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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

Pfo size - tcd and tee

Hello. Is there anyone who did not close the pfo? Can you please tell me how many bubbles passed through in tcd bubble test? Was there any difference in size wuth tcd and tee?

Hi, Barbie

I just want to clarify your questions. What you are wondering is:

1. When people here had their tcd, how many bubbles did their test show got through? (You want to compare theirs with yours?)

2. When people here had both the TCD and the TEE test, did they show a difference in size estimation?

Is that correct? If so, let's see what people can tell you about their test results.

Seenie

PS We're not doctors here, so we cannot interpret test result. We can tell you what ours were though!

Hello. Thanks for your reply. Yes … All that is correct.

Hi,

I had my PFO/ASD hole closed October 2014. Before it was closed when I had my Bubble Study, there were so many bubbles, we could not count them. They just looked like a thousand little fairies on the ultrasound screen. When I had the TEE done next they said my hole was not big enough to warrant closing. I felt like the advice from both tests were conflicting and wasn't sure if I should ask for a 2nd opinion or what I should do. Turns out, when you have a TEE, you are sedated, so you are not able to blow and make pressure for the hole to open. I also had a Transcranial Dopple Study who showed that bubbles were crossing the brain barrier and this was the final okay, that the hole needed to be closed. At the beginning, my doctor was a butthead and basically said, unless I had an ASD, he refused to close the hole, that there wasn't enough information to know if it would be worth closing it or not. Even today there are clinical trials involving adults with holes in their hearts. Anyway, I changed insurance carriers, and only my first Bubble Study was done by Dr. Butthead. The next doctor I saw, said it was up to me if I wanted it closed or not. I could also just play the wait and see game. Since I was having trouble breathing when walking up flights of stairs, and had pain around my heart like bacterial endocarditis, and problems with stamina; I said I wanted to give it a try and close the hole. I'm so glad I did despite the lack of medical knowledge about the success rate of closing the holes. Immediately after the surgery I noticed a dramatic difference in the amount of oxygen I could take in and breathe. It took 1 year for the patch to be completely sealed off, but I noticed a difference right away. I had the Gore Helex Patch put in. I still have difficulty with stamina and am undergoing other kinds of testing, but I have noticed a slight increase in what I am able to do during the day since I had the hole patched up.

I don't believe TCD and TEE are credible enough to just go with those test results. Based on my experience, when the doctor started the surgery to close the hole, he had difficulty locating the hole based on the test results. It turns out the hole was between 2 atriums in a different location then previously thought based on all the tests I had done prior to surgery.

Hope this helps answer the question you posed! :)

gummysplash, I don't know, but I think your experience is probably similar to Barbie's in that it sounds like there are conflicting test results. I'm glad that you finally got a doctor who allowed you to make your own decision. It sounds like it was a good one!

gummysplash said:

Hi,

I had my PFO/ASD hole closed October 2014. Before it was closed when I had my Bubble Study, there were so many bubbles, we could not count them. They just looked like a thousand little fairies on the ultrasound screen. When I had the TEE done next they said my hole was not big enough to warrant closing. I felt like the advice from both tests were conflicting and wasn't sure if I should ask for a 2nd opinion or what I should do. Turns out, when you have a TEE, you are sedated, so you are not able to blow and make pressure for the hole to open. I also had a Transcranial Dopple Study who showed that bubbles were crossing the brain barrier and this was the final okay, that the hole needed to be closed. At the beginning, my doctor was a butthead and basically said, unless I had an ASD, he refused to close the hole, that there wasn't enough information to know if it would be worth closing it or not. Even today there are clinical trials involving adults with holes in their hearts. Anyway, I changed insurance carriers, and only my first Bubble Study was done by Dr. Butthead. The next doctor I saw, said it was up to me if I wanted it closed or not. I could also just play the wait and see game. Since I was having trouble breathing when walking up flights of stairs, and had pain around my heart like bacterial endocarditis, and problems with stamina; I said I wanted to give it a try and close the hole. I'm so glad I did despite the lack of medical knowledge about the success rate of closing the holes. Immediately after the surgery I noticed a dramatic difference in the amount of oxygen I could take in and breathe. It took 1 year for the patch to be completely sealed off, but I noticed a difference right away. I had the Gore Helex Patch put in. I still have difficulty with stamina and am undergoing other kinds of testing, but I have noticed a slight increase in what I am able to do during the day since I had the hole patched up.

I don't believe TCD and TEE are credible enough to just go with those test results. Based on my experience, when the doctor started the surgery to close the hole, he had difficulty locating the hole based on the test results. It turns out the hole was between 2 atriums in a different location then previously thought based on all the tests I had done prior to surgery.

Hope this helps answer the question you posed! :)

Thanks. So you had some heart symptoms. What about palpitations? I do not have any symptoms. Just migraines and occasionally palpitations. I am also scared of these patch devices … How long can you live with it?

Oh gummysplash… How old are you? Are you female? I had some spontaneous microbubbbles with normal breathing and 70 with strain. I guess this is spencers grade three? And was the hole bigger as theydid the caterisation?

I'm a 33 year old female. I had the hole closed at age 32. They didn't give me a "spencers grade 3" or level of the hole. After having it patched up, the doctor told me in mm the size of the hole, which I'm sorry I don't remember. It was between 4 mm and 8. I know it definitely wasn't bigger then that. The cauterization was actually pretty easy. I wouldn't be worried about that part. I had to lay flat for 8 hours afterwards, and for me the most unnerving part was using a bedpan, and one of the times I missed the bedpan, so I got a gown change too. My doctor stitched up the cut in my groin area of my leg, and so it was literally just hanging out in bed flat. Years ago, my mom had a cauterization done to check out her heart in a test, and she had to lay flat with a sandbag that weighted a lot on top of her leg to allow the blood to clot. This must be a bit outdated, because it isn't what was done to me. :) I did have some palpitations before the closure, but they weren't severe. The patch is a forever thing. The only way to take it out is to do open heart surgery. The only thing I had to be careful of in the first year of the patch healing was infection, from a bacterial strain. So I wore a fabric mask that I bought online for the first year. I'm actually still wearing it when I go out in public, but that is due to my immune system being low and I catch everybody's cooties... so not really relevant to having the heart patched up. It worked out really well, and since the heart patch is sealed over with my bodies own cells, my doctor cleared me to run a marathon. lol! More of a joke, since with my other medical issues, running a marathon would only happen if a bear were chasing me. I have had migraines for about 4 years now. A county doctor was the one to suggest the bubble study because some studies have shown that people with a hole in their heart are more prone to having migraines. I don't know how legit that study is or how many people this is true for. I had migraines, before my heart hole closure, and had a few different ones that I had never had before afterwards. But I also learned that migraine patterns and types can change over time. For example right after my closure, I had a 10 minute visual migraine which I've never had before or since. No pain, just saw wiggly lines and it went away. Then about 6 months later, I started getting migraines in the back of my eyes. So my head didn't feel lousy all over, but instead I would just get pain behind the backs of my eyes. If I took migraine medicine, the pain would leave from my eyes and spread all over my head. So naturally I just lived with the eye pain until it went away. I even saw an ophthalmologist just to be sure, and he couldn't find anything wrong with my eyes or the pressure in my eyes. Since then, I have discovered and been diagnosed with menstrual migraines, so I get them the week prior to getting my period. But ironically, this month's cycle I only had 1 mild migraine, and that's it. I did have an iui, so it that's the reason...by golly I need to pay for an iui every month, even if I don't get pregnant successfully. Lol! Some people pay a couple hundred dollars every month just for their migraine medicine, so tentatively that could be mine. lol! Really, as you can tell, you just have to have a sense of humor through out all this medical drama.

For the 1st 6 months after closure, my doctor put me on Plavix, to keep my blood thin and avoid any possible clotting. Just be prepared to buy stock in Dollar Tree fabric bandaids, seriously even opening letters became a disaster. Then I had to use the jigsaw outside cutting out some projects, and knick my knuckle, which took some great leaps and bounds to figure out how to stop the bleeding. lol! Since then my doctor has recommended that I take baby aspirin daily. Which I took faithfully until about 2 months ago. I think this is just a recommendation for nowadays, because even my mom was recommended to take baby aspirin daily, and she doesn't have any major heart problems. I will probably go back to taking it taking it daily if in fact I am really pregnant or depending on what herbs I might want to take in the future to help me conceive. Most medications/herbs have interactions in baby aspirin from what I've read. Anyway, I've detoured from topic. Hope this helps clarify. If not, let me know! The pictures are of my transcranial doppler study that I had as the final "say" before my surgery. I have a video file of it, if that is of interest as well.

1-IMG_07701.jpg (1.19 MB) 2-IMG_0756.jpg (606 KB) 3-IMG_0764.jpg (607 KB)

Thank you gummysplash ... I see that you had tcd, but did you get the saline infusion into your left arm? Did you have any strange symptoms after that? I spoke to one girl, that also had a pfo, 25mm. They did not see it on tte, tee ... only on tcd. And than as they were doing the caterisation they saw that it is 25mm big ... Can you send me a video file? I will wrote you my e mail in pm, ok? So I really think that this holes, pfo's are many times missdiagnosed, because on tte they are not visible althought they are not so small, obvisously. I am scared of putting the amplatzer in and having any heart problems because of that, which I do not have now ... So, it does not help you with your migraines .. yes the types of migraines change ..

Yes, I had the saline infusion in with the swished up bubbles that were pushed into the IV line with a saline syringe. I have a video of it I can try and attach and send to your private email; I will check tomorrow since it is late here.

As for symptoms, yes, and no. It was pretty easy process besides that clamp squishing my head. It has to be snug so that the ultrasound probe could sense and "hear" the bubbles passing through. I had seizures, a lot of them prior to my hole closure. The Dr.'s think they were non-epileptic, though I did have 2 tests with epileptic brain activity. Turns out the brain is a complicated world that isn't totally figured out yet. lol! The more I learned, the more I realized that doctors still don't know much about the brain. Anyway, after the TCD, my head felt lousy--pretty similar to how I felt after any of my seizure episodes. Prior to the closure I had 8-9 seizures a day. Now I just have facial twitching that comes and goes without the seizures unless I overdo my activity level/stress levels. Novocaine at dentist is the only other obvious thing that sets off my seizures as well.

My migraines are a lot less and less intense then before the closure. I had several months where I had daily migraines that never went away even with taking Excedrin ect.

I would highly recommend you look into the Gore Helex device and ask your doctor if it is an option for you. It is safe to have an MRI/CAT scan ect. No worries with the device in. I've not heard a lot about amplatzer, but I know there are a lot of older devices that have failed and people have had a lot of problems with them. I've only heard positive things about the Gore Helex besides my own experiences--which have been good! I would re-do the surgery if I had to make the decision again. I would even go open heart surgery to have it fixed down the road, because of the benefits I've felt from having it done.

And, that's coming from me who's not that big on surgery because I'm sensitive to the good happy drugs--morphine/dilaudid. I coded on them when I was 15 from spine surgery. So Toradol is about the highest strength drug I would go. :)

Yes, I believe it has helped improve my migraines. I don't know 100% guarantee, but I feel better overall more days of a typical month then I used to feel.

Also, I wouldn't consider the device to cause any heart problems. Technically, having a hole is considered a congenital heart defect. I also have mitral valve prolapse with blood regurgitation; so the blood flows backwards when the little "gates" shut. Anyway, since I had the device put in and sealed over with the cells of my body; my mitral valve is hardly even noticeable now on an echocardiogram. They said there is No regurgitation now that I have the device in. I think that just in and of itself is pretty awesome.

I'd definitely recommend you get a 2nd opinion from another heart specialist if you have concerns or unanswered questions about the procedure. I was nervous to have it done, but really it was a walk in the park in comparison to most surgeries.

I will work on uploading that video file in the morning. :)

I hope this helps answer some of your questions or makes any sense. :)



gummysplash said:

Yes, I had the saline infusion in with the swished up bubbles that were pushed into the IV line with a saline syringe. I have a video of it I can try and attach and send to your private email; I will check tomorrow since it is late here.

As for symptoms, yes, and no. It was pretty easy process besides that clamp squishing my head. It has to be snug so that the ultrasound probe could sense and "hear" the bubbles passing through. I had seizures, a lot of them prior to my hole closure. The Dr.'s think they were non-epileptic, though I did have 2 tests with epileptic brain activity. Turns out the brain is a complicated world that isn't totally figured out yet. lol! The more I learned, the more I realized that doctors still don't know much about the brain. Anyway, after the TCD, my head felt lousy--pretty similar to how I felt after any of my seizure episodes. Prior to the closure I had 8-9 seizures a day. Now I just have facial twitching that comes and goes without the seizures unless I overdo my activity level/stress levels. Novocaine at dentist is the only other obvious thing that sets off my seizures as well.

My migraines are a lot less and less intense then before the closure. I had several months where I had daily migraines that never went away even with taking Excedrin ect.

I would highly recommend you look into the Gore Helex device and ask your doctor if it is an option for you. It is safe to have an MRI/CAT scan ect. No worries with the device in. I've not heard a lot about amplatzer, but I know there are a lot of older devices that have failed and people have had a lot of problems with them. I've only heard positive things about the Gore Helex besides my own experiences--which have been good! I would re-do the surgery if I had to make the decision again. I would even go open heart surgery to have it fixed down the road, because of the benefits I've felt from having it done.

And, that's coming from me who's not that big on surgery because I'm sensitive to the good happy drugs--morphine/dilaudid. I coded on them when I was 15 from spine surgery. So Toradol is about the highest strength drug I would go. :)

Yes, I believe it has helped improve my migraines. I don't know 100% guarantee, but I feel better overall more days of a typical month then I used to feel.

Also, I wouldn't consider the device to cause any heart problems. Technically, having a hole is considered a congenital heart defect. I also have mitral valve prolapse with blood regurgitation; so the blood flows backwards when the little "gates" shut. Anyway, since I had the device put in and sealed over with the cells of my body; my mitral valve is hardly even noticeable now on an echocardiogram. They said there is No regurgitation now that I have the device in. I think that just in and of itself is pretty awesome.

I'd definitely recommend you get a 2nd opinion from another heart specialist if you have concerns or unanswered questions about the procedure. I was nervous to have it done, but really it was a walk in the park in comparison to most surgeries.

I will work on uploading that video file in the morning. :)

I hope this helps answer some of your questions or makes any sense. :)

https://youtu.be/SHk0L9M23cA Here is the link to a youtube video I uploaded of my TCD study. It is larger then 5mb, so it would not upload to the link on this discussion board. It was hard to count the number or size of bubbles to compare with TEE. But if you turn up the volume for the video, you can hear the clicks as the bubbles were detected on the monitor.

Hi there, I wanted to give you a response, since I have been living with my amplatzer device for 10 years now. I had 2 TIAs when I was 29 and basically had to get the holes closed, after they finally figured out what was causing them. I had bubble study first and there were lots of bubbles. I felt nothing at all with the bubble study. I have had like 4 in all. I then had a TEE and they found that I had several holes in my atrial septum and a chiari membrane. I was scared, because I did not know much about the procedure. My doctor had only done 12 and he had another doctor perform the procedure with him. I am glad I did it, because I feel I am healthier than I have ever been. It took a couple of years to recover to my full potential, but I had quite a bit of damage including heart wall aneurysm that had happened over time due to the embalance of pressure. I have had 2 children since the procedure, and I am doing great. I hope this helps. Remember, do not be afraid for the Lord our God is with you.

Thanks “scared of erosion”. Can you please tell me, if your fenestrated heart was seen as normal on regular echo? On tte. Only the bubble test revealed a shunt?

It was not seen as normal, because by the time they found it, I had developed and aneurysm of the atrial wall. There were a lot of bubbles that passed during echo with bubble study, and when they did the TEE they saw the size of my PFO, which I can't exactly remember. They were not aware of the multiple fenestrations in the atrial wall until they were in surgery placing the Amplatzer device. I was initially afraid of erosion, because I felt bad for a while, it has been 10 years now, and I feel great! I am so glad I did the surgery. My surgeons are at Vanderbilt in Nashville. Dr. Crenshaw and Dr. Fredi performed the surgery together, because it was not as prevalent then as it is now.