Blood clot following pacemaker insertion?

Posted by kathyhg @kathyhg, Dec 17, 2020

Hi, I am new to this forum but a regular on another forum which has been so helpful with information and so I thought I’d see if anyone can relate to my experience.

I got a pacemaker in December 2011 and a blood clot in my subclavien artery approximately 14 months later – which was manifested by a swollen left arm. At the time, my physician said that the blood clot originated in the artery because of the hardware and it was slow growing, which is why it took 14 months to cause the symptoms in my left arm. I was on warfarin for 6 months to dissolve the clot and have been on ASS 81 mg since then.

I wonder if anyone else has had this experience? I’ve recently seen a hematologist who was not familiar with this kind of situation so I’m second guessing myself. At the time that i got the blood clot, i recall reading that it isn’t uncommon for someone to get a blood clot after pacemaker insertion because of the hardware (foreign object in the artery). I’m wondering if I should see an electrophysiologist? A regular cardiologist?

I appreciate that no one can really give advice here but it would be helpful to know if this has happened to others and what was the treatment/care plan.

Thanks in advance,

Hi, my past experience is to go to a electrophysiologist. I am from Columbus, Ohio and found a wonderful electrophysiologist to handle my care with my pacemaker and dyfibulator. They understand the device and how your body accepts this device.
The Cardiologist are not educated enough to fully understand the operation of one let alone put one in….In fact, if you find yourself going into a A-FIB that is the physician you want on your team.
My Cardiologist thought he knew want he telling about A-FIB and did not have a clue…If you are searching for one make sure they are connected with a A-FIB Clinic. My electrophysioligist is the head of the department. Hope this helps. Good Luck! Maddie

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Hi @kathyhg, great to see you in the Heart Health group too.

According to this article on pacemaker implantation (https://www.nhs.uk/conditions/pacemaker-implantation/risks/) "A blood clot can develop in one of the veins in the arm on the side of the body where the pacemaker was fitted. This may cause some swelling in the affected arm, but it usually settles in a few days and is rarely a serious problem. In some cases, you may be given anticoagulant medication, which stops the clot getting bigger."

It sounds like the blood clot has since been resolved. Are you concerned about ongoing issues and that is why you're seeking a second opinion from an electrophysiologist? Has this issue been resolved? What concerns do you continue to have?

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@kathyhg Hi and I can help on the blood clot side but mine didn't happen during my pacemaker time but after my Heart Transplant. I had devoped blood clots in the arteries near my heart and the treatment was just asprin it took probably about 6 months and they finially went away. I didn't have to do anything except asprin and I'm on it even now 3 years later. Hope that may help. Now @colleenyoung is correct that electrophysiologist is best for pacemaker issues I had one for that period of time. but I also had and have a regular Cardiologist for the basic structure of the heart. But my current transplant cardiologist took care of me during the blood clot time since it was due to a heart transplant. The heart has become very specialized. Even among electrophysiologist there are different types those that handle afib and like mine he was more the lower part of the heart the ventracules.
Have a blessed Day
Dana

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Thanks to everyone for sharing their experience. The blood clot in my left arm occurred about 14 months after the pacemaker was inserted. The radiologist who did the ultrasound and went over results with me at the time said it was related to a slow growing clot in my subclavian artery. At that time, I saw a hematologist who put me on warfarin for 6 months and still on ASA 81 mg a day, over 7 years later. I have since moved to a different city and have different doctors.

The reason I’m questioning this now is that i recently saw a hematologist who said that it was very unusual to have a clot so long after the pacemaker insertion and that i should follow up with an electrophysiologist. He (the hematologist) had some concerns about me taking ASA for the rest of my life for something that occurred over 7 years ago.

It sounds like it would be a good idea to see an electrophysiologist. I go for my annual pacemaker check in early January so i will inquire then. I will read the article on the link from Colleen (thanks!) to educate myself before i go to my appointment. I’ve learned through experience that it is really important to educate myself before seeing specialists so that I can ask the right questions and respond thoughtfully when they provide answers/explanations.

Thanks again,

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Blood clot on pacemaker wire

Did anyone have any activity restrictions after being diagnosed with a blood clot on the pacemaker wire? Travel by air-rigorous outdoor work-driving long distance -thanks

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@shirleyjoraanstad

Blood clot on pacemaker wire

Did anyone have any activity restrictions after being diagnosed with a blood clot on the pacemaker wire? Travel by air-rigorous outdoor work-driving long distance -thanks

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@shirleyjoraanstad Welcome to Mayo Clinic Connect, a place to give and get support.

Heart surgery and the insertion of a pacemaker is a serious surgery.

You'll notice that I moved your question to an existing discussion. I did this so you could connect with members @kathyhg @danab @maddie3211 who have discussed this same topic and may be able to offer support.

Below I have linked a previous discussion related to pacemaker recipients where members @bill54321 @ala123 @shortshot80 @elwood @lov @cupcake1979 @balubeje @ronbee @jimana @martishka @billmichalski @sotiredofit @ricke62 @catygirl @bevtar98 @marke92 @bibi12 have previously posted and/or were mentioned.
– Blood clot following pacemaker insertion? https://connect.mayoclinic.org/discussion/pacemaker-recipients/

You may wish to scroll through both discussions and read past posts to find information, connection, and support.

May I ask what direction your provider/doctor gave you beyond the restrictions regarding the blood clot?

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@shirleyjoraanstad

Blood clot on pacemaker wire

Did anyone have any activity restrictions after being diagnosed with a blood clot on the pacemaker wire? Travel by air-rigorous outdoor work-driving long distance -thanks

Jump to this post

Ok

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In reply to @meko "Ok" + (show)

Hi @meko, Welcome to Mayo Clinic Connect. Did you have something to add to the conversation? Have you been diagnosed with a blood clot after getting a pacemaker?

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@shirleyjoraanstad

Blood clot on pacemaker wire

Did anyone have any activity restrictions after being diagnosed with a blood clot on the pacemaker wire? Travel by air-rigorous outdoor work-driving long distance -thanks

Jump to this post

@shirleyjoraanstad Hi Shirly I'm Dana, Welcome!!
I did have a pacemaker and can see that with the wire probably running thru your arteries for some of them maybe they could develop a clot. I personally never had a clot the years I had a pacemaker but I have had clots after my Heart Transplant. So depending where the clot is and if it's totally.blocking blood flow they (at least for me) waited it out and the natural body functions cleared out.
So my question is how long have you had the pacemaker? And did they advice where it was?
Typically for blood issues like that a regular Cardiology Doctor handles clots and like stent issues. If it's a wire problem probally a EP Cardiologist would take care of the wire issue
Now for my years with a pacemaker, I had both types of Doctors and saw them regularly. Hope that helps?

As to restrictions only when I had the pacemaker first put in.

6 months now lifting over 10 lbs, or raise my hands over my.head
I hope you have a Blessed Day.

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@amandaburnett

Hi @meko, Welcome to Mayo Clinic Connect. Did you have something to add to the conversation? Have you been diagnosed with a blood clot after getting a pacemaker?

Jump to this post

I asked this question some time ago and don’t recall if anyone replied. I had a pacemaker inserted in December 2011 without any apparent difficulties. However, I got swelling and other signs of a blood clot in my left arm in early 2013 (over a year later).

After an ultrasound, I found out that it was related to the pacemaker leads in my subclavian vein and that the clot had built up very slowly and moved, resulting in the swelling in my arm – so the clot was not in my arm but manifested in swelling there. I was on warfarin for 6 months to break down the clot and I have been on ASA81 mg since then. My apologies if I’ve mixed some of this up but it was years ago and I’ve moved and not in contact with those medical professionals anymore.

I was recently referred to a hematologist after an unrelated medical procedure last fall. He was not familiar with a blood clot like this but thought it was unusual that I was still on ASA after one blood clot so many years ago. He referred me back to an electrophysiologist who I am seeing about this next week.

I always like to be prepared for medical appointments so have asked others on this form to share their experience. I have read that most blood clots occur soon after pacemaker insertion so I’d like to hear if anyone had this kind of blood clot and what the outcome/treatment was.

Thanks in advance.

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@kathyhg Hi, Kathy I don't have anything to add from.my post earlier but wanted to just say Hi. I had a pacemaker for about 10 years prior to my transplant and didn't have a clot for that reason but did have clots for the transplant and they only did aspirin, which I still am on, and the clots per an ultrasound did resolve about 6 months or so later.
Blessings
Dana

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