A pacemaker for SVT? I'm ready to risky my life if I can get one

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Hello all! I have had SVT all my life, but it was not treated until 2014 (I'm 22). In March 2014 I had my first heart ablation, and it didn't work. Then I had another heart ablation in May 2014, but this time the surgeon pumped up my heart sac and burned my SA Nodes inside AND outside of my heart. I was supposed to get a pacemaker durging surgery, but when I came out I didn't have one. The surgeon stated that my heart valve is not shaped correctly, so any further heart surgeries, even ablations, it'll be open heart. I now last week went to my surgeon again stating my heart is fast again and skipping/stopping, but he stated he couldn't treat me. I can't take medications due to asthma, and I weigh 110 lbs so diltiazem etc. made me pass out. I feel a pacemaker is my best option becauase my heart is too fast and it's wearing me out. Has anyone had a pacemaker for SVT? Or open heart surgery while getting a pacemaker? I'm way depressed that a doctor wont treat me when I'm not well, and I've decided to risk my life for a pacemaker WITH open heart surgery, knowing there is a possibility of dying while under. Any advise or  support would be amazing. I'm married and talk to my husband and even see a counselor for this, but I still feel alone and lost. Please help?   

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  • Posted

    My hearts with you ,I understand what you are going through,I. Also had SVT all my life ,I've never had an ablation, I just suffer through it till it stops,I've noticed there's always a lot of support on this site but I've noticed with your cry for help there was little or none , probably because we all face the same fear  your stoy set me back I my chair ,Damn doctors can't live with them,can't live with out them,why can't figure out how to fix this ,maybe because there's not enough of us,please keep us posted on your results with the open heart surgery and the pacemaker ,at lleast you and your doctor is willing to dose the dice  ,can a pasemaker even work ,one step for man kind one step for us with SVT thank you for your courage
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    • Posted

      Yeah I'm a little upset people haven't really responded or given me input, especially when I feel alone and thought this would be a great way to help me emotionally. Actually my doctor wouldn't do an open heart surgery and refuses to do a pacemaker. So I'm on the hunt on finding another doctor to see if they'd be willing to do it for me. I know the surgery is super risky, that's why my first cardiologist said no more surgeries. But I'm willing to risk my life to get releaf of my heart. I'm just so tiny, 5' 1" and 110 lbs so when my heart is fast, my body just feels sick, I get shaky and I feel the pulse in my chest, neck, and head. I just wish I had a pacemaker so I no longer feel this way.
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  • Posted

    Hi Kaela, sorry to hear of your story of events because of your long suffering with svt. A year or so on since your second ablation when your sa nodes were targeted has there been any change in occurrence or intensity of the svt episodes. Can the cardiologist not suggest medication to at least reduce your svt occurrences. I know they are very tiring if they go on a long time. I remember after my ablation didn't work I enquires about a pacemaker but the surgeon at that time didn't consider it as an option. I now take medication that more or less keeps it under control  as I don't want another ablation. Good luck with things Kaela 
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    • Posted

      My heart after the second ablation went down to the 70's, but now it's back up in the 140's. He has suggested medications, but they make me pass out and affect my asthma so I don't and can't take medications. I've been on 5 different ones to slow my heart and there is nothing that makes it better. That's why I'm at my last resort with finding a doctor who will do open heart surgery and give me a pacemaker. It's just too exhausting anymore sad
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  • Posted

    Kaela I don't think a pacemaker can help us,if it can I would be surprised,dose any one know someone that has SVT and a pacemaker,maybe it s posible to contact the manufactures of dose pacemakers ,to see what they have to say and I hate to bring it up  if the manufacture s insurance would cover and indemnaphy the doctors In case of vitality good luck finding a Doctor try the manufacture they might suggest a doctor
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    • Posted

      I've done tons of research for over a year now and there are patients with SVT who do get pacemakers. That is a really good idea though to contact manufactures for the pacemakers and docs! Thanks for the advise!
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  • Posted

    Hi Kaela

    Sorry to hear that you're having a tough time with this.

    I've had SVT for 14 years and I can totally empathise with the way this makes you feel physically and emotionally. I had an ablation neatly 6 months ago and for now it's fixed it.

    I work in the NHS and I'm disappointed with the way in which your case has been handled by your cardiologist. The ablate and pace procedure would of seen you have an echocardiogram and a series of preparatory tests, surely the detailed mapping of your heart would of helped the consultant prior to your last ablation.

    My advice, which I know you're doing, is find a better cardiologist. If your staying NHS check out NHS Choices for local other options for you. You can be referred to any hospital by the way, not just your local one.

    If you can locate a good private hospital, Ramsay Health etc, a private out patient appointment will cost normally less than £150 and they might be able to then refer you back to the NHS under the care of another consultant.

    There is a cardiologist near you I'm sure that will give you the reassurance and treatment you need.

    All the best

    Chris

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    • Posted

      Wow, thank you SO much Chris for your advise. I've never gotten an echo done, just tons of EKG's. I never realized that I haven't had an echo yet, probably because no doctor has mentioned it to me. I've had an ultrasound once and my blood wasn't being pushed out all the way of my heart in the left ventricle/atrium, so blood flow would go back in my heart before the next contraction. The doctors never told me that, but I worked at a hospital at the time so I was able to see exactly what was said. You have given me some hope that maybe there is another doctor that will be able to help me. Hopefully. You're very kind and very wise, and I really appreciate you for what you've said. Once again, thank you SO much Chris.
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    • Posted

      Oh I guess and Echo is an ultrasound of the heart. I had only 1 of those, and that was at a different hospital. My current cardiologist (now trying to find a different one) I don't think seen those results even though I had my medical records sent over to him. So still like you said he didn't do a very good job at looking at my heart before my second surgery
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    • Posted

      Hi Kaela

      Sorry it sent before I finished writing it!

      I was trying to say I've never been called wise before! but it's my pleasure to be able to help.

      Echo, ultrasound, all broadly the same. If they knew your ejection fracture was wrong (the blood going back bit) this would of been a part of your treatment plan.

      Anyway, moving forward, get a good cardiologist, new echo, deep breath and get it nailed.

      I lot of cardiac drugs don't like asthmatics. Adenosine etc but I'm sure there are some that don't contraindicate with your case. I get asthma but have had adenosine more than once in the past. But I'm not a pharmacist!

      Good luck and let us know how you get on.

      Chris

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  • Posted

    Kaela - you sound so anxious and I just wanted you to know that you are not alone, everyone who suffers with these things and who reads your post will be sending you "good energies"......keep your chin up, you are young and if your cardiologist thought you were in any danger, he would operate. I think we all get very anxious about this at times, but we need to remember that when things are serious, we get medical help pretty darn quickly, and your cardiologist sending you home would surely be a good sign. I'd read it as that anyway. Lizzie

    Lizzie

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  • Posted

    Thanks to everyone for your advise and input! It's helped me a ton and not feel so alone. Hopefully soon I see a new cardiologist and can get some clear answers
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  • Posted

    Try taking magnesium 1000 mg 2x a day, selenium 200mg 2x a day and potassium 500 mg 2x a day
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