SVC Reconstruction

[SJ3565]

Hello
I had my superior vena cava reconstructed in September due to a blood clot - which I am told now was more fibrous than clot like. The SVC was completely occluded with very poor collateral vein development. It took 7 months to diagnose because young people don't get blood clots. I am 39. Current theory: the clot was because of the port I had at the time.  I am immune deficient not malignant with anything.  They reconstructed the SVC with a piece of my pericardium.  One of the echos done during a bout of post op pneumonia shows a possible valve issue.  Not sure if it is infection related, flow related or will resolve on its own.  My questions are - What is the long term outcome of a SVC reconstruct? Will it hold for forever?  The valve issue is being monitored but not sure if it won't need replacing sooner than later.  As I am still having alot of pain from the sternal incision I cannot imagine opening up my chest again.  How long does it take for the sternal pain to stop? I have some homosysteine issues but no other clotting mechanism probs. Thanks for any input.

[CCF-M.D.-RCJ]

SJ3565,

Thanks for the post.

Q1:"What is the long term outcome of a SVC reconstruct?"

No one can tell you the answer to this question.  There are simply no long term studies documenting outcomes.

Q2:"How long does it take for the sternal pain to stop?"

Usually within 6-8 weeks, most patients feel considerably better, with just residual twinges.  You should have had almost complete resolution by now.

Your case will need a follow-up based approach.  Each follow-up will have to be compared to the previous to help guide future studies.

Best of luck.

[snitch]

hi there!

good question! i have underwent the same procedure due to complete superior vena cava obstruction after sinus node ablation. also have got a pacemaker with a lead in the SVC.
surgery took place in september last year, and today i have had an angiography to check on my SVC and the other veins: everything looks great!

i was wondering how often you are having check-ups and if you are on any blood thinning medication? i'm on plavix.

would be great to hear from you since there are not a lot of people out there who have had SVC reconstruction. my e-mail is:
***@****

i'm 22 years old and live in germany.

best wishes,
inga

[ccu nurse]

It is kind of ironic to read your posting since I have tried to post everyday for awhile asking about SVC occlusion and possible treatments and then I saw this posting and was glad it was at least a good opportunity to talk and get some other advice from others with similar problems. I am a 27 y/o female ICU nurse who has had 4 ablations in the past for multiple atrial arrythmias, junctional tach, and inappropriate sinus tach and am awaiting my 5th ablation at Cleveland Clinic when proper approval is received by FDA for new catheters.I have had extensive amount of radiofrequency burns in the past. I also have a dual chamber pacemaker for last 3 years. Every single ablation procedure every doctor always mentions severe amt. scar tissue and trouble accessing SVC and also they had alot of trouble with pacemaker lead placement via SVC due to scar tissue, but then I come back to my hometown and its never addressed again. My cardiologist here is concerned about it and suggested I may need more tests to check for occlusion. I have a great deal of severe chest pain at times, increasing more so in the last few months and I wondered if it could possibly be caused by that or something else(I also have extensive medical history with uncontrolled hypertension,selective baroreflex failure, and brainstem stroke to name a few)? I wondered what kind of other symptoms made you and your physicians aware that something was wrong? I don't have any classic symptoms like engorgement of neck and chest veins. I wondered if someone could also tell me the very best test that would indicate this problem definately and is a CT of the chest at all helpful in indicating this? Also, is it possible to have stenting of SVC without total reconstruction? Last,I used to take Coumadin for a year after the stroke but it was stopped due to risk of bleed from the unc. hypertension, so I was also wondering about if I still needed some type of blood thinner? I would appreciate any input and advice on where to go from here and what are the risks of not pursuing the issue? When you have so many problems it is hard to determine what to do next.

                    Thanks in advance!!!!!

[snitch]

hi there!

like you i have had several ablation procedures for atrial tachycardia. all together six procedures for inappropriate sinus tachycardia, av-nodal-reentry, two ectopic atrial tachycardias and atrial flutter. i received a single-lead pacemaker after complete sinus node ablation (six weeks later due to low heart rates and pauses). that was four years ago. my SVC occlusion developed very slowly.

a CT and a venogram (angiography) with dye showed that my SVC was almost completely blocked. there were blood clots in my left subclavian vein and lots of blood in my pericard.

i did have the classic symptoms: shortness of breath, pressure in my head (which got worse when bended over or layed down), problems swallowing, sometimes chest pain, swellings in my face (in the mornings), cough. it all started with shortness of breath, and then one symptom after the other followed. it was just that one could not see my veins at the neck more than before.

i would recommend that you get an angiography done or at least a CT. also, i would not undergo another ablation, if you have any other option to controll your arrhythmia. at least, get the angiography before you get the ablation. the scar tissue is a real problem. i have had more than 100 ablations only for my sinus node, so you can imagine the amount of scar tissue in that area. and that's what is supposed to have caused the occlusion.

please, keep me posted! i'm looking forward to hearing from you soon!

my very best wishes & take care,
inga

[SJ3565]

A CT Scan or MRI would be helpful in dxing an occlusion.  I would seriously consider asking about a reconstruction vs. stent.  I am told there aren't any studies supporting a stent lasting long at all and if they stented the occlusion - which they only do to malignancies to buy some time -  you kinda make it a mess if they need to reconstruct later.  I was told the best option for a young person is reconstruction. I was not having all of the classic symptoms at first.  My eyes would be swollen in the morning when I woke up and then resolve mid-day. Eventually progressed to the severe facial swelling and passing out when I bent over.  I had scan and x-rays - they just where never of the right area.  Finally I was having my port replaced and they could not advance the line and they injected some dye and found the clot.  Then they did an MRI that went lower in the chest and could see it clearly.  It was on the previous MRI when they went back and looked - they just overlooked it.  I hope you can get thru and post - hang in there.  If I can help let me know.

[snitch]

hi, SJ3565!

i was wondering if we could get in touch. it might be good just to compare our follow-up since i do not know anyone else who has underwent svc reconstruction. my cardiologist does not have any experiences with patients like us, too, so i think it would be really helpful to have someone in comparison. what do you think?

i have put my e-mail address into my first post here.
it would be great to hear from you!

best wishes,
inga

[ccu nurse]

Thanks Snitch and SJ3565 for your advice, I really appreciate the helpful comments. I forgot to mention in my first post that I also have severe facial swelling(especially of eyes)upon awakening that resolves after a few hours and I also have problems with bending over(so I guess it sounds like I too may have the same problem due to all the past ablations). I guess I better get some tests done before this next ablation (I really don't have another choice but to have this 5th ablation because I am maxed out on all antiarrythmics, beta blockers, and calcium channel blockers and HR is still 160-180's lots of the time). I also forgot to mention that I have a pacemaker, so that rules out the chance of having an MRI as a diagnostic tool(and the pacemaker also increases the chance that the SVC may be occluded).I would like to stay in contact and hear also about how the both of you continue to do in the future.Thanks for your help and I will keep you posted. My email address is ***@****. Thanks again!!

[cdhheidi]

My son is 7 and we have been dealing with SVC stenosis/thrombotic issues for 4 1/2 yrs.  He has 2 stents placed already, and is about to (hopefully!) undergo yet another stent placement.  He has had a central line since he was an infant due to TPN dependency as he has short bowel syndrome.  I am encouraged by the stories here, and wanted to thank you for posting. I just found this site, and though I know most if not all are adults, it gives me hope for my son as he goes through these procedures (about to be his 7th cath/angioplasty/stenting combo).  I have often wondered about reconstruction, so it is helpful to see that others have had it done succesfully.  Thanks again, cdhheidi