Diagnosed with SVT and want to talk with others

I guess this is in reply to @sotiredofit, but probably a few others as well. You know one of the benefits of a discussion group like this is hearing how others have dealt with issues like yours, what kinds of treatments others are using for similar ailments, where to go for the best docs or clinic, etc. But sometimes its just in having someone to converse with or maybe just to listen to you. I may suffer from a bunch of stuff but many in this group really amaze me at how much they, like you, have on their shoulders and for how long they've had to deal with all of it. I really can't add anything to help you specifically with your issues, so I'm just a cheerleader here today. My message is simply this: don't ever lose hope, keep digging for answers, and keep talking to everyone who will listen. You will find someone with the right answers - either the right doc or clinic or maybe even the right stranger on a discussion group like this. Even tho it's been 20 years of suffering for you, don't give up, don't give in and don't ever stop learning. Good Luck.

How do the doctors decide which type of ablation procedures to treat the patient with etc?

Just noticed your post and can make a suggestion. I was born with a 1 in a million heart birth defect. Because of the defect, I’ve experienced Pulseless Ventricular Tachycardia, Bradycardia, A-fib, spontaneous blackouts, going into spontaneous unconsciousness and 3 heart attacks. These were all triggered by the defect, which is part of a condition called, Wollf, Parkinson, White Syndrome. I experienced these symptoms my entire life since I’m 10yo and I’m 78 now.

The whole situation is caused by a short circuit in the electrical system between the SA Node and the AV Node in the right Atrial Chamber. Because of rogue heart cells in the short circuit, when a pulse beat is trapped in the loop of cells, I go into Tachycardia and have been timed at 197bpm. So my heart has a regular pathway too, then my right ventricle gets commands to contract from two places and my heart’s off to the races.

My advice to you is to schedule an appointment with the nearest Electrophysiologist Cardiologist. They specialize in the electrical pathways of the heart and may find your problem, mine did. Now my heart is monitored 24/7 by a special loop heart recorder that will pick up any abnormal problems and report it to my doctor. Hope this helps,
Becky1024

Agreed as I find that some don't realize how many specialists their are for the Heart.
Even within EP field there are those who handle AFIB, and others like the one I had that handle VT. So it's always a great idea to ask what they specialize in.

Very true, all my problems revolved around my birth defect. My regular cardiologist had no clue what was triggering my heart attacks. I told the chief surgeon of cardiology that I had a heart attack just walking down the hallway of my apartment building. Yet I could go shovel 15” of snow away from around my car without a problem. He was dumbfounded, he thought I was making it up. I guess they don’t teach cardiologist about the electrical problems the heart can have because he never suggested I should see an Electrophysiologist. I had to do research on the heart to find out and then my pcp and
I worked out a presentation just to get an appointment with one, they’re so hard to get.

Hi , I'll try and answer your question and so sorry I didn't notice earlier. I've had about 8 Ablations and typically the EP Cardiologist will prior to the actual ablation do what is called mapping. This typically is done first with the decision to move into an ablation during the same procedure. They will explain that and usually get your permission to do both prior to moving into the Cat Lab.
During the mapping period they with a type of xray and these patches they put on your skin both front and back will initiate an arrhythmia to watch the paths and determine how many and the location of paths causing the arrhythmia. Once they have that information will decide usually based on where they are a method to seal off the bad pathways. These pathways are kind of like electric lines that grow and connect the good pathways to the wrong parts of the heart muscle and cause incorrect beating of the heart. So depending again on the location will use either heat or freezing to basically cut off the pathways they want to eliminate. So I hope that answers your questions? Please ask any other questions you have.
I also was reading recently that Mayo clinic has been working on a third method which sounded very promising for those who have difficult locations to reach here is the link
https://newsnetwork.mayoclinic.org/discussion/first-in-human-trial-shows-promise-for-hard-to-treat-ventricular-tachycardia-heart-rhythms/
@becky1024 you might be interested in this article also with your heart issue
Blessings

Hello, to all. I am feeling for all of us on this board today, as we struggle with cardiac conditions, treatments, and medications. It can be an emotional road. I myself have paroxysmal a-fib and problematic PVCs. I felt validated to see Dana mention that he has had 8 ablations. I have had 5 and had been told that that was probably the maximum, and I knew no one else who had had that many or more. But just last week my EP assured me that I am a candidate for another, perhaps with a newer technique using ethanol to create lesions in the vein of Marshall, which is coming to be understood as a critical location for the generation of arrhythmias. The malady is difficult, folks; I often use the word "perverse" - as if our errant heart beats enjoy creating problems for us! Silly, I know. Stay hopeful, keep up to date on technologies, and listen to your body - it can't lie, and will help you know your best next steps.

Hi Jen and I think you spot on with what your saying. I got a bit depressed with the never-ending arrhythmias and I too was always hopeful for some new science. So I see your comment
"But just last week my EP assured me that I am a candidate for another, perhaps with a newer technique using ethanol to create lesions in the vein of Marshall "
Is exactly what I also bring to this discussion as I put a link to another advance they are working on. Over the 10 years it was the hope of new advances that kept me going. What I didn't know at the time is never give up on options. Just when I thought there was nothing else that could be done. I was introduced to a new Heart with a transplant.
Granted it comes with a new set of rules and medications but it's another tool in the tool box. So don't ever give up now is my motto. And actually my life now is also great just different.
Please keep us updated as to the progress of your upcoming procedure .

Hi Jenny,

I had a radio frequency ablation 13 years ago for premature ventricular contractions (PVCs) in bigeminy pattern that worked gang busters (recovered well and was symptom free that entire time) until I got COVID for the first time in 2022 and they returned. I had a second RF ablation this February that was not successful at eliminating the PVC's, and seems to have provoked a new arrythmia (paroxismal supraventricular tachycardia). So, sometimes ablation can work, and sometimes not, but in my experience it was a minimally invasive option to try and I'm glad I did. I do have quite strong chest, left anterior neck and left shoulder pain during an SVT episode if it lasts more than 5-10 mins, but like you, can feel mild chest pain that comes and goes randomly that's unrelated to SVT and unexplainable. Not sure if it helps, but I do know my cholesterol is high so I am going to pressure my EP at my next visit to do a little more investigation into any potential coronoary artery blockages. If you were assigned female sex at birth, I would recommend advocating for yourself as much as possible as women's cardiac health issues frequently get ignored or misdiagnosed

I was reading your post and wondering if your PVC' had to be controlled by RF ablation and for whatever reason your GP didn't try medications first? What were your symptoms like with the PVCs? Also, do PVCs get caused by blockage or just electrical issues. I myself had a short journey on SVTs. Luckily medication stopped those, however I have Neck pain and pulsate tinnitus (carotid artery left side) which I feel is somehow involved with my Cardiac issues, though I'd be happy to be wrong.
~ Btw - Oh trust me, a skinny brown man's issues can get ignored as well. Even by his own people, so it's not sure women.