Perforation RV-lead, causing pacing onto diafragma (see further comments below)

To Robin

by Chriskederat - 2018-11-25 06:27:14

Thanks for your reply.

Lead beating

by JoanneMT - 2018-11-25 08:46:05

Not sure whether this is comparable.  I got my pm the end of October.  During the night after implant, I had a tumbing feeling (like a heart beat) below the ribcage/ diaphragma.  The nurse told me to mention this at the Pm checkup the next morning.  At the pm check up they changed a number of parameters and the tumping stopped.  Some people have hiccups with this.  I have to mention that the the av lead is put at an odd place in the atrium the close to the chamber. 

I still have stings sometimes just below the ribcage.  But this is doable and is difficult to erase aparently.   

So for you I hope they can do something with the parameters of your PM.   If you have the idea the person doing the changes has little experience in doing so ask them to call the PM company.  That's what they did in my case.  Hope your troubles diminish quickly.  

At JoanneMT

by Chriskederat - 2018-11-25 12:18:22

It looks and sounds as the same problem. Tomorrow I will give them a call. Today I found out about another problem: the PM is to much to the left, and covers an area of the shoulder muscle. It is not totally under the skin on the chest. Every time I move my left arm, the PM is rising a good 2cm.

Edit: Bad News!

by Chriskederat - 2018-11-26 11:59:05

After I made the call, they advised me toVisit the hospital once more. After a PM read-out, the specialist told me that there could be something wrong with the leads. A Thorax-X-ray has been taken again....

When we were talking about what to see and what not on the picture, a doctor came in and gave me the bad news:

'During the implant, the screw of the bottom lead, has been placed to deeply into your heart. The tip of the screw has punctured your heart-saque and now some moisture is building up. We have to check first how stable you are right now. The PM will be shut off and you will go on the monitor right away into the Emergency-Heart-Help. The screw must be torn back or  maybe totally renewed. Because of the puncture, that is going to be a big risk for you, in case of a mass-bleeding. Therefore you will go to the Universitairy Hospital in Maastricht-Holland ( about 80km from here), Where they will have the know how and the equipment to perform such delicate operation. Maybe open chest surgery..'

These are the same doctors who had this information since the 18th of November, when I first reported the terrible pain. 

Yes, this story will be continued. :-(

That sucks

by Zanneblake - 2018-12-01 00:05:28

Hope you are doing okay. That’s a lot to deal with. Best of luck to you. 

Edit: Some more bad news

by Chriskederat - 2018-12-08 13:23:48

After they re-positioned the lead in Maastricht, pain did manifest itself again after a week. To the hospital (again) and....again the tip of the lead (screw) through the side of the right-hart chamber into the pericardium.

An explanation for this, I heard today from the cardiologist, is that I do have a very thin wall on the right side. Also the right chamber curls a bit on top of the left one.

I have to go to Maastricht again (....) and they are now considering what to do. One option is to attach the lead right onto the Bundel of His. A new and a bit experimental solution. I can't even find any medical report on the Internet or any publication. Is there somebody who is known with this procedure?

Complications

by svctdp1130121310 - 2018-12-09 14:01:04

Thoughts and prayers out to you.

My sister experienced something very similar to this, a hemisternectomy to repair the lead through her heart, it was pacing her diaphragm in an attempt to self diagnose itself, a lead revision and alot of uncertainty. She made it through. Lead revision went higher into thicker part of wall.

The story so far.....

by Chriskederat - 2019-09-10 06:24:02

It has been 10 months now, since they implanted the pacemaker. The last time I wrote, was another suspected perforation of the RV-lead. I was hospitalized (again) in the 1st week of december, and send to Maastricht Universitairy Hospital. This for another reposition of the RV-lead. The first one was because of a perforation through the RV. I do have a slight thin RV-side and the tip was screwed into the epicard (the space between the chamber and the outside of the hart).

An X-ray, a duplex-echo and a CT-scan proved that this was again the fact. The lead was placed in the apex of the right-chamber. But again, a perforation into the epicard. A lot of blood, residu and moist was visable, inside the epicard (8-9mm). They shared all the images with MUMC and i was send by ambulance to them. In the meanwhile, i was tested positive for some hospital-infection, thanks to an older lady who was also hospitalized in the same room as I. Safety-procautions for contamination were taken, so I was moved like I had some kind of Ebola on me...

When I arrived in the MUMC, they didn't know I was tested positive. So in first, they wanted to send me back to Venlo. After some discussion, they could arrange a room for just me. The plan was my operation should be at the end of the day. A cardiologist (who wasnt informed about the images shared!) sat down with me, in his 'outbreak-hazardsuit' and started to make a new diagnose.

He thought the pain was due the earlier repostion and perforation and that it all was just a sterile infection of the epicard. To perform surgery on that, was asking for more problems. He also performed a PM-test and the resultr were normal. No dis- or malfunction of any lead. That was for him the evidence that he was right. He subscribed, onto the already immense amount of medicine and painkillers, another load of Ascal (6x 1000mg a day), morfine (Fentanyl 50mcg p/h and Oxycodon 10mg 6 per day). It was important, so he said, to go on a weekly basis to the PM-technicians to do a read-out of the PM. Why? To control if there was a change and they could act immediately in such a case... And the day after, I was send back by ambulance and discharged from hospital. End of story? unfortunatly not...

I was in agonising pain and my eyes were almost fluorescend because of all the medication. Almost every week I had to call the doctor, because I was in such a bad shape. After monitoring, I was send into the hospital again and again. The standard reaction however, was : if the MUMC thinks there is nothing to be done, why should we?

Afetr the 4th week of pain, I began to do my own research. I contacted several leading cardiologists in the country. The most prominent one told me that a ''normal-readout'' of a PM, doesn't have to mean that there is no perforation (...) I contacted MUMC again and asked them if they could do there own research, because of ths ew development and they approved. After a new echo, which took about an hour, they concluded there was indeed again a perforation of the RV-lead in the apex of the right-chamber, into the epicardial fat.. There now was a 10-12mm room, filled with bloood and moist. The next week they performed surgery. Because of the thin RV-side, the plan was to place the RV-lead directly on the septum. The wall between right and left, the lead will pace directly onto the His-Bundel. They extracted the old RV-lead and placed another one,with a sharp angel on the tip, to reach the septum. The next day I could go home. End of story? No.....

In the following week, I fainted at home, during a visit to the toilet. I contacted the doctor and again I was picked up by ambulance and droven to the hospital. They performed the standard tests (Thorax X-ray and bloodtest) and the doctor said there was nothing to be seen and nothing wrong. I saw myself, that there were periods of no heartbeat on the monitor. Not a malfunction or something, nut real periods of 0 paces for 5-6 seconds. I told him, but he said that was just the equipment.... I asked him for a readout of the equipment and there were several periods to be seen, where there was no heartbeat. The same evening I was send home.

I myself went to the PM-technicians and asked for a readout of the PM, the next day. I still had periods of low awareness and dizzyness. Within a minute it was clear: the new lead that was placed on the septum was pacing, but was dislocated. It was wandering free inside my rightchamber. Within an hour I was again hospitalized and MUMC was contacted. After 3 days I was send by ambulance to MUMC and they performed a new surgery. They replaced the RV-lead on the septum again. The same day I was send home. By train, because there was no ambulance available (...).

The last surgery took place on the 20th of january this year (2019). In a period of 2 months, they performed surgery 4 times into my heart. This in a period that my condition was at his worst, because of all the pain and surgeries. On the 22 of january I was hospitalized agan for 4 days, because of a bleeding afterwards in the operated area.

They call me the ''Bad-luck-guy'' inside hospital Viecuri in Venlo. That is an understatement...

All above, is the secondairy result of an operation on my left Carotis. That was clothed and as result I had a minor stroke/brain-attack. Primarely, a lot of receptors that are connected to the Nervus Vaga, which is situated in the same area of the Carotis Interna, are de-regulated. There are baro-receptors (which control the bloodpressure), stretch-recptors (which control the breathing) and chemo-receptors (which control a lot of things, but especially stomach-acid). The malfunction of the baro-recptors, are causing my declining bloodpressure and heartrhythm. This in such an extreme way, that my heart will stop beating, if in any way my bloodpressure is influenced by whatever reason. My PM is pacing in 22% of all the time, also during the day. If I turn my head to the right, my bloodpressure is going down. Unfortunatly, this is still progressive, because of the woundtissue that is developing inside my neck and throat.

In the meantime I also developed malfunctions in my breathing. The recptors are intervening my normal ortho-sympathic nervesystem. Because of that, I sometimes just stop breathing without me noticing that. A short period of hyperventilation-like gasping is what follows. On the monitor, my stauration is declining below the 90% and sometimes below 80%. 

For all this, I am being examined in UMC Utrecht. One of the leading hospitals in heart-lung-diseases. A new scan of my heart, noticed that my LVEF is under 50%, due to all the surgery's. In 2 weeks they are going to perform a PET-CT of my lungs, a volume-test, a new slepp-test and a new measuring of my arterial bloodgasses. The PET-CT is because of some nodules seen in the right side of my lung on the SPECT-CT.

Neurological, I am waiting on a MRI of my head onto the stomach. This to see f there is an area in my neck, which is causing the malfunction of the receptors. Because of the nes RV-lead in my PM, hospital Venlo will not take responsebilaty for such a MRI. The certification of my Biotronik-PM and leads is not longer valid (...) and in there eyes therefore not compatible for an MRI. Despite the assurance of MUMC that the new lead is indeed MRI-compatible (...) This will take some time, phonecalls and some minor persuation from my side, to get a MRI somewhere in the country.

The soap contnues.....