Pulsating neck

Depends a bit on how powerful the neck pulsations are

by crustyg - 2020-06-22 18:40:32

If you have A/V dyssynchrony, often the atrium will contract against a closed tricuspid valve and this will create a pressure wave backwards up the neck.  But, at least in theory, it shouldn't be every beat.

If, however, your tricuspid is failing, you may see a much more powerful pulsation up the neck with every beat as some of the pressure from the RV contraction goes backwards through the RA.

Depending on how worried you are about this, and how well/ill you feel I would start pestering to see a cardiologist again.

IIRC Pacemaker syndrome is the remodelling of the LV due to the non-physiological electrical stimulation in the apex of the RV.  Generally this manifests as reduced cardiac output (nausea, dizziness, shortness of breath, lack of ability to exercise, climb stairs etc.) and is commonly monitored by an echocardiogram measuring %LVEF.

HTH.

To crustyg

by _Claire_ - 2020-06-22 19:22:18

Hi thanks for your reply. Yes it's with ever beat when I have an "episode" which can go on for several hours or a couple of days. Then it seems to calm down (still way more forceful than anything I've experienced in my 35 years pre pacemaker) and still very visible to the eye but not absolutely pouding out my neck. Do you think the fact that sometimes it's worse than other times could still indicate the tricuspid valve failing? Or would that be a more constant pattern? Yes, I'm very worried to be honest. I have a phone appointment (due to COVID) with cardiologist in a few weeks but don't want to be fobbed off like I was by my GP. Should I ask for an echo?

Thanks :)

Pulsing

by AgentX86 - 2020-06-22 20:24:09

Dump your GP. At a minimum,  he should have passed you off to a cardiologist immediately and then gotten out of the way.

IMO, this isn't something for telemedicine. How are you going to demonstrate the problem over the Internet? If it were me, yes, I'd insist on an echocardiogram. It's simple enough procedure and, at least on this side of the big pond, is often done an the cardiologist's office. No need to go into a hospital. Even that isn't a problem here. I had an echo done on my carotids in a major hospital two weeks ago.

AgentX86

by _Claire_ - 2020-06-22 20:47:36

Thanks for you message. Everything is so hard here, GPs are the gatekeepers to all specialists and the wait for cardiology is often several months from their referral (pre COVID that was). It isn't usually possible to contact the cardiologist I'm already under, outside of the six monthly appointments. This contributes to my anxiety without a doubt. My 6 year old son was also refused a cardiology appointment even though I almost died last year, my brother died of suddent heart failure at age 30, only 3 months prior to my episode, my dad died at 43 sudden heart failure - all of us asymptomatic prior to those events :/ They have so far found one faulty gene from the arrhythmia tests - awaiting more cardiomyopathy ones. 

I will ask at my cardiology phone appointment for an echo and if he says no I'll go to A&E and refuse to move until they give me one :/ thanks for the support and advice :)

Gatekeeprs

by AgentX86 - 2020-06-22 21:05:00

GPs are often the gatekeepers here too (depends on one's insurance - I don't need a referral) but we aren't restricted to GPs.  While they aren't necessarily a gatekeeper here, it makes no sense to have one who's less than the best.  They are the first line of defense and do refer to specialists when they're needed. A really good GP can jump the line to get a patient into a really good specialist.  The best network together.

That said, I lost a really good GP to Obamacare and the one after was a real dork.  He doodled the whole time I was there and was overall incompetent. I still have to find one I'm happy with.

I wish you luck.  Keep kicking.  If you have to be such a RPITA that they'll get you in so they're rid of you, so be it.

I hope you've been seen by Clinical Genetics

by crustyg - 2020-06-23 10:01:10

Although the waiting time is long, we have a good Clinical Genetics team down here - and genetically mediated cardiac muscle problems are a big area.

With your family history I would have thought that you should be part of their patient group. If not, start reading NICE guidelines and write letters.  But you say that they've found one relevant gene problem so hopefully this is in hand.

Pulsating neck

by Savannah55 - 2020-06-23 16:49:23

Hi

I had this when my pacemaker was programmed to just pace the ventricle. I had terrible palpitations and could see the vein throbbing out my neck. I took a video once to show them!

I am also waiting to see the genetics consultant, it was supposed to be in April but was postponed until next year because of covid!! 

Replies

by _Claire_ - 2020-06-24 06:54:08

AgentX86 - haha thanks there. You're right about that for sure. I will keep trying :)

Crustyg - Yes, I have had one test for genetics but they only tested me for arrhythmia genes. They found one which is linked to Long QT syndrome but thankfully I don't have that. They are currently testing my brothers post-mortem samples for all genes. I don't know if they'll test me for all of them in the future, depending on what they find? They said in relation to the gene that the 'variance was of unknown significance'. 

Hi Savannah55 thanks for that input - well mine is a single chamber pacer and the funny thing is it's not actually pacing me as my heart is currently not having pauses. What you describe is how mine feels and looks. I have a few videos ready to show them too, however my appointment is by phone due to COVID :/

Thanks guys as always