Desparately Seeking Advice

I'm a 28 year old young woman. I have an extensive cardiac history. I was first diagnosed with sinus tachycardia, which actually turned out to be inappropriate sinus tachycardia. My resting heart rate was between 120-130bpm. I had my first sinus node ablation in 2014 which lasted 6 hours long. It also showed that I have a pfo and an anomaly where my vagus nerve is too close to my sinus node which put me at high risk for diaphragm paralysis everytime they got close to my sinus node. They were only able to ablate 60% and I was then referred to another specilast at University Hospitals in Cleveland Ohio. There they went over my case and found that mine was unique and rare. Only about 5 cases in all of western ny compared to mine and they didn't really come even close. They decided to do an extremely aggressive ablation which ended up lasting 8 hours and at one point the doctor told us that it was like playing whack-a-mole. They were only able to ablate 70% and explained the posibilty that the cells could lie dormant and come back. They did about 2 months later and I was then diagnosed with sick sinus syndrome/sinus node dysfunction. I was given an implantable cardiac monitor and underwent another ep study that showed a slow heart rate dropping to the low 30s ranging to a fast heart rate getting to 160-170. My heart was also beating out of sync. I was then implated with a dual chamber pacemaker. I was great for awhile but then ended up back in the er with with afib, ortheostatic hypotension, and intermittent runs of vtach. I was told to then have an av node ablation and become pacemaker depenendent instead of just pacing as needed. I had the av node ablation and all went well. Again I was good for 2 months landed back in the ER again. Ambulance ekg showed that i had to heart attacks and wolf parkinson white. ER however said everything was normal and sent me home. Following up with my device clinc they explained that in still have episodes of fast rate occuring about 12% of the time, that my atrial pacing is pacing 70% of the time and my ventricles are 100% paced. I then wound back in the ER unrelated to my cardiac issues. I threw up blood one morning, enough to have my dr send me in, which showed an elevated d-dimer at 30000. No clots and my cardiac enzymes were normal. However the monitor was showing 5 runs pvcs high which then went into vtach. They said everything was fine and sent me home. The hospital report however stated that now I have complete atrioventricular block. 

 

I am so confused as to whats going on or what it means. I still have symptoms, and a lot of them. Extreme palpitations, forceful beats, skipped beats, feeling like my hearts not beating in sync, chest pressure and fullness in my neck. My face, hands, and feet go numb, tingly, and blue, but they said everythings normal? I can still feel my heart pounding in my ears at night and race every time i roll over or change positions in bed. Something just doesnt feel right and if there is anyone out there with any ideas/advice I would greatly appreciate it! Thank you!

4 Comments

Well wishes

by NickMicra - 2017-04-25 20:41:01

I can't offer any advise as all of this so new to me sorry but I hope you get it all sorted and the answers you need as soon as possible!

Nick

Advice re. symptoms.

by Selwyn - 2017-04-25 23:12:02

It certainly is an extensive cardiac history over a period of time. You have clearly had a dreadful time of it and have had to grit your teeth and put up with things being beyond your control. 

Some of your symptoms involved the whole of your body, such as tingling in all 4 limbs, numbness, your chest  feeling pressure and fullness in the neck. Coupled with you having the night time pulse sounds etc. the most likely explanation is that you have an adaptive response to your terrible cardiac history, and that these symptoms are a result.

What to do? I think I would be wanting to discuss my feelings about what has happened to my body, my expectations and fears. Whom you choose to do this with is not that important, perhaps someone trained in both cardiological and counselling/relaxation skills, if your cardiology department has such a person. 

Without  such help, I expect you will carry a significant burden of symptoms around with you.

With best wishes,

Selwyn

Understand you frustration

by Jane S - 2017-04-30 11:02:22

Thank you for your comment to my post a few weeks ago, my consultant has picked up which wasn't apparent to the physiologist so getting another treadmill on Thursday. So to like you told me, keep at it, Not sure how things work over the pond, I got a second opinion with the guy I now see (nothing bad about the other consultant but just had the feeling he was getting fed up with me) but went private so had a longer appointment and got the chance to speak up also he went back through all my stuff 27 years worth. So it was a chance that if anything was missed it would be picked up and he was fresh ears to my symptoms. I work at the same hospital and have been spoilt at times over the years But I've pushed as you now when you're not right and each time there was something wrong.

Totally understand you're symptoms, I kept getting told it was the menopause !!!!!, funny when things improve there are no tears (of frustration)

You are young and as Selwyn say's you need to find someone to go over things with you, unfortunately these problems are difficult to diagnose but stick at it, do you take anyone with you when you see the consultant ? they can be your ears and back you up with how its affecting your life.

You will have complete block if your AV node has been ablated but the pacemaker will take care of that, have you had an echo ? they can learn a lot from them now adays, also a good session on a treadmill is very useful.Its amazing the difference a small change in settings can make. I would be supprised if you had WP as this is usually a congenital condition and Paramedics, whilst brilliant they are not cardiac physiologists and traces can be mis- interpretated.

keep on the forum, as there is always help and people understand

Take care

Jane x

 

Oh my god

by jjjxhhh - 2017-05-20 10:20:52

I literally want to hug you we are so similar 😭 I'm also 28 female with SSS and dual chamber pacemaker. Reading your post felt like I wrote it! My email  is jessicamariehunt@gmail.com if you want to connect. It would be amazing to have someone in my life who "gets" it. It's literally embarrassing how normal I look and how terrible I feel. Explaining any of this to friends and even family is just lost on them because since I don't look sick they don't comprehend how insane this all is. 

 

In any case, know you're not alone, and I would be so down to be supportive for eachother. Hope you're feeling okay today!

 

Jessica 

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