Superior Vena Cava

I would seek advice

by Gemita - 2023-03-29 08:28:23

Steve, I am sure you have posted before, but your Bio is completely empty.   It would be helpful if we had more information.  In view of your continuing symptoms, I would keep up the pressure and go back to your doctors for further advice.

Pressure, tightness in the neck and prominent jugular veins for two to three weeks is certainly not normal and suggests to me some sort of a blood flow problem, possibly due to vein trauma during lead revision or due to some other heart or circulatory problem, but it needs a diagnosis in my opinion and the sooner the better.

I had partial blockage of my subclavian vein following pacemaker implant due to vein trauma which caused pressure type pain across the whole of my collarbone, going up into both sides of my neck.  It was very uncomfortable.  I eventually developed collateral veins/circulation around the obstruction which relieved the pain but it took months for the discomfort to go away completely, so you need a diagnosis.  Please keep us updated and I hope for the very best

what Gemita said!

by Tracey_E - 2023-03-29 09:04:50

You need to be seen. Have you had an ultrasound to check out the veins?

Thank you

by Steve Sed - 2023-03-29 09:11:33

I'm in the UK. My pacemaker clinic refuses to engage on it and insist I see the GP. They say they see no issues from the download. The GP sent me to A&E as he felt it was concerning where the CT scan & X rays were performed.

I doubt I'll get any further help. The impression is that the symptoms are imagined & maybe my jugular veins had always been enlarged? The health service here is in crisis & that isn't helping.

Bio

by Steve Sed - 2023-03-29 09:12:17

I've added some bio btw. Oh - never been here before.

Collaterals

by Steve Sed - 2023-03-29 09:16:22

@Gemita - I did wonder whether I'd get collaterals eventually to overcome the issue. I run, so I was hoping this would speed up the process.

Collaterals

by Gemita - 2023-03-29 09:46:28

Steve, with an ICD and after a lead revision, I wouldn't wait for collaterals to form if you feel you are in trouble and need help now.  I was already on an anticoagulant for Atrial Fibrillation which may have speeded up the process.  

I also initially had a CT Scan with contrast which failed to show anything significant.  I was advised to get a venogram to have a look at specific veins and how blood flowed through them, but it was obvious to my doctors from my ugly purple veins surrounding my device that I was developing collateral circulation.  Mother nature has a wonderful way of stepping in sometimes.  

SteveSed

by piglet22 - 2023-03-29 09:54:50

The first part of your post chimes well with my experiences so far.

It sound a bit like my UK regional hospital in the Southeast.

I was getting nowhere with the physiologists who don't seem to want to pass problems onto the consultants.

Eventually I had to go through the GP who can only do so much apart from write letters.

I would agree with all the others in saying definitely get looked at with the veins.

Not a scare story, but my healthy next door neighbour saw a consultant about his hearing. The consultant spotted a lump in my neighbours carotid artery.

It was removed promptly and my neighbour had it as a souvenier. It was a pea sized lump of matter and I reckon he had a very lucky escape.

UK healthcare

by Steve Sed - 2023-03-29 11:34:14

It's the first time I've felt let down by the pacing team. The issue I'm having is pretty likely to do with the ICD. It's a known but rare complication, but my symptoms are mild compared to some of the others I've read. It's obvious that somewhere there's an obstuction, but rather like backache, it's hard to prove & the doctors say that some people have more enlarged veins than others.

I'm in Newbury btw and my hospital is Basingstoke. 

Now is the time to toddle down to A & E...

by crustyg - 2023-03-29 12:57:22

If your EP-doc won't see you as an urgent patient in Clinic then your only option is to treat this as a Medical Emergency.

Stop delaying, act now.

crustyg

by Steve Sed - 2023-03-29 13:45:53

I've been to emergency. That's where they carried out the CT scan.

jugular veins

by AgentX86 - 2023-03-29 15:54:20

It's the "for 2-3 weeks" part that would concern me.  This means something, probably serious, has changed.  I know nothing of the UK's NHS so wouln't have a clue how to push the bureaucracy but I'd certainly be trying.

Perhaps you'll find someone who can do a doppler ultrasound....

by crustyg - 2023-03-29 15:55:45

Since flow is what you want and need, IMHO a doppler u/s would be better.  Requires more skill and effort than a CT-scan though.

*IF* you have a clot obstructing some of your SVC return, it's much easier to treat when small.  Leave it a long time and it's a lot more difficult.

In your shoes I would have enabled my internal 'I don't take No for an Answer' mode.  Maximum charm, but complete obstinacy.

And if one of the other causes of raised JVP is what's going on, u/s is still the best.  You might even get someone who can move the probe down to your heart and check over your chambers (==echocardiogram).  Still better than a CT-scan.

I would also make a subject access request to get ALL of my records and imaging from the hospital - and make it now.  You won't get the data in less than a month, but the fact that you've asked for it (your legal entitlement) might spark some awareness in them...

Distended external Jugular

by Rch - 2023-03-31 00:19:16

The ED did the CT and CXR to rule out an extrinsic compression on the SVC or heart failure. That's very good news. Nonetheless since you do feel the extended JVs which are uncomfortable, some sort of doppler flow should be done to r/o thrombus or other obstructions if any to the venous return. I would also urge you to see your Cardiologist to rule out right heart failure. Most likely you don't have any serious issues based on your lack of symptoms relating to your heart. Nonetheless, please insist on seeing at least your GP and get the ball rolling as others have suggested!

Hi Steve

by Amyelynn - 2023-04-09 03:23:06

I was diagnosed with SVC Syndrome about three weeks ago. I had a lot of test: ultrasound, echo, ekg, CT scan with contrast and none showed any bloackages. Thanks goodness for the interventional radiologist deciding to still go through with the venogram (in both arms) to rule out a vein issue 💯. Well turns out I have a 90% blockage in my SVC, an 80% blockage in my left innomniate, and a 50% narrowing in my right subclavian. He performed 3 balloon angioplasty's in these three blockages.

My symptoms have since gone away. The symptoms I was having was facial flushing when bending along with feeling of pressure in head and neck, shortness of breath and at times dizzieness and near fairing when exerting myself (gardening... a lot of bending)

I was having these worsening symptoms for five years... many doctors didn't listen to me and told me it was normal or would perform one test and say it came back normal and they didn't know what the issue was. I finally got new insurance this year and started going to a different hospital (where I was still unheard/not believed by many doctors) but I kept pursiting. My famous term is "this is not normal for me; something is not right"

I am now in the process of meeting with a new EP who is a lead extraction specialist to discuss the extraction of my 25 year old abandoned leads. However I have a feeling they will not take them out until/if I start exhibiting symptoms again. 
 

Keep pushing!

Amyelynn

by Steve Sed - 2023-04-09 05:47:22

I prepared an email to my cardiologist outlining my symptoms (as yours without dizziness), then hesitated a couple of days before sending it. Then miraculously the symptoms disappeared three days ago, but have reappeared very briefly twice since. It's very odd.

Cardiology appt

by Steve Sed - 2023-04-24 06:30:30

This is a strange thing as symptoms seem to wax & wane. At the moment it's particularly troublesome, bu pleased to say the outcome of my email was a letter with an appointment at the end of May. 

Update

by Steve Sed - 2023-08-06 02:13:11

My symptoms suddenly worsened. My head went blue and became swollen and I was literally gasping for breath. I was admitted to hospital with  a 100% occlusion caused by blood clots. I was in for 12 days on Heparin IV. There was seemingly no treatment plan if the Heparin failed. I'm now on Warfarin and Heparin injections until the INR reaches 3.  

There was in my opinion some medical negligence because a prescription of thinners before the clot appeared never arrived and a letter requesting it was only generated after the clot. Furthermore, I contacted the team responsible for my care with a photo of my blue face and description of my worrying and worsening symptoms and was told they'd contact me after a multidisciplinary team meeting the following week where they would discuss the stenosis of my Vena Cava the venogram had identified.