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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

We will are going in on Tuesday for another TEE and possibly ASD closure

My wife had a TEE done in October to determined the size of the asd. Unfortunately the results was not promising. The cardiologist that did the procedure had no clue as to the size and position of the hole. We were scheduled to see another cadiologist who said the previous dr. did not have much experience and from his observation the repairs was not possible and we may need a open heart surgery.

That is why they set up a new TEE with another cadiologist. This time the only difference from the previous she will be put to sleep. If the hole is with in range of the device the repair will be done. Otherwise they will schedule an open heart surgery in 3 months.

Anyone with similar experience?

Hi there. I had a TEE in July and was told by one of the nations’ top surgeons, Dr. Lamelas in Miami, that i needed minimally invasive open heart surgery. I went to see a very experienced interventionalist and he said he would be able to close it through cardiac cath. He did another TEE because when he tried the 1st time the hole was larger than the 1st TEE showed. The 2nd day we went for round 2 and he was able to close it using an 30mm Amplatzar device …i believe the largest is 38mm. Get a second and third opinion before surgery. Ask about minimally invasive surgery and see other surgeons. I will be happy to answer any questions u have. I will pray for you.

Is there any way for her to see an Adult Congential Heart doctor? You can to the Adult Congential Heart Association website and locate a clinic in your area. I have been dealing with my asd for 38 years and have found a HUGE difference between regular adult cardiologist and Congential cardiologist. I would be leary accepting any advice from a regular cardiologist unless he has dealt with congential defects quite a bit.
On another note, most ASDs can be repaired with a catheterization procedure. Mine was very large and higher than usual and they still closed it with the gore helex device. Please keep us posted!

Absolutely go to a medical center where they have a highly experienced Interventional Cardiology Dept!! What city/state are you in?

Hi…I am from India. 7 years back my ASD of size 28 mm was repaired with Amplatzer occluder…of 34 mm size…I suppose most ASD s with good rims can be repaired by catheterization …All the best…



Maydelline said:
Hi there. I had a TEE in July and was told by one of the nations' top surgeons, Dr. Lamelas in Miami, that i needed minimally invasive open heart surgery. I went to see a very experienced interventionalist and he said he would be able to close it through cardiac cath. He did another TEE because when he tried the 1st time the hole was larger than the 1st TEE showed. The 2nd day we went for round 2 and he was able to close it using an 30mm Amplatzar device .....i believe the largest is 38mm. Get a second and third opinion before surgery. Ask about minimally invasive surgery and see other surgeons. I will be happy to answer any questions u have. I will pray for you.
The procedure is minimally invasive. This will be a difficult cardiologist that is associated with ACHA.


GAmomof3 said:
Is there any way for her to see an Adult Congential Heart doctor? You can to the Adult Congential Heart Association website and locate a clinic in your area. I have been dealing with my asd for 38 years and have found a HUGE difference between regular adult cardiologist and Congential cardiologist. I would be leary accepting any advice from a regular cardiologist unless he has dealt with congential defects quite a bit.
On another note, most ASDs can be repaired with a catheterization procedure. Mine was very large and higher than usual and they still closed it with the gore helex device. Please keep us posted!
Thanks. They are going to redo the TEE to confirm the size, then the cartherization to close the hole. Her cadiologist is more optimistic that the device will be use from the ACHA dr. But it was just another member on the team blowing things off.


Janie said:

Absolutely go to a medical center where they have a highly experienced Interventional Cardiology Dept!! What city/state are you in?

We are in Los Angeles,CA. We go to Kaise.


RAHULJ said:
Hi...I am from India. 7 years back my ASD of size 28 mm was repaired with Amplatzer occluder...of 34 mm size...I suppose most ASD s with good rims can be repaired by catheterization ...All the best..
Thanks.

Greetings Geno1586,
Not all doctors are created equal. Don’t feel shy to ask about the doctors’ experience. You and you wife have every right. It is her body, not their’s. You have to live with the treatment, not them. Experience is the key to quality care. As a group, we are living longer, and regular cardiologists are unprepared for adults with ASDs. It is unusual for a doctor to admit another doctor didn’t have the experience. TEEs are the ultimate test for the heart’s condition in response to congenital heart defect and to find out what the problem is.
My TEE found a smaller hole but by heart catheterization and Amplatzer Septal Occluder,
it was bigger and misshaped. My cardiologist wanted to do his own TEE so he knew what he was getting into before he fixed the ASD. I had IV sedation at the start of the procedure(TEE) but only for approx. 35-40 mins. I was asleep! That was my second TEE but mine were 2 years apart.
I used a interventional cardiologist as he was the only one in my area that plugged holes in the heart. Yes I asked him! If he had been unsuccessful I would have had to have open heart surgery(OHS) and go to another area. Then I would definitely insisted on a adult congenital cardiologist. I had a good rim, the plug (like an overcoat button) needs some atrial septal wall to attach to. That is what they call the rim. There are different types of plugs available and the doctors’ training and patient can make that decision. All of us have been thru different treatments so please keep everyone posted.
Thanks,
Linda



Linda Arsenault Pitzo said:
Greetings Geno1586,
Not all doctors are created equal. Don't feel shy to ask about the doctors' experience. You and you wife have every right. It is her body, not their's. You have to live with the treatment, not them. Experience is the key to quality care. As a group, we are living longer, and regular cardiologists are unprepared for adults with ASDs. It is unusual for a doctor to admit another doctor didn't have the experience. TEEs are the ultimate test for the heart's condition in response to congenital heart defect and to find out what the problem is.
My TEE found a smaller hole but by heart catheterization and Amplatzer Septal Occluder,
it was bigger and misshaped. My cardiologist wanted to do his own TEE so he knew what he was getting into before he fixed the ASD. I had IV sedation at the start of the procedure(TEE) but only for approx. 35-40 mins. I was asleep! That was my second TEE but mine were 2 years apart.
I used a interventional cardiologist as he was the only one in my area that plugged holes in the heart. Yes I asked him! If he had been unsuccessful I would have had to have open heart surgery(OHS) and go to another area. Then I would definitely insisted on a adult congenital cardiologist. I had a good rim, the plug (like an overcoat button) needs some atrial septal wall to attach to. That is what they call the rim. There are different types of plugs available and the doctors' training and patient can make that decision. All of us have been thru different treatments so please keep everyone posted.
Thanks,
Linda
We are at the hospital, be leaving in 30min. Unfortunately we did not get our wish with the device. We were told that the hole was too large to use the device. The next option would be to schedule the open heart surgery to close the hole.

Hello my name is Dave… im new here… my sister is set to have open heart the 15th of this month… her hole is 40 mm… you mentioned something about minimally invasive surgery.:… I’ve never heard of that… what exactly is that?? I feel like I’m more worried of her surgery than she is!!! Any help is appreciated!! Thank you.: