Pacing wires, low aortic valve, things I didn’t learn about until after surgery…

[Forrest]

Here are a couple of interesting items I learned about after my surgery that I wasn’t aware of going into surgery. Just curious if anyone else had similar experiences:

1) My temporary pacing wires were permanently left in. These are usually taken out before you go home, but since my kidney, liver and pancreas were trying to shut down I had to stay in the ICU several extra days to resolve this issue. Because of these organs being extra pissed off I wasn’t clotting well enough for my internal bleeding to completely stop, my drainage tubes ran reddish pink for several days. So once they got this under control they said I was still a bit thin in the blood and they didn’t want to pluck off my pacing wires in fear that I’d start to bleed internally all over again. As you probably know, the wires (I think there were 6) are usually held on the surface of the heart with a single stitch so they can eventually be pulled out easily. The physician assistant said that my having to leave them in isn’t that uncommon. He pulled on them just taught enough to snip the exterior portion of the wire and they sucked back into my body. He said my body would encase them in scar tissue. I’m told they shouldn’t present any future problems at all. As I first started to swing my golf clubs at full speed I noticed some twinges in my lower rib cage and thought that it might be the encased pacing wires pulling on young scar tissue as the wires settled into their new home, but after six months I’ve never had any more problems with this issue (of course the twinges could have just been regular surgery healing issues). Has anyone else had their pacing wires left in?

2) Two cardiologists and my surgeon thought I had a bicuspid aortic valve by looking at my prior echos and even my TEE’s. But during the operation it was discovered that I was actually “unicuspid”, which is very rare and usually more restrictive. I believe I’ve heard that most unicuspids experience heart problems while in childhood or by their 30’s, but I didn’t even know I had a congenital heart issue until much later. I feel fortunate my unicuspid lasted longer, seems to tell me that the heart tries the best it can to be resilient. Has anyone else been determined to be unicuspid?

3) As part of my congenital issues, the surgeon discovered during the operation that my aortic valve was positioned rather low. So he made extra cuts and fixed this issue, he said it could also help my mitral valve prolapse by re-suspending it. While in there he also decided to debried my mitral valve. After surgery I asked if this was considered to be a mitral valve repair of sorts, he said no, it’s not considered to be a repair. I’m glad he tried to fix extra stuff while in there. Has anyone had this low aortic valve issue? And has anyone had their mitral valve debrieded during their aortic valve replacement?

 

[Fundy]

For some reason, having the pacing wires unable to be removed was one of my biggest fears. Woman next to me in step down unit had a pacing wire go dead or something so they decided to remove it, and it didn't want to come out so they snipped it and left one of them. I've read on here, that often a wire seems to be stuck and they get snipped and left. I was definitely fearing that happening to me for sure.


Its probably not that big of a deal having them remain in, but when they went to remove them before I left I was very fearful of them not coming out. Both came out easily.

It'd be interesting to know what percentage of the time at least one wire does get left in though?

 

[Jkm7]

If you are asking for us to report our experience about the wires....
I had two OHS and both times all the wires came out easily.

 

[Adrienne]

One of my pacing wires didn't come out easily so they left it in. What worries me is that if I ever need an MRI, I think just having the pacing wire attached to the heart scares them off from doing the MRI. There is one member whose son had an MRI despite having a pacing wire left in, but I think there was all kinds of red tape to go through.

 

[Forrest]

Thanks for the above comments. It’s always intriguing to hear about others’ experiences. And I didn’t even think about the MRI issue, appreciate that feedback in case I ever need one of those. I use to joke to myself that if I ever get hit by a lightening strike that I’ll have a better chance of surviving it because my heart will get the jump start of its life since the bolt of electricity will travel up my pacing wires and act as a natural defibrillator :biggrin2: . But the MRI thing is probably more realistic (thanks Adrienne).

Are there any unicuspid aortic valves out there? I think I read that the occurrence rate is 1 in a thousand bicuspids are actually unicuspids (but don’t quote me). Also, any folks who had a lower positioned aortic valve?, and did anyone have their mitral valve debrided as part of their aortic valve replacement surgery? Or any similar experiences are welcomed…

 

[Mike1952]

Hi Forrest,

The nurse told me they might pull or the pacing wires or leave them in, it was up to the PA. It ended up they did pull them (came out easily, but it was a strange feeling). As far as my Aortic valve goes (severe leaking), Dr. Luber said one of the three flaps was just dangling there, doing nothing. In his opinion, perhaps it was a congenital defect that got worse over time. I'm sure glad they found it and fixed it as I was pretty asymptomatic other than an occasional light dizzy spell while sitting down.

Mike
AVR 8-9-2012

 

[Carol]

My Dayghter had an emergency AVR in Feburary. She kept passing out. The surgeon said she had a unicuspid aortic valve. We did not know she had a valve problem at all. Surgeon said it closed down like a toilet seat. She has done very well so far.She was only 45.

 

[GeddyLee]

After my AVR in July of this year, they found out that I had a unicuspid valve. It had never really given me any trouble until I turned 27 in March of this year.

 

[Forrest]

Mike1952, good thing you caught your leaky valve before things progressed. Our experienced surgeon has seen thousands of valves, so if he thought your’s was a type of congenital valve issue then it’s probably a good chance that it was. Hope your recovery is going well.

Carol, glad your daughter’s unicuspid was finally detected, sounds scary, but good thing she’s doing a lot better now. I think the rare unicuspid aortic valve typically presents itself earlier than average because of its more restrictive shape (your surgeon’s description of a “closed toilet seat” really drives this point home). For some reason your daughter and myself had our unicuspids last longer, but when they finally went south they went fast! I went from not knowing I had a heart problem, to being diagnosed with severe stenosis with only a .5cm square opening, yet basically asymptomatic besides occasional mild fatigue, but that soon went to occasional lightheadedness after workouts, and I contracted Endocarditis less than two months after being diagnosed. Shortly after that my cardiologist and I decided it would be best to have my valve replaced while the rest of my heart was still in good shape, this was just 5 months after being diagnosed. Surgeon said my unicuspid valve was like a “tiny slit of a door, barely opening and heavily calcified”.

GeddyLee, glad your unicuspid valve was found before any larger issues occurred. Sounds like your heart compensated well enough before it started to degrade to the point of needing surgery. Best wishes as you continue with your recovery.

 

[Forrest]

GeedyLee, I meant to say that it sounds like your heart compensated well until your "valve" degraded to the point of needing surgery. Many times our heart as a whole is in good shape, just the defective valve is making it work harder. And of course if dealt with timely (before any permanent muscle damage) the heart usually rebounds and stays within the normal range (numbers).

 

[Lynlw]

One of my pacing wires didn't come out easily so they left it in. What worries me is that if I ever need an MRI, I think just having the pacing wire attached to the heart scares them off from doing the MRI. There is one member whose son had an MRI despite having a pacing wire left in, but I think there was all kinds of red tape to go through.

I think you are probably thinking of Me. Justin has old pacer wires in and has had a few MRIs with them and yes we had to jump thru hoops the 1 time to get it approved by the "MRI safety commitee" which wouldnt have been as frustrating if it wasnt his 4th MRI with them.

BUT his is a little different, Justin's are old permament pacemaker wires, from when he had to have a pacer removed but since he wasnt using it at the time, they didnt put a new one in, so he just has the old perm wires and no pacer.

One big difference is, Justins pacer was n his abdomen, since he got it the same time they were replacing part of his conduit and they tend to (at least then) put childrens in the abdomen, Under the bottom ribs in children since it is a little more protected, so not only are his wires much longer than they would have for temp wires, but he has extra length coiled -since he was 10 and they have to make them long enough there isnt a probem if you grow and the wires are too short. "Coils" are another one of the things they worry about for MRIs
Thats one of the reasons they didnt give him a new one when the old on wasnt working right, since he was 16 or so they would put the next one in the normal shoulder area, so it would have been pretty much 2 seperate surgeries, one in the abdomen to remove the old on and new leads and pacer in the clavial area. They thought he'd probably go into Complete Heart Block again when he had another cath or surgery, but Knock on wood, he's had several of each since then witout needing one.
Anyway, luckily Justin's are epicardial, like temp wires and not like most perm wires that go inside the heart, so that made it a little safer too. See at least I learned alot when it was going back and forth between the cardiologists and MRI "safety" com. So at the end of the day for HM the benefits of the MRI outwighed the risks, esecially since he already had a few with no problems

FWIW Most things I read say altho tech there is a small risk with the temp wires, it is usually ok. You might want to bookmark this incase it ever comes up http://www.mrisafety.com/safety_article.asp?subject=225

 

[Adrienne]

Thanks for the article, Lyn. I not only bookmarked it, I printed it and put it into a file so that if I ever need and MRI, I can bring along the article!!!