they get them done. But Jen, I would certainly do a little more research before getting it done.


                        Debbie

                        Comment


                        • #13
                          Re: updates

                          Quote by Debbie:
                          My aunt just brought it up yesterday, saying that when my mom ended up at University Hospital in Denver, she would never forget the horrified looks on the faces of the doctors there when they found out she had had that done.

                          I believe it.

                          I would never let anyone burn any parts of my heart again.
                          Back then, I did not know all that I know now about HCM.

                          Since I do not have health insurance, the EP doctors would only implant an ICD devise IF I agreed to let them do an electical ablation first. I was brought to the hospital under an emergency situation. They said they were going to try to "FIX" my heart problem by doing the ablation first, then if I still needed the ICD, they would give it to me. Afterwards, the EP doctors and cardiologists said that the ablation was unsuccessful and that I needed the ICD.

                          Please be careful out there everyone. Do a lot of research before letting any doctor, especially a doctor who is not an HCM specialist do any procedure.

                          Best Regards,
                          Eileen
                          49 yrs. old
                          Diagnosed at 31.
                          Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                          First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                          Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                          Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                          My brother passed away suddenly at 34 yrs old from HCM.
                          2 teenage children, ages 17 and 15.

                          Comment


                          • #14
                            Re: updates

                            Agreed!

                            Debbie

                            Comment


                            • #15
                              Re: updates

                              Don't mean to complicate the decision weighing Julie, but UK Prime Minister Tony Blair just had the procedure a couple of months ago.

                              I think a world leader would be guided by advisors and experts that we common folk don't have access to.

                              Probably, once again, comes down to who is doing the operation.
                              • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
                              • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
                              • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
                              • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
                              • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
                              • 2011: Brigham & Women’s - Medtronic ICD implant

                              Comment

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