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Avatar universal

Should I get my ASD repaired?

I am a 21 year old female and I recently found out that I have a 1 cm hole in the heart between the right and left atrium. Little bit of shunting.  Right atrium, RV are midly dilated.  The only reason I went to get an echo cardiogram was because I have been feeling like I can't breathe randomly and have major anxiety since January.  Before my anxiety started I never had any of these symptoms. I'm really scared now because I don't know if this is a huge problem.  I can exercise fine without being out of breath but I'm scared if my hole will get bigger. I heard about repairing the hole with an umbrella like device thru a vein in the leg, but all surgeries have their risks.. such as rejection and infection and stroke, etc.
1. will the hole get bigger if I don't do anything about it?
2. will I get problems with my lungs and heart in the future?
3. are amplatzer occluders safe..
4. can I keep exercising like I do?
24 Responses
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Avatar universal
I am 20 year old male and was diagnosed I diagnosed with a hole of 6mm during the same age after I had some serious breathing difficulty late in the night. My blood pressure at that time was 170/110. The Cardiologist said that its not big and will require no surgery but will only need a 2-D or 3-D echo test every 2-3 years.
I dont understand how my pediatrician wasnt able to detect it even though I went to him for about 15 years for my checkups and during illness.
Did the hole developed later on during my life? Should I get operated ? Will it increase in size as I grow older?
Helpful - 1
Avatar universal
I am 20 year old male and was diagnosed I diagnosed with a hole of 6mm during the same age after I had some serious breathing difficulty late in the night. My blood pressure at that time was 170/110. The Cardiologist said that its not big and will require no surgery but will only need a 2-D or 3-D echo test every 2-3 years.
I dont understand how my pediatrician wasnt able to detect it even though I went to him for about 15 years for my checkups and during illness.
Did the hole developed later on during my life? Should I get operated ? Will it increase in size as I grow older?
Helpful - 1
Avatar universal
I am 64 years old and was told before Christmas 2013 that I have a 2.4cm hole between the left and right atrium. I had a transesophigal echocardiogram which showed that there was very little tissue for the device to attach so my Cardeologist ordered a 3D transesophigal echocardiogram which showed that the hole was a whopping 3cm and the device through the groin would not be possible due to the lack of tissue on one side. I'm  really concerned about the recovery time because at present I walk around 4 to 5 k's every morning and would like to be able to do it ASAP after the open heart surgery. I'm also concerned about what I can actually do after the operation because I became a grandmother for the first time 8 weeks ago and love him to bits, I would love to know how long it will be before I can hold him or pick him up after surgery.
Helpful - 1
Avatar universal
I am 64 years old and was told before Christmas 2013 that I have a 2.4cm hole between the left and right atrium. I had a transesophigal echocardiogram which showed that there was very little tissue for the device to attach so my Cardeologist ordered a 3D transesophigal echocardiogram which showed that the hole was a whopping 3cm and the device through the groin would not be possible due to the lack of tissue on one side. I'm  really concerned about the recovery time because at present I walk around 4 to 5 k's every morning and would like to be able to do it ASAP after the open heart surgery. I'm also concerned about what I can actually do after the operation because I became a grandmother for the first time 8 weeks ago and love him to bits, I would love to know how long it will be before I can hold him or pick him up after surgery.
Helpful - 1
Avatar universal
Hi, I am 56 yrs and had a 3 cm hole closed last Sept.  using device through groin into heart.  The right side of my heart is already back to normal size  and I can feel the benefit of greater stamina.  For years if I got overtired  it would lead to throat or chest infection and already if I get tired I rest and am quick to recover.  The procedure was effortless and recovery was fairly quick.  I am now cycling and walking with ease.  It is so wonderful to know that as I get older my stamina will feel stronger to me.  Wishing you the very best for your procedure.  I am so grateful for the care and attention I recieved from all the medical staff.
Helpful - 1
Avatar universal
I would have it closed asap.

Its pretty easy procedure and most patients tolerate it well.

Ignoring it may end up with pah or stroke.

Better be safe than sorry.
Helpful - 0
11548417 tn?1506080564
It is an option that you should really consider. I read a lot of positive stories about the procedure, with patients ranging from very young till 80 years and sizes up to 40mm.
I do not exactly know if the procedure has its negative aspects. I find almost only very positive stories.
i.e.:
http://www.rch.org.au/cardiology/parent_info/Closure_of_Atrial_Sepral_Defect_with_Amplatzer_device_Adult/

Have an open discussion with your doctor about the pros and cons for your particular case.
Good luck!
Helpful - 0
Avatar universal
The are more common in babies than adults.  You are born with them and most times the will fully close within the first year.  I would consult with a Doctor.  
Helpful - 0
Avatar universal
I am a 28 year old female and on a routine check up found out that I have a 20mm ASD. My cardiologists are recommending open heart surgery because of the size but on these posts I see that numerous people had an amplatzer device closure with the same size or larger. Is this a better option as opposed to the more invasive open heart surgery? I just want to make the best decision at my age. Thanks
Helpful - 0
Avatar universal
My baby is 2 months and has 4mm ASD, does he need any kind of surgery? or it will be closed by itself?
Helpful - 0
Avatar universal
May I know what is the hospital and the procedure Dr for your closure.
Helpful - 0
Avatar universal
Wow, someone my age. Due to my job, I have had EEG's and physical upon physical and no one has found anything irregular. I went in to have my heart checked after a bout with Lyme Disease and the ultrasound found a small hole in my heart. The doc wants to get a better look since parts of the ultra sound show some tissue. I think I am going to get another ultra sound prior to anything surgical. But it is good to know someone my age had their hole repaired and all is well.
Helpful - 0
Avatar universal
In July 2011 at the age of 24, I had my ASD repaired via amplatzer device. My hole was 28mm and I had been experiencing symptoms for roughly a year and a half, finally resulting in my family doctor to listen to my heart (after being my doctor since the age of 9). A heart murmur was heard in March 2011 and my surgery happened July 15 2011. Lucky to be alive and extremely happy I made the decision I did. I wouldn't be here otherwise. Of course, having the amazing opportunity to have the cardiologist I have definitely helped, as it dropped me into the lap of a heart surgeon I will be forever grateful to.
Helpful - 0
976897 tn?1379167602
That's astonishing, I'm shocked that your heart could pump any blood to your body tissue at all. Great you are doing so well.
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Avatar universal
My defect was 24mm. I had no symptoms until adulthood. I was 29 when it was repaired with the amplatzer, 5 years and two children later I am running 5Ks and beyond!
Helpful - 0
976897 tn?1379167602
are you sure it's 2.8cm? that's pretty big. Most people with ASD less than 9-10mm feel no symptoms, but 28mm? in 33 years you had no symptoms?
It will be up to the Cardiologists if a closure device can be delivered via a catheter and they will carefully weigh your case to look at the risks and best option suited for you. If you are really against open surgery and the cardiologists at your hospital prefer this option, then you can ask for the names and locations of Cardiologists who have a lot more experience using the catheter closure method. Very often a decision is based on experience within the hospital. When I wanted my left artery stented, I went to three different hospitals and no cardiologist felt confident enough. I then went to a training college where professors tend to work, and I was offered the procedure immediately.
Helpful - 0
4 Comments
My ASD was 3cm with no symptoms (including having had three pregnancies) until age 64, when I started to get out of breath.  I was sent for tests and an X-ray showed that my heart was enlarged.  I had further tests including an ultra sound and a TEE procedure (a camera passed down my throat ) to detect the size of the hole. At first it was thought that I would need open heart surgery, but I was directed to a paediatric/adult cardiologist at the Bristol Royal Infirmary.  He felt that it might be possible to close the ASD with the Amplatzer Septal Occuluder catheter procedure, giving me slightly better than an evens chance that it would be satisfactory.  The procedure (using a 4mm Occluder - the largest available)  went without complications and now, at eighty years old, I have suffered no after effects except for a bit of Atrial Flutter which has been dealt with by medication.  I had annual check ups for about three years after the procedure and was then discharged, no longer needing to attend hospital.  I hope that this short resume of my experience will give comfort and reassurance to anyone facing the same diagnosis!
Oops - the device was 4cm NOT 4mm.   Yet another senior moment!
Thanks for sharing! That’s a pretty big hole you had there!
Thank you for sharing your story! Wishing you many, many more healthy years ahead!! You have relieved my worries about having that surgery!
Avatar universal
Lifebuilder, I can't thank you enough for sharing your experience. I am faced with making a decision and my situation is very simular to yours. You have made me feel much more comfortable about possibly having this procedure done.
Helpful - 0
Avatar universal
I am a 33 year old woman. I just found out that I have ASD and the size of the hole is 2.8cm. Has anyone had a size this big? Does the device procedure work or an open heart surgery is a must. My cardiologist is going to have further discussion with a group of cardiologists, but I really want some second opinion as I really want to avoid surgery. Thanks.
Helpful - 0
Avatar universal
Hi buddy hou are you and have got your ASD repaired,,,Im eager to know as im also one of the victims for the same....let us know the progress on your problem
Helpful - 0
Avatar universal
Yes you should get your hole closed. Yes you will have problems in the future with your heart and lungs, maybe not until your  50 or 60. You are lucky to have found it at such a young age and when your heart is only mildly dilated.
I found out at the age of  34yrs and after having had my three children. I was very fit at the time and had no symptoms. In fact, It was during a routing physical before going back to work after my maternity leave where my murmur was found. And it was my first visit with my new family doctor. I had so many doctors listen to my heart and I am still amazed that it went undetected for so long.

My ASD was 20mm. My right atrium and right ventricle was dilated. My doctor said even though I had no symptoms, my heart was showing signs.

I had my ASD closed with the amplatzer device July 28, 2009. I was in and out in one day. My doctor has been doing them for over 11 years and has not had any serious complications. He is highly respected as a cardiologist. At my one month check up my right side dilated had gone down significantly.

I have been cleared to excercise as before. It is a scary feeling to find out you have a hole in your heart. But you are not alone. There are many of us. Make sure you find out what type of ASD you have.Only the secondum ASD can be fixed by device through cathertization.

Please let me know how you are doing and what you have decided.
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Avatar universal
my younger sister was diagnosed with a hole in her hearth when she was born. now at 11 if a deep beath is taken and pressure is applied it becomes louer and a tubula sound is made should it be checked out??? please help.
Helpful - 0
367994 tn?1304953593
Defects were defined as small (> .3 cm to < .6 cm), moderate (≥ .6 cm to < 1.2 cm), or large (≥ 1.2 cm).  ASDs that grew ≥ 2.0 cm were defined as having outgrown transcatheter (through vein o leg ) closure with the occludder device. You are in the high moderate range and two thirds of  ASDs may enlarge with time.. Further development in devices and general availability of devices capable of closing larger ASDs should circumvent this problem. However, I don't know the state-of-art for a transcatheter device.

For an insight, the natural history of ASDs affects the need for and timing of closure either surgically or in the catheterization laboratory. A study showed that 65% of defects increase in diameter over a mean study period of 3.1 years, at a mean rate of 0.8 mm/year. In approximately 30% of patients, the ASD increased in size by 50% or more. There was also the potential for small defects, which were initially believed to be hemodynamically insignificant, to grow into major defects. However, there are inherent limitations in measuring ASDs, as some may have an elliptical shape and the maximum diameter not only may be difficult to interpret but also may change during the cardiac cycle.

Surgical repair of an atrial septal defect in patients over 25 years of age does not fully prevent hemodynamic deterioration and the development of atrial arrhythmias  The risk is right ventricle enlargement and right ventricle functionality...atrial arrhythmia and cardiac failure for adults.

To should cosult your doctor regarding an exercise routine.
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Avatar universal
Correction:  RV was supposed to mean RA
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Avatar universal
The main questions are:   What did your doctor say about it?    Did they detect a murmur and split S2 (second heart sound) which is wider than normal?  

As you probably know; an ASD will cause the S2 to split abnormally if the pressure in the RV is higher than normal (since the hole is an open communication between LV and RV) it increases the RV pressures and hence will increase the size of the RV in response.

However, this doesn't mean you will need intervention.   Intervention depends on many factors; it may be your condition has stabilized.   People with small ASD's live a normal lifespan and typically need no intervention.   Larger defects are recommended to be closed due to possibility of strokes later in life; however this is no different than 10-20% of the normal population with a PFO that is typically not diagnosed.   Most people with PFO/ASD live normal lives.

So it will depend on how the cardiologist feels; and you will have some say in it as well.   I'm not personally sure how a 1cm ASD ranks as far as severity.   To answer your questions:

1.  No it will not get larger
2.  Not likely, Pulmonary Hypertension is rare in ASD but only really in large defects... which yours is not.
3.  I cannot answer this question
4.  Exercise should have no impact or be causing symptoms; but please always ask your doctor these questions before listening to people posting in these forums.

Helpful - 0
1 Comments
I was born with a hole in my heart and when I went for an echo at 8 it was still open which by then its supposed to close I'm 15 know and I have been getting these chest pains for a couple of seconds and feel like I'm not getting enough air somedays and I have been having trouble with swimming cause when a do front crawl its like I'm suffocating myself use I cant breath no matter how much oxygen I breath in, ill be getting my echo again soon but I think the hole in my heart is getting bigger....... I need advice or something
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