PM movement and vein thrombosis

Hello everyone,

i would like to tell you my experience as I have taken great encouragement from reading here the accounts of others.

I had a subpectoral implant nearly three month's ago for Sick Sinus Syndrome. The actual procedure took an hour and a half under local and was not pleasant. 

Like others, I found the post-op pain much worse than I had been prepared for.  I perhaps should have suspected this because thankfully I was given a good supply of heafty opioid painkillers. 

I was extremely cautious, wearing a shoulder sling religiously day and night with only passive movements to protect against a frozen shoulder for two weeks.

I then started gradually using my arm as instructed despite still having significant pain. This suddenly got much worse so I emailed the clinic and was reassured and advised to continue to increase activities.

A week later I did a little light gardening. While having a shower afterwards I was shocked to see my left arm resembled a baby elephant's trunk: blue/grey and swollen. Realizing something was seriously amiss, my husband rushed me to A and E where a chest x-Ray revealed that my new pacemaker had rotated 90 degrees anti-clockwise in its pocket and a Doppler ultrasound confirmed that my Subclavian and associated left arm veins were all thrombosed. I was started on anticoagulants. 

The following month was truly horrible in terms of pain but also anxiety about what was going on.  I imagined a rogue pacemaker box flopping about in my chest wall, tugging on leads, perforating vessels, eroding ribs etc. (I am a retired medic which I think made things worse!)

As nobody else really seemed much concerned, I decided to look after myself, myself! I wangled a repeat CXR which confirmed  that the PM position had not changed again in a month.  This was immensely reassuring. Instead of trying to reduce medication, I allowed myself enough strong analgesia to keep the pain at bay and did only what felt comfortable. The clinic had said I could restart golf which was frankly laughable and only served to reinforce the disconnect that existed between their advice and my actual situation!  I made sure of a good night by taking a sleeping tablet regularly, supporting my left arm on a pillow, wrapping my neck/shoulders  in a heated wheat bag and listening to something  distracting using a sleeper speaker headband with timer. 
 

I had been a very fit and active 75 year old prior to the PM. This had been offered as a precaution rather than a necessity so I was pretty downhearted to end up a wreck and wished I had  never had it done. Or  that I had gone the subcutaneous route, which I was strongly advised against as I am quite skinny.

 

But I am pleased to say that as the three-month mark approaches things are so much better: I am off painkillers and able to drive, cook, potter in the garden, socialise. And each day is better than the last.
 

Considering my own experience and that of others,  I believe  that PM insertion, particularly under a muscle, is not necessarily a "minor procedure" and the post-op period is much more arduous for many than breezy information leaflets would suggest. Paracetamol would not have had the slightest effect on the severe pain I have felt and my heart goes out (not literally I hope!) to those who have had had to endure what frankly sometimes sounds like callousness.

So if you are struggling, I hope it helps to hear that, even with complications, things do improve with time but it is important to pace yourself and not feel pushed along an inappropriately fast path to recovery. 

6 Comments

Encouraging news despite your complication

by Gemita - 2023-07-02 13:04:48

What a truly encouraging story and I am so glad that finally your implant is settling in and you are beginning to get back to your normal life.  Are you off anticoagulants now?  I developed collateral circulation around my device after my implant in 2018 due to partial obstruction/trauma to my axilliary/subclavian vein.  I can recall how painful it was, although I was already on anticoagulation for Atrial Fibrillation at the time, so things could have been far worse.

I know only too well the complications that can arise from a procedure that is supposed to be so straightforward requiring only light sedation and a short hospital stay (probably discharged same day in most cases).  For the majority, it may well be like that but for some of us, we do experience pain following pacemaker and/or ICD implant far in excess of what our doctors tell us is normal.  And yes, paracetamol is far from effective when we experience nerve/vascular pain, for example.

Good advice about pacing ourselves, letting our bodies heal and getting used to pacing before we try to get back to our activities.  If we push too hard, too soon, we may experience a set back.  I hope you continue to do well and will not regret getting a pacemaker.  

On going medication etc

by Macfadg - 2023-07-02 16:33:42

Thank you so much for your interest.

I was told that subclavian vein thrombosis is very rare but I wonder if that is accurate given the increasing numbers of PMs being implanted. Perhaps someone in the club has up-to-date figures? 

 I will be on anticoagulants for minimum six months. Then a CT venogram to see if there are any pinch points along my veins that can be ballon-dilated.

I see superficial collaterals around my shoulder and  I think they must be doing a good job as my arm is much less discoloured. 

I remain optimistic and send kind regard to a fellow-clotter!

My collateral veins are doing a good job too just as Mother Nature intended

by Gemita - 2023-07-02 17:47:53

I do not have up to date figures to give you and from what I have read existing data on upper extremity deep vein thrombosis following pacemaker implants is mostly of poor quality and further research is needed. I agree though, given the increasing number of pacemakers being implanted, upper extremity deep vein thrombosis is not at all uncommon.  Please see first link below.  Both links should be copied into your main general browser to open.

I see from the first link that asymptomatic vein occlusion is present in a substantial proportion of patients and may complicate any future lead addition. Transvenous leads are clearly an important risk factor for symptomatic upper extremity deep vein thrombosis which may occur even up to several years after initial lead implantation.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8416492/

https://www.ncbi.nlm.nih.gov/books/NBK559269/

I hope your anticoagulants and collateral veins work their magic on you too and that you will not need any further treatment.  

If it helps

by PacedNRunning - 2023-07-09 03:23:07

I also developed a clot thrombosis in my subclavian vein. Noticed 5 mos post op. Mine is not under the muscle and I'm skinny. It's deep subcutaneous. My doctor preferred this since I'm so active. I play golf as well. I thought I caused it by playing volleyball but my doctor reassured me it's not the cause. It just happens.  I didn't have any surgical pain. Didn't need any meds. But that subclavian pain was horrible. Look up TOS. Thoracic outlet syndrome. I have this secondary to my pacemaker placement. Awful side effect. My PM was not precautionary. So I do view it differently. Comes with the turf and couldn't say no even if I wanted to. Well I could but I may not be alive today. I got mine at 46, just got my second one at 51. I just see it as a bump in the road of life. I was not very active for a year. I only did running. I allowed things to calm down because the nerve compression from the clot is what causes the pain. After a year it's much better and now it's been 4 years. I kind of know what irritates things so I keep those things to a minimum. Hang in there. It will get better. Don't rush into anything. Allow your body to heal and adjust. 

Subclavian vein thrombosis

by Macfadg - 2023-07-18 06:53:55

It helps! Thank you. Did your thrombosis occur with the first or second implantation? I am also a golfer but can't really imagine swinging with confidence at the moment. I have noticed that my PM moves up and down as I raise and lower my arm. I am wondering if this is normal. I will post a query on the general forum as well but would be interested in your experience.

Please post on the general forum

by Gemita - 2023-07-18 09:17:50

Macfadg, yes please post on the general forum any new questions you have in case your questions are missed at the end of your earlier threads.  Thank you.

I do get some movement with my pacermaker also, for example when I am bending forward or stretching out.  They do sometimes suture the device in position, to hold everything in place.  Some surgeons do a better job than others!

Do send a private message too to PacedNRunning to make sure that she sees your question.

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