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Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

Got multiple ASDs. Should I go with one big device or multiple devices or OHS?

I’m 39 year old male. During a recent full health checkup, I was diagnosed with 2 ASDs. The bigger one is around 19x13x13mm and the smaller one 3x4mm and they are about 12mm apart.

I’ve consulted few cardiologists and everybody seem to have different opinions about what I should do about it. So I’m in a dilemma now. So far I got the following options:

  1. Close only the larger ASD with a device and leave the small one untreated. Doctor’s justification: If I was diagnosed only with the smaller ASD, they would just leave it untreated anyway.

  2. Close both ASDs using two separate devices.
    Doctor’s justification: Why do a half job when you can close both? I might develop problems later if I leave the small one untreated.

  3. Close both ASDs using one device with a larger diameter.
    Doctor’s justification: If a larger device is used, its boundary will be supported by the inner walls of the heart so dislodging is unlikely. Dislodging possibility is higher when you have two devices with no support from the surroundings.

  4. Open Heart Surgery.
    Doctor’s justification: When multiple ASDs are found, best option is to go with OHS, as it solves all problems with one go. No dislodging issues, no allergy issues, no infection issues and what not.

So here I am trying to figure out what the heck I should do now. I have no severe symptoms yet, but tests show that I have a mildly dilated right ventricle and I feel I go out of breath when I climb stairs. I really need to treat my ASD condition soon, so please share your thoughts on what the best and safest method you think that I should go with.

Thank you so much!

If the cardiologist mentioned the four options then perhaps all are equally good or did they lean towards a more favourable option with least risk and better long term outcome?

Dealing with both ASDs would seem to prevent long term follow up and risk of embolism and another procedure which may be open heart anyhow if second ASD is left alone and grows. Better to take care of both at once. Perhaps having the 2 ASDs closed by transcatheter with one larger device would be the best option if technically feasible as it avoids bypass and open heart surgery. If transcatheter is not possible at the time of procedure then there is plan B as a backup and open heart surgery would be the definitive procedure.

Do you feel the cardiologist was favouring a particular option?

This is tough as there may not be a clear correct answer…

Gold standard is still surgical closure. I would not get the device but have them both closed surgically.

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Thanks for the reply Dvorak.

The four options were not given by the same cardiologist, but by 3.

One suggested OHS. Another one said closing one is more than enough. And the last one said, let’s try to close both with one device and if that’s not possible, let’s go with two devices.

All device insertions are meant to be done via transcatheter.

One cardiologist voted against using one device to close both because then the device will also cover a large area of perfectly fine atrial septum and it will affect the dynamics of it. Also he said if a larger device is pressing against the edges of the heart’s inner wall, it might induce other problems later.

Personally I’m not favoring surgery so opting to go with a device closure. So it has sort of boiled down to a closure with one larger device or with two separate devices. Am I doubling my chances of developing issues related to devices if I opt for two?

Also what did you mean by ‘the smaller ASD might grow’? Can it become larger with time? It’s tiny at the moment and I lived with both for almost 40 years, so is there a chance for it to become any larger? (Perhaps the change of pressure after one closure will trigger the other one to grow? Is that what you meant?)

Thanks for your reply, but the issue is one of the ASDs is very small and (some) doctors claim it won’t do any harm even if left alone. So isn’t that too much of a hassle (and risk) to go with OHS while I can go for a much more easy device closure?

What do I lose if I opt for a device closure instead of OHS? I’ve heard many are opting for device closures nowadays. If we assume that I have only one ASD, would you still vote for surgery?

A friend of mine just had valve surgery on a congenetial heart defect two weeks ago. They discovered he had three valves instead of four and one of his three was 75% blocked/not working correctly.

They were able to go in via transcatheter with the warning that because they wouldn’t really know what the congential defect was until they got in there and tried to work with it, they might have to do open heart surgery. Thankfully, they didn’t have to open him up but they did find more than they thought was wrong and were able to repair/fix/replace everything all at the same time.

Now, I’m not a medical doctor but it seems to be if you’re going to get something fixed and there’s another issue right there, fix everything at once. I like options two and three and am leaning towards three. That makes logical sense to me – which is also what my friends’ surgeon at U of M hospital said. Why go in and then leave something untreated that could be a problem later? Fix everything within the scope of the task at hand!

azurelle

The smaller ASD May stretch over time and will need to be monitored by echo at regular intervals.

If your bigger ASD is 19 mm, usually the ASD plug will be 2-3 mm larger diameter, so maybe a 22 mm ASD occluder May be used by cardiologist (but that is determined by several factors when the cardiologist does the cath). The plug diameter for example is 22 mm but the whole diameter of the entire disc of the ASD occluder is probably 36 mm on left atrial side and 32 mm on right atrial side. If the second smaller ASD is near the first one that gets plugged, the remaining part of the disc may cover the small ASD and there will be in growth of fibrous tissue over small ASD from the Amplatzer

So probably having one ASD occluder properly fitted for the larger ASD May take care of the smaller one too.

You are correct when you say that having a larger than recommended ASD occluder can be potentially harmful over time due to risk of erosion. It is better to have a properly fitted ASD occluder.

Please go with the OHS, I had a gore helex device placed in 2014, the wire rim fractured in 2016. I just have to live and wait for my ticking time bomb to explode. Doctors will not remove it, have seen several. the mortality rate for an attempt to remove the device and sew the PFO is 80%. I have no endurance, gained 30 lbs, cannot exercise, have chest pain and they just give me more drugs which I detect, if I take the meds then I am unable to function at all. I spend about 15 hours a day in bed, the rest of the time I try to be up, but tire so easily. I wish you all the best. You are young, not being able to enjoy life is miserable, I wish I could turn back the clock, and have the choice to make.

Wow, I was not told those statistics when I had OH surgery to remove my Amplatzer device due to nickel allergy. I was told 2 - 5% chance of something going wrong. Mine was removed in Canada using a minimally invasive procedure (still OH surgery). I know for a fact they are removed in the US all the time. I am concerned you are being told they can’t be removed. I know they are removed at UCLA and at a clinic in Utah.

Elnino
If you choose to go the device route, please make sure you are tested for nickel allergy. It all went very wrong for me as I am severely allergic and the device used was 54% nickel. I was not asked if I had a metal allergy. I had OH surgery to remove it 19 months later. My OH surgery was minimally invasive and my chest was not opened, they went in under my right breast. More and more OH heart surgeries are going minimally invasive so I think this is something to look into.

Hey Cathy, thanks for sharing your experience and advice. None of the cardiologists explained me about a possible allergy after device closure, but I’ve read about it on Internet so when I questioned, almost all dissed it saying that’s very rare. They said they do not do any allergy tests (may be in my country they don’t do it) and just asked me if I every had allergies from wearing wrist watches or rings. And one cardiologist took it even further and told me that he did a device closure on someone who even had a metal allergy but it turned out fine with no complications. So his point was, even if I am tested positive, I still have a chance of not getting complications from a device closure. (See this too: https://www.karger.com/Article/Abstract/371511)

I’m dead scared of OHS and here, minimally invasive surgery isn’t mainstream yet. That’s why I am going to keep my fingers crossed for a device closure.

Thanks Dvorak, yes you got a good point there. But the separation is about 12mm so I don’t think the proper device for the larger ASD will effectively cover the smaller one unless I opt for a larger than optimal device.

May be I should just close the bigger one for now and see how the situation develops? I’ll have to keep tabs on my heart after this anyway so if I find that the smaller ASD is getting worse and I develop complications, may be I can do another closure at a later point? Is there any unforeseen catch in that plan?

Thanks for your kind advice. Only issue is that I’m yet to find someone who used one big device to close multiple ASDs (separated by at least 10mm). Almost all case studies I read about have used multiple devices to treat multiple ASDs. May be it’s due to their sizes and practicality issues but nevertheless I’m not yet fully convinced with using a larger than optimal sized device to close multiple ASDs. I wish I had them close together, but life isn’t always fair I know :slight_smile:

Thank you for the information, I am being treated at the Methodist DeBakey team at the Houston medical center, I will ask again. I have been tested poked prodded and the answer comes back the same each time, that the device is doing what it is supposed to and the fractured wire is not causing a problem. The doctors both the interventional cardiologist and the Chief of Cardiac surgery refuse to remove it. I know the device is causing my issues, I never had any of my current issues until the day the device fractured. I am told that scar tissue has surrounded it and they cannot remove it. I am not sure what the differences in the Gore Helex and Amplatzer device are.

Oh that’s unfortunate. I’m sorry to hear what happened in your case. But I’ve read about people who successfully removed their devices via surgery after developing complications. I don’t know why doctors are refusing to operate you. Are you talking about device removal via catheter? But please have faith, it’s not gonna go down bad. You’ll get better and will come back stronger for sure!

From my experience , i would prefer you to not to go for device closure…Many of those people who shared their experience with me, are on medicines even after 2 -3 years and are having frequent migranes and many other issues.

In my case i had a 3.1cm ASD which was closed through a least invasive surgery…I am doing well,it has short recovery .Read my experience here
There is robotic as well as manual surgery performed in this way…It took me almost 2 years to make a right decision…

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Thanks Gaurav, but unfortunately LIS is not mainstream here yet. Did you do the surgery in India? Many are suggesting device closure for me. I’m inclined to go ahead with it at the moment.

Hello friends, let me enlighten you with the latest developments in my story. If you are lazy to read this insanely long post, I’ve included a TLDR at the bottom :slight_smile:

So to give any new readers some context, few months back I’ve been diagnosed of multiple ASDs (1 big, 1 small) and were given different opinions for closure by cardiologists. Finally I have decided to go with device closure but that’s only for the bigger ASD and decided to leave the small one intact since it was said to be too small.

The day had arrived and I was in the cath lab all set for the device closure procedure. While the cardiologist was preparing my groin for the catheter, transoesophageal echocardiogram (TOE) was performed to visualize the holes. (TOE was done twice before as well, by different cardiologists and the reports had confirmed the two holes). I was sedated so wasn’t sure what exactly happened at this point of time, but later my wife told me that the doctor has called her and said that my atrial septum is like a swiss-cheese and device closure is not possible. And he has asked permission to perform an angiogram as now my only option is to go with OHS.

So while the catheter is in place and I’m on local anesthesia and sedation, an angiogram was done to see if there are any blocks in coronary arteries. The report turned out to be normal. Later I found out that this is a prerequisite if someone at my age is going to get an OHS done. So after about 1 and half days in hospital, I came home with a lost hope, an incision in my groin and an OHS scheduled for next week. I had to delay the surgery for at least 5 days since I’ve been drugged with blood thinning meds.

The week before OHS was the most stressful week I had ever lived. But I was finally happy because now I do not have any options to choose from and do not need to freak out thinking what if I choose the wrong one. This was the main concern I had since I’ve been diagnosed. As the cardiologist has explained, I have multi-fenestrated ASD (mfASD), which is not so common. According to him, going for a device closure is not possible due to the positioning of the holes as some are too close to edges and valves. So his suggestion was to get everything closed by a cardiothoracic surgeon under direct vision, hence OHS.

Since many of you on this thread have already suggested me to go with OHS, the decision was somewhat easier for me to take, although I was really scared of it initially. (BTW I asked the possibility of doing a minimally invasive surgery, but the surgeon refused saying he needs to do a proper job and my case is something he should go through the sternum. But I have to admit, minimally invasive surgery isn’t mainstream here in my country yet so expertise is hard to find as well, so I decided it’s better to go old-school despite the long recovery.)

So as planned I faced OHS surgery last week (15/12/2018). The multiple ASDs were closed using a pericardium patch. I was in the ICU for 3 days and another 4 days in the ward and was discharged two days back and now recovering at home. The surgery was a success and was confirmed by an echo test just before I was discharged. I’m feeling pretty well despite the usual lung capacity reduction and occasional incision pains. As a fact, I never thought the pains from the wounds after an OHS could be this less!

The only issue I found was my inability to sleep flat so I’m sleeping on a recliner chair and that sort of inducing a back pain now. I’m following the exercise routine given by my physiotherapist and I’m doing my lung capacity extension breathing exercises alongside. My incision is healing pretty fine, so far no complications. It actually looks better than I expected it to be. I’m on no meds, just paracetamol as a pain killer. That too to be taken only when necessary. Surgeon told me that I don’t need any special drugs since the patch was from my own pericardium.

As a final note, I really can’t thank enough for the advice and support I received through this site before surgery. I consider extremely lucky to have found this site and to have such caring members whom could motivate and guide a totally lost stranger to follow the correct path. Thank you very much! God bless everyone! :pray:

TLDR:
I’ve been diagnosed of multiple ASDs and was in a dilemma to decide on whether to go with device(s) or OHS. Although I opted for a device closure, final TOE test revealed that I’m not suitable hence went through OHS (via sternum). My final diagnosis was that I have mfASDs (multi-fenestrated) which aren’t dispersed in a way worthy for a device closure. Although OHS was the last on my list initially, I’m glad that I got the chance to rule out all other options with proper evidence and finally got it done the best way possible for me. If anyone else is in the same boat as me, I believe my story will give them hope. One more thing. Never push OHS down your options list just because the thought of it is scary. It isn’t painful or the recovery doesn’t suck as much as how it appears on the Internet :slight_smile: All the best! :+1:

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Glad to know you are doing good. Wish you a very quick recovery!

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Hello Elnino,
My experience might help you get a view on this, but first of all I notice there seems to be great deal of emphasis on ‘choice’ in these posts. Like folks are deciding what brand of car to buy. Only a car is just a car. Sometimes not having to make a choice on something so personally fraught and so entirely dependent on others’ expertise and knowledge gained only through years of training and experience can make life a lot easier and, arguably, even improve outcomes. As you will have to do sooner or later you will be placing your trust in the skill of another person. Being riven with uncertainty about a choice you are apparently being forced to make on top of the condition itself can only be a bad situation made worse. There is a danger that the more you ask, the more opinions you will get.

I’m 53. In February 2017 I had a cryptogenic stroke which means there were no warning signs and no obvious cause. I am and have been since I was a teenager, a competitive runner and cyclist, so to describe what happened to me as a shock would be an understatement. Following a week of hospitalisation and a series of tests and scans, the consultants discovered I had one large ASD as well as a PFO (patent foramen ovale) and multiple small perforations through my heart’s septum.

While I was in hospital they also discovered that my life-long habit of fainting whenever I received an injection or medical procedure caused a separate - probably related - heart defect to reveal itself. In moments of high stress or pain it would slow to a stop. Great. Watching her partner receive CPR on a stroke ward on top of everything else is not something she tells me she wants to relive any time soon. The result of this unexpected distraction was that while I was in hospital being treated for the stroke, I got a pacemaker installed for good measure.

So back to the ASD(s). In September 2017 in a four hour procedure I had the whole lot closed using a single large Amplatzer device. Usually the procedure is expected to take up to two hours, but according to the report of the procedure I received a week later, things were “extremely complex” due to the nature, number and position of the ASDs and the PFO. The procedure had to be restarted and a second access in my left groin was opened.

The point to all this is that during the procedure there was inevitably some concern about the outcome. At first a decision was made to use two smaller devices, but this proved impossible so the procedure was begun again using a single large device. I, of course, had no choice in this. While unconscious I was relying entirely on the skill, judgement expertise and professionalism of the two doctors. Whatever I might have decided had I been given the choice before the procedure very quickly became irrelevant.

That was all 15 months ago. I have had three scans since then to check the device is still where it should be and the heart tissue is growing over it properly. On all three scans the results have been entirely positive.

One month after the procedure I was out running and cycling again and within three months, having been assured by my consultant this was perfectly safe (always check!) I was taking my heart rate back up to maximum during short interval sessions (again, I was relying on the knowledge and experience of experts).

So three points here:

  1. Ease back on the choices and opinions. You may never find a definitive answer, only more to worry about.

  2. Ultimately I had no choice (UK NHS). My condition was quite complex, but the procedure was performed by two world-class specialists (UK NHS) and the outcome has so far been entirely successful. I have been told that the procedure has not only reduced my chance of having another stroke, but has probably, all other things being equal, reduced below the national average, my chance of getting another one.

  3. I consider myself extremely fortunate, as you and many of the people here should. Not only did I survive a stroke unscathed, but, ironically, it has revealed for me a condition which otherwise would probably have killed me sooner rather than later.