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Innominate vein stenosis
Hi there!
I have recently been diagnosed with left innominate vein stenosis (or obstruction almost). My cardios say it is caused by the pacemaker-lead which is present. They furthermore say that this is common in pm-patient and doesn't need treatment. The thing is that I'm having symptoms like pain in my left arm, headaches, sometimes swelling of the left side of my face, pressure in my head, especially behind and around my left eye. Also, this summer I cannot tolerate heat at all. Symptoms worsen with heat, and I also get short of breath and every breath in hurts. My symptoms are not permanent, they come and go.
I have heard from some docs that putting me on Coumadin might help. I'm now on Plavix. I have had superior vena cava reconstruction two years ago. SVC syndrome was caused by scar tissue which was caused by three sinus node ablations.
The radiologists think that I need another venography, because the CT does not clearly show, if the SVC is ok. Other findings: ultrasound shows that right jugularis vein is huge compared to the left side. Echo shows slightly widened coronary sinus.
What do you think? Is another venography and Coumadin an option for me? Or can one generally say that innominate vein stenosis in pm-patients does not need treatment? Also, is Plavix helpful at all in my case? I do have collateralization, but apparently it is not enough.
Thanks a lot for your help!
Warmest regards,
schnatz (24 years old)
I have recently been diagnosed with left innominate vein stenosis (or obstruction almost). My cardios say it is caused by the pacemaker-lead which is present. They furthermore say that this is common in pm-patient and doesn't need treatment. The thing is that I'm having symptoms like pain in my left arm, headaches, sometimes swelling of the left side of my face, pressure in my head, especially behind and around my left eye. Also, this summer I cannot tolerate heat at all. Symptoms worsen with heat, and I also get short of breath and every breath in hurts. My symptoms are not permanent, they come and go.
I have heard from some docs that putting me on Coumadin might help. I'm now on Plavix. I have had superior vena cava reconstruction two years ago. SVC syndrome was caused by scar tissue which was caused by three sinus node ablations.
The radiologists think that I need another venography, because the CT does not clearly show, if the SVC is ok. Other findings: ultrasound shows that right jugularis vein is huge compared to the left side. Echo shows slightly widened coronary sinus.
What do you think? Is another venography and Coumadin an option for me? Or can one generally say that innominate vein stenosis in pm-patients does not need treatment? Also, is Plavix helpful at all in my case? I do have collateralization, but apparently it is not enough.
Thanks a lot for your help!
Warmest regards,
schnatz (24 years old)
A related discussion, DVT's was started.
Thanks a lot!
Yes, I understand that my case is a bit tough, and that I'm too young for this. Especially since I wasn't born with heart problems. It started with inappriate sinus tachycardia getting faster and faster. During the third ablation my heart rate was 120 - 140 bpm at rest, even at night. No medication helped. You can imagine that the third ablation was followed by the single-lead pacemaker implant. However, I developed new tachycardia, and needed three more ablations to treat AVNRT, ectopic atrial tachycardia, and atrial flutter. Then I needed pacemaker-revision, because I had so much pain all around the pacemaker, in my left arm, and left side of my neck. A year later I was diagnosed with severe SVCS, followed by open-heart to reconstruct the vein. This basically is my story from the last six years.
What I think is that I'm also too young for risking anything now. I really want to be ok in the next 60 years. So, in my opinion it is better to be a bit more careful now. With the new stenosis the veins in my left arm are so bad that you can hardly access them - and this in a 24-year-old!
I just feel that something's wrong, and everytime I felt like this in the past, I was right. The radiologist suggest a venography, but since it was already difficult last time (in February), because the veins are so bad, my cardio doesn't want to go ahead. Also, he said that even if the innominate vein is obstructed and causing problems, he would not know how to treat me. Stent with a pacemaker in the vein does not seem to be a good idea.
Maybe I really need to get a second opinion. But thanks again for your input and advice - it is very much appreciated!
schnatz
Yes, I understand that my case is a bit tough, and that I'm too young for this. Especially since I wasn't born with heart problems. It started with inappriate sinus tachycardia getting faster and faster. During the third ablation my heart rate was 120 - 140 bpm at rest, even at night. No medication helped. You can imagine that the third ablation was followed by the single-lead pacemaker implant. However, I developed new tachycardia, and needed three more ablations to treat AVNRT, ectopic atrial tachycardia, and atrial flutter. Then I needed pacemaker-revision, because I had so much pain all around the pacemaker, in my left arm, and left side of my neck. A year later I was diagnosed with severe SVCS, followed by open-heart to reconstruct the vein. This basically is my story from the last six years.
What I think is that I'm also too young for risking anything now. I really want to be ok in the next 60 years. So, in my opinion it is better to be a bit more careful now. With the new stenosis the veins in my left arm are so bad that you can hardly access them - and this in a 24-year-old!
I just feel that something's wrong, and everytime I felt like this in the past, I was right. The radiologist suggest a venography, but since it was already difficult last time (in February), because the veins are so bad, my cardio doesn't want to go ahead. Also, he said that even if the innominate vein is obstructed and causing problems, he would not know how to treat me. Stent with a pacemaker in the vein does not seem to be a good idea.
Maybe I really need to get a second opinion. But thanks again for your input and advice - it is very much appreciated!
schnatz
Hi Schnatz,
your too young for this. These are tough questions that are more dependent on clinic judgement than guidelines. It is true that veins often stenosis with pacemaker leads. What is different about your case is that most people do not have a history of SVC reconstruction, SVC syndrome, and multiple abaltions.
Is another venography and Coumadin an option for me?
If your radiologist and cardiologist do not think they have adequate pictures of what is going on and you are having symptoms, I would proceed with the venogram. It is a relatively simple procedure with low risks. I do not think the coumadin will help unless a clot is involved.
Or can one generally say that innominate vein stenosis in pm-patients does not need treatment?
Usually this is true, but I haven't met many people with symptoms from it either.
Also, is Plavix helpful at all in my case?
From everything you told me above, I do not see the indication for plavix. There must be more to the story though -- most 24 year olds do not have a PPM and multiple SN ablations. I don't have enough information to answer this question.
You have a tough problem. Gather the information and find out your doctors opinion. If you are not satisfied, look for a second opinion.
I hope this helps.
your too young for this. These are tough questions that are more dependent on clinic judgement than guidelines. It is true that veins often stenosis with pacemaker leads. What is different about your case is that most people do not have a history of SVC reconstruction, SVC syndrome, and multiple abaltions.
Is another venography and Coumadin an option for me?
If your radiologist and cardiologist do not think they have adequate pictures of what is going on and you are having symptoms, I would proceed with the venogram. It is a relatively simple procedure with low risks. I do not think the coumadin will help unless a clot is involved.
Or can one generally say that innominate vein stenosis in pm-patients does not need treatment?
Usually this is true, but I haven't met many people with symptoms from it either.
Also, is Plavix helpful at all in my case?
From everything you told me above, I do not see the indication for plavix. There must be more to the story though -- most 24 year olds do not have a PPM and multiple SN ablations. I don't have enough information to answer this question.
You have a tough problem. Gather the information and find out your doctors opinion. If you are not satisfied, look for a second opinion.
I hope this helps.
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