SNITCH... anyone with SVC issues

Hey Snitch, I know you had issues with SVC scarring post ablations. Can you tell me what your symptoms were? I've been having this pressure feeling in my face/neck. Only way to describe it would be if you were to stand upside down and all the blood rushes to your head, that feeling like your head is going to pop! I have also been getting terrible bloody noses, which I NEVER get. My face is swollen. Feeling is worse when I lay down. My doctor was talking about SVC problems but he is just my primary care doc, not my cardiologist. I have a call out to my cardio doc. I just had US of neck that was fine, they looked at the major blood vessels, but of course couldnt see far enough down to assess SVC. What were your symptoms when they found your issue? In case you dont remember, I have had 2 SA node ablations in the past 6 months.

2 Comments

SVC syndrome

by golden_snitch - 2013-05-18 02:05:48

Hi Sam!

I had the same symptoms you describe, with all the pressure in my head/neck. Also was short of breath, especially when laying down without several pillows. I was hoarse, and the veins under my tongue where swolen. My face was red and swolen. I didn't have all of these symptoms at once, but with time passing they added up. At the end I developed a dry cough, but when I was diagnosed they also found a pericardial effusion, so the cough could have been caused by that. If you sent me your e-mail via private message, I can send you a paper two other members and I have written about our experience with SVC syndrome (you could also give that to your cardio).

Call your cardio. You need an imaging study, either a CT with contrast dye being injected in both arms or a venogram with contrast dye. An ultrasound won't show SVC syndrome. And if it really turns out that you have this syndrome, and your cardio starts talking about stenting the vein - run away! For SVC syndrome you need to see real experts. It's a rare diagnosis, so big heart centres usually have at least a little bit more experience with it.

Best wishes
Inga

scared

by sam78 - 2013-05-21 05:05:48

Hey thanks for the reply. The problem is I have a bad reaction to IV constrast. And of course the list of. potential complications is huge and risky for having an mri done. Ep doc says he would have to be there if they did. the mri. I told him I would much rather do a ct scan but the radiologist would have to agree to having a ct which I dont think they will do. At any rate I am getting on an airplane in 36 hours and I am scared shitless! Ep doc said it would be totally fine to go. My gp sent me to a ent doc today and he was freaked out saying I should not be getting on a plane. At this point Idont know what to do. I know something is terribly wrong. I bathed my nephew and just leaning over the tub made me SO blue in the face it was awful. My arms both have a blueish tint to them.I have checked my bp and sats many times and they have been fine. The fullness feeling is worse at night and much worse when I lay flat. The trip is very important so I want to go. ughh i just dont knowwhat to do.

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