Pace and Ablate? You won't believe what happened to me last Friday as I lay on the table in the EP Lab. I still can't believe it.

[RaySyl]

I have been waiting for my Pace and Ablate procedure since January of this year. It was postponed in June and then again in late July and I used to joke that I wouldn't believe that it was going to happen until I was actually walking through the door into the EP Lab.

Last Friday I did walk through the door and climbed onto the table where I waited nervously for the implantation to begin. I winced when the local anaesthetic was injected and began to enjoy the effect of the mild sedative.

I wasn't aware of the incision but did feel the EP pushing the first catheter into a vein, pushing it towards my Right Ventricle. Then the pushing stopped and I heard the EP and his colleagues talking about something. After a few minutes he came round to my side of the table and asked me to look at him - because of the sterile cloth over my head I could only do this by turning my head awkwardly to the right.

He informed me that they couldn't gain access to the Right Ventricle in the normal way because I had something called "Left sided SVC" - a congenital defect in the 'plumbing' on the left of my heart. Picture the scene. I was drowsy, in some discomfort from the surgery, which had been halted, and was receiving an anatomy lesson from the EP. He knew, from our conversations earlier that day, that I had an 'O' Level understanding of the anatomy and physiology of the heart and assumed that I would understand the nature of the anomaly which had been with me since birth, but which had never, until then, been spotted. I really did try to understand what he was describing but, since he couldn't show me a diagram, I nodded my head, as if I could visualise the quirk in my plumbing and understood what he was on about!.

He said that they could gain access to the SVC from my right side, but that would have to be done another day. He sewed up the incision, told me that I would eventually have a matching scar on my right side, sent for my bed, and wheeled me back to the ward.

When I saw him later we discussed when the repeat procedure might take place. He couldn't give me a date, of course, saying he would have to take may case to the Waiting List Team, who would make that decision.

As I write this I have nothing to show for my day in hospital apart from a very sore wound on my chest and an intense sense of disappointment that my return to some sort of heart normality was being postponed for weeks, possibly many months.

When I returned home that evening I Googled "Left Sided SVC" and finally understood what the EP had been trying to describe.

I hope the simplified diagram below clarifies the layout. The normal approach to the Right Ventricle is via the Left Brachiocephalic Vein into the Superior Vena Cava, the Right Atrium and then through the Tricuspid Valve into the RV. In my case blood reaches the RA through the Coronary Sinus and the Anterior Cardinal Vein - a vein which should have "regressed" or atrophied after birth into a ligament known as the "Ligament of Marshall". I am not sure if I even have a Brachiocephalic Vein, but if I do it is not big enough for a catheter to pass through.

HERE ENDETH THE ANATOMY LESSON.

Yer gotta larf, otherwise you go mad!

[GeorgeGlass]

everything seems to be difficult, keep laughing or we'll go insane

[poppystorey in reply to GeorgeGlass]

Came with nothing,we'll leave with nothing ,while we're here we have everything God Bless POPPYSTOREY

[RaySyl]

I should have written the "simplified diagram above".

[jondeanp]

I thought the simplified diagram was directions to the hospital car park 😂

[CDreamer in reply to jondeanp]

😂 I can quite see why….

[Singwell in reply to jondeanp]

I did too!

[Beverleyb in reply to jondeanp]

Me too 😂

[Ducky2003 in reply to jondeanp]

🤣🤣🤣

[meadfoot]

Wow you can dine out on that story but wish you hadnt to deal with this. Hope the soreness eases very soon and you quickly get your procedure successfully.

[Hidden]

How awful for you. Sorry you went through this. Hopefully you won't have to wait too long for your procedure.

[CDreamer]

Well now we’ve learned something!

Oh dear, I do hope that your wait is short and ‘ouch’ for the wound. Hopefully the next intentional wound will have a better outcome. Best wishes.

[Singwell]

Goodness, your u couldn't have dreamt that one up could you? There is a solution though and let's hope not too long to wait. You're very pragmatic about it. I'm impressed!

[Barb1]

My god, what an experience. I hope they push you to the top of the waiting list.

[RaySyl in reply to Barb1]

Hi Barb1, unfortunately the doctors don't seem to have much influence or control over the waiting lists. The EP will, I hope, be promoting my case but who knows whether he will have any success. This is the first time in my life that I wished I had private medical insurance!

[rosyG]

Sorry you’ve had such disappointment. I wonder if this anomaly would have shown on scan/ imaging and whether there’s a lesson for those carrying out these procedures. I’ll ask out medical director ( surreyasg) when I next talk to him as he does ablation

[RaySyl in reply to rosyG]

This was my immediate reaction. Why hasn't anybody noticed this before? I have had a few ECHOS and different sorts of scans over the years, so why didn't this anomaly show up? The simple answer appears to be that they weren't looking for it. LSSVC (just love the acronyms, don't you) appears too be one of those rare anatomical 'quirks' which appear when you are not looking for them. I would be interested to know what your Medical Director says.

[Offcut]

I was told that they wanted to do a Pace and Ablate on me. But they wanted a look see first. I was not sure about the removal of the AV Node which did delay the " Look see" however I eventually had an appointment at the hospital and they did all the tube insertions in the groin like an Ablation. They even Flat lined me to see what the sinus node would do! I was awake all of the time as I have an allergy to Iodine trace, It is very strange indeed to watch the monitor go flat! then they packed up but I then had a Femoral bleed that went to a femoral trickle and took 4 hours on a FEM Block to give me the chance of going home with The Wife given best practice on what to do if it starts to bleed again while waiting for an ambulance? After all of that it was decided not to do the Pace and Ablate but I have never been given a reason as to why not? I was later the following year diagnosed with IPAH!

I hope you get sorted soon.

Be Well

[RaySyl in reply to Offcut]

Do you mean ‘AV node’?

[Offcut in reply to RaySyl]

Now you have me thinking I will have dig out my letters. I am sure that it was my Sinus node? I do know that further examinations by RHC at Sheffield PH clinic that my left side of my heart is very good for someone my age (66) but the Right side is a real mess Hench I have who class 3 heart failure!

[Offcut in reply to RaySyl]

Just Found the Letter and you are right it was the AV NODE Not sure how or why I got that so wrong?

[RaySyl in reply to Offcut]

Providing the Pacemaker, with its three leads, is working properly we don’t actually need the AV Node. My understanding is that this is not true of the SA Node.

[Offcut in reply to RaySyl]

That was my worry what if the pace goes wrong? Probably why they flat lined me to see how it came back? That was a very strange thing to watch! Still do not know why they did not do the Pace and Ablate?

[RaySyl in reply to Offcut]

Do you mean Cardio Version when you refer to “flatlining you”? What is your AFib status at the moment? Do the meds work for you? Have you been through any ablation procedures? BTW, Really like your ‘name’. I am a woodworker and generate loads of “offcuts” in my work.

[Offcut in reply to RaySyl]

I have had 9 Cardio versions 3 Ablations and still in AF! No they stopped my heart to see if it would come back on its own. They did say not to worry they can get it back if it takes to long? I am now on 250mg Digoxin and 5mg Nebivolol plus Apixaban and 3x50mg Sildenafil for my IPAH Plus COPD, RLD and a few others to add to my list. I now take a total of 23 tablets a day!

Offcut goes well back in the early days of CB, G0DCZ from my Amateur Radio does not have the same ring. But I did have a DIY/ Locksmithing business that cut wood etc. including Asbestos. We made and fitted things for those less able too.

[RaySyl in reply to Offcut]

Crikey, Offcut, talk about co-morbidities. The Pulmonary blood pressure situation, which I have just Googled, is obviously a serious condition but it can be controlled, apparently. I am surprised that you weren’t told why you couldn’t have P and A. Is it because of the pulmonary condition. Stay strong and positive, although that must be difficult at times.

[Offcut in reply to RaySyl]

I have no idea as to why they did not do it? When I was first diagnosed with PH my local consultant told me I could have 6 to 9 years to live if not kept under control! Which worried me a bit to say the least. This was back in 2013 so not the case as you and I can witness! It is a Life limiting condition but the biggest issue is so many in the medical world know little to nothing about it. Hence PH has a small number of specialist PH centres around the UK. I go to Sheffield about a 180 mile round trip for me. They are brilliant. Still waiting for a MRI as they still do not understand why one side of the heart is okay and the other so bad?While in lockdown I did not have any AB but once I was allowed out but still masked and loads of antibac I got a chest infection? But managed to get Temporal Arteritis, diabetes and Orthopnea while staying in the house. Most medical staff including my GP call me Complicated!

Other than that I am fine.

Be Well

[RaySyl in reply to Offcut]

Just love the throwaway last line in this post! As for “complicated “ - that must be the understatement of the year, so far!

[Snowgirl65]

What a horrible thing to have to go through, with no positive result for it all! I congratulate your upbeat mood -- you're cheered on by all!

[RaySyl in reply to Snowgirl65]

Always look on the bright side of Life….. etc. I now have bragging rights about having a congenital defect, with no side effects as far as I know, which affects only 0.5% of the population. Cool, eh?

[Snowgirl65 in reply to RaySyl]

You're truly one in a milliion!

[poppystorey]

What a good example you are ,of how to get on with it.i have permanent AF heart failure,pancreatic cancer,my GP described me as a conundrum he mis diagnosed me for 4 years.from coughs,pain, symptoms galore,I'm being treated well now and in a sta ble condition ,all of you take care and I wish you well

Love Poppy Storey