Hi, I'm 19 years old now. I originally had a pace maker implanted in 1990 when I was one year old for vasal vagal syncope. I didn't use it all the time. It only sent electricity to the heart when I would experience pain. That way, rather than pass out or have a seizure as I did before the implantation, I would just hold my breath. When I was 7 my brother punched me in the back and I passed out. We found out the wire had broken, but my cardiologist wouldn't operate. I saw other cardiologists and they, like the first cardiologist said that there was a liklihood I would outgrow my vasal vagal syncope. I ended up going to Galvaston to see the doctor who first discovered vasal vagal. His surgeon replaced the pacemaker immediately and discovered that the old pacer had been corroding inside of me.
Lately I've been getting abdominal pains. I get them when I eat a full meal. I feel it especially when I'm laying on my stomach in bed on my computer - with my torso stretched. I almost always have gas and the pain goes away. I've gotten pains on and off for a while, but now it's been everyday. The reason I'm worried is because the pains are EXACTLY where the scar is - right under it and over the pacer, and especially because I had so many complications with the last pacer.
My cardiologist at home (I'm away at school now), told me five years ago that she never needed to see me again because my pacer was dead and I had outgrown my syncope. (Actually, I just have different symptoms. I was lightheaded every day, and none of the cardiologists' advice helped. I eventually figured out how to control it on my own.) When I got to school last year I saw a cardiologist up here, and he said the same thing - I never need to see him again, that I'm fine. While I was at home this winter break I went to see the pediatrician about my abdominal pains, and he had no idea what he was doing, and ordered an abdominal ultrasound. According to the ultrasound tech, an abdominal ultrasound measures and checks very specific organs, they dont look at the entire abdomen. Obviously we got nowhere with this. When I came back to school I called the cardiologist and he and his assistant spoke, and decided that this is not related to the pacer and I should see Student Health. Student Health is useless. They can't even handle giving me vaccines because they don't understand my vasal vagal syncope.
Also, at the end of last year (the school year) I was having heat flashes everyday, which I know can be symptomatic of vasal vagal syncope. When I went hope it stopped though. A couple days ago I was riding the subway and felt sick though. I feel sick sometimes when I'm on the trolley, as do others, but never on the subway. I took off my coat and hoodie and drank water, but still felt like I was on the verge of passing out. Until then I had shrugged off all my pains and weird symptoms. I gave up on doctors and decided that I was fine. Then I freaked out.
I know this is really long, and maybe it's not related to my pacer. I'm going to see a general practitioner off campus and also try to get an appointment with the cardiologist. I'm also going to try to get an X-ray because I haven't had one for years. I'm obviously really frustrated, and now afraid of what is wrong with me. I'd like to have some ideas or direction going into see the doctors, because I feel like they don't care at all, and it's not like I have a parent to advocate for me now that I'm an adult at school.
You should keep pushing towards the cardiologist. I am not saying that is what is wrong, but they shouldn't refuse to see you and tell them that you would like for them to have a chest xray and see if anything with the wires will show. after all wasn't there that same issue before and you were suppose to out grow this yet you didn't. have you seen an ENT he is the one that rules this out with my son. the V.V.syncopy. I wold just keep going, if you can, to whom ever will listen.
good luck and I hope you can get some answers soon
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