PFO Closure - Open Heart or Transcatheter

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lthree5
New Member


Date Joined Dec 2005
Total Posts : 11
   Posted 12/7/2005 9:50 AM (GMT -7)   
31 yr old female
3 TIA's and 1 stroke in past 9 months
Treatment up until 3 weeks ago was for suspected neurological Lyme Disease
 
PFO and Atrial Septum Aneurysm found 11/19
 
Dr.'s presenting only 2 choices- Coumadin for life or a study where I would be randomized to blood thinner or device. 
 
Another person with this same problem had open heart and suggests I look for further opinions and consider open heart.
 
Does anyone have the device?  For how long?  Any problems?
 
Anyone had open heart?  Do they actually cut the heart itself to patch it up? 
 
Pros/cons of one over the other?  At this point I'm thinking open heart is tried and true.  There are a lot of unknowns with the device but folks over in Europe have had it for 10 years.  Also, going into the study there's only a 50% chance I'll get the device, otherwise, it's blood thinner.  Should I argue for a compassionate case for the device (to get it done outside of the study)?
 
 

tyler's granny
Regular Member


Date Joined Nov 2005
Total Posts : 329
   Posted 12/7/2005 8:37 PM (GMT -7)   
Hi ithree5
 
Sorry to hear of all you are going through.I am not sure if you are talking about the same thing i had done but i will try to explain to you what i had done,
 
What i had done in june of this year is called a Amplatzer Occluder.What they basily did was go through my groin and inplanted a device to block a small hole i had in my heart,usually they don't put to sleep for this but i was so nevous that they did.I think it took about 1hour and a half not really sure,I was in the hospital for 3 days.I had to take plavix for 3 months and a full asprin,I went in for my re-check up in septumber and i was told i could stop the plavix and only have to take 81mg of asprin.i am going to my heart doctor this month for my reg check-up.I have other health problem fibro/chronic pain and just had surgery on my neck 2 fusion,so my pain level is very high right now.
 
I was told all is ok and my last echo came back ok, so i guess everything is ok,and i have had no problem with the divice[knock wood] I guess everyone is different as i was lucky they didn't have to open me up.I know it is a very scary thing and i do wish you all the best and know my prayers and thoughts are with you.and if you have any questions i will be more then happy to help out any way i can,I might not know the answers but i will do my best to help you look for them,best of luck and just know i am here if you need  anything
 
Take care
tyler's granny

lthree5
New Member


Date Joined Dec 2005
Total Posts : 11
   Posted 12/8/2005 6:40 AM (GMT -7)   
Yes! This is exactly what they're proposing...an Amplatzer PFO Occluder. My nervousness is because I have an atrial septum aneurysm near the PFO hole so it's really flimsy in there. I'm worried the device will get loose. I worry about the device but I think I'm at the point where I'll go with the device and if something goes wrong they will then open me up and fix it. So, my theory is I'll start with the least invasive and hope not to have to have the invasive. Thank you for messaging, it's nice to hear from someone who actually has an Amplatzer. Take care as well! Thanks!

tyler's granny
Regular Member


Date Joined Nov 2005
Total Posts : 329
   Posted 12/8/2005 10:33 AM (GMT -7)   
Hi ithree
 
Glad i was able to be of some help,and i can understand your worry,i had never heard of this i had it done,and i was so very nervous,I am not sure when you are planning on having this done,but maybe you could ask if it is possiable to put you to sleep for this,if being awake bothers you,as it did me,,also from the way it was explain to me is that after 3 months the device is cover over with scar tissue and that protects it,and in most cases all you need to do is go for check ups every 3 months at first then you only go every year if all is ok. please know my thoughts are with you and please keep me inform.
 
Take care
Tyler's granny

Garden Girl
New Member


Date Joined Dec 2006
Total Posts : 1
   Posted 12/13/2006 6:46 PM (GMT -7)   
I know that it has been a while since anyone has posted on PFO's, but I'm curious to know if anyone has had the closure procedure particularily in regards to the cardioseal closure. I had the device implanted almost two months ago and am still having severe chest pains and soreness throughout my left arm and neck areas. Is this normal? And if so for how long?? Help, I'm ready to get on with my life and everything I read says that I should be feeling better by now.

Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 12/14/2006 7:46 PM (GMT -7)   
Hi...I was just diagnosed with a PFO. Anyone here with a PFO and vision problems?

Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 12/14/2006 7:47 PM (GMT -7)   
TYLERS GRANNY.......HOW BIG WAS YOUR PFO?

tyler's granny
Regular Member


Date Joined Nov 2005
Total Posts : 329
   Posted 12/14/2006 9:11 PM (GMT -7)   

HI NEUROGURL

sorry i just read your post.i usually post in chronic pain and i only come here now and then .

In regards to your question the pfo is real tiny about the size of apencil eracer.I had the pfo done last june. in my case the hole was very small .I was told it was best to have it done as it could cause blood to leak and might cause a stroke,so i had it done after my husband and i talked at lenght with my cardio dr,i was in the hospital 5 or 7 days something like that.I was on plavix for 6 months and after that i now only take a 81mg of asprin a day.I do go for echo every 6 months just to be sure everthing is ok and so far so good[KNOCK WOOD}}

I have ddd and so i get the next pain and arm pain now and then but i think it is due to that.as far as the chest pain goes i have not have any big problems with that.

I would say it took me about a good 3 months to really start to get my engery back.and i do have other problems not realated to the pfo or my heart.with me i think it was a good choice and while i will say i was scare and when it came time to have it done i was a mess.they usually dont put you to sleep for that they just sedate you but i was such a nervous wreck my cardio put me to sleep for it.so if you do decide to have it done that is something you can ask your dr if you rather be put to sleep.

Im am not sure if the size of the hole would determined the size of the pfo.ask your cardio as i would not want to give you any infro that is not right.I do know that my carido gave me a dvd to take home and i could see just what they were going to do.

in any case if you have any more question please feel frr to ask and i will be sure to check the heart forum more often,

best of luck to you and whatever you decide to do please know i iwll keep you in my thoughts and prayer's

tyler's granny


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 12/19/2006 3:58 PM (GMT -7)   
Hi Tylers Granny...Im sorry I didn't notice your posted here. thanks so much for your response. So, I am still waiting for my results to find out the size of the hole. I wonder if this is causing all of these neurological symptoms I've been having. What do you think. Is it possible?? Pfo causing neurological symptoms?

Leenie
New Member


Date Joined Dec 2006
Total Posts : 9
   Posted 12/31/2006 5:43 AM (GMT -7)   
Absolutely neurogirl - that is what was happening to me... 10 yrs of serious probs, I changed neurologists, she sent me to a cardiologist and it was a PFO causing the probs all along.

Winifred
New Member


Date Joined Jan 2007
Total Posts : 2
   Posted 2/4/2007 8:37 PM (GMT -7)   
I am three weeks post PFO closure and would like information on what to expect regarding recovery. My PFO was 1 centimeter in diameter about 1/2 inch. Continue to have headaches and hoarseness. Is this normal?

I have also had chest and right arm pain. Is this normal? Not sure what is associated with PFO or fibromyalgia. This pain has been better this week, however, the headache, sore throat and horseness has been worse yesterday and today. Not sure what is normal or when I should notify my cardiologist.

Would like websites to read regarding recovery.

Winifred

els
Veteran Member


Date Joined Oct 2005
Total Posts : 4031
   Posted 2/5/2007 9:35 AM (GMT -7)   

Hello Winifred, Welcome to Healing Well forum we are happy to have you join us here.  I dont know much regarding PFO's as I dont have this disorder of the heart.  I have Sick Sinus Syndrom, Bradycardia (pacemaker implant) and a Ventricular Septal Defect.

I hope other members who have had this procedure will post so you will have some insight as to what you can expect and what others have experianced.  I have pulled up some information on PFO's for you though...the one from Barnes Jewish Hospital has some good information.  They are here in Missouri where I live and they are pretty much up on heart related issues.  I hope you do post again...HW is a great resource for support and information so feel free to come back.  Take care

http://www.emedicine.com/med/topic1766.htm

http://www.clevelandclinic.org/health/health-info/docs/3400/3454.asp?index=11626

http://www.barnesjewish.org/groups/default.asp?Navid=1323

Elisha
Co~Mod: Depression
Moderator: Heart & Cardiovascular Disease
http://www.healingwell.com/donate


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 2/5/2007 10:39 AM (GMT -7)   
HI Guys, I had an echo which showed a small PFO. The doctors don't seem concerned at all for some reason even tho Im having symptoms. They are telling me "oh this is nothing, no big deal , actually very common." Also, I noticed some of you found out the size of your hole. In my echo report it doens't state the size, just that its small. Is there another test that has to be performed to find out the actual size? Like a TEE Echo?? anyone know?

els
Veteran Member


Date Joined Oct 2005
Total Posts : 4031
   Posted 2/8/2007 4:47 AM (GMT -7)   
Hi Neurogurl, some of these members havent been on the forum in a while so I am not sure if you will get a response from them.  I dont know if you can get the actual size of your PFO from a TEE Echo that would be a good question for your doctor.  In my case I have a septal defect which was found first from a bubble study.  It didnt show the size of the hole but when my cardiologist did my Cardiac Cath he was able to see and measure the size of the hole that seperates the right and left ventricles of my heart.  Usually, the Cath is the most reliable test even though it is invasive.

Elisha
Co~Mod: Depression
Moderator: Heart & Cardiovascular Disease
http://www.healingwell.com/donate


jjhuff
New Member


Date Joined Sep 2007
Total Posts : 1
   Posted 9/12/2007 8:40 AM (GMT -7)   
i had a stroke in 2002 and another one  8/6/07 they can find no other reason for this except pfo. I also have vision problems,lightheadedness. nero is giong to send me to see cardio doc about pfo closure. hope it will help.

els
Veteran Member


Date Joined Oct 2005
Total Posts : 4031
   Posted 9/13/2007 5:26 PM (GMT -7)   

Yes they  are pretty common and odd how many people live with them and dont know they actually have one.   Welcome to the forum jjhuff, I hope you find the information and advice here helpful.  Please do feel free to post as often as you like.  The members here are always ready to help out.

Let us know how things go.  Take care


Elisha
Co~Mod: Depression
Moderator: Heart & Cardiovascular Disease
http://www.healingwell.com/donate


mamanuss
Regular Member


Date Joined Sep 2007
Total Posts : 36
   Posted 9/25/2007 6:38 PM (GMT -7)   
I am overwhelmed!!! I have been searching for people who I can share with... people who have had strokes and pfo closures...
I just need to know that what I am experiencing is okay-

I had my stroke in October of '06 and they found a 1" PFO hole in my heart. Praises to God that all the clot killed was my coordination (I never really had any of that anyway) and balance. A little medicine keeps me up-to-speed with my hubby and four kids. I was 29 when it happened.

Someone earlier mentioned that they still have pain in their chest and down their left arm- I am on beta-blockers for mine. No other tests were done. My cardiologist just mentioned that there aren't a whole lot of us out there to know what are normal side effects and what are not. I am just curious to know if anyone else out there is going through the same thing.

Thank you sooooooo much!!!!!

dinby
Regular Member


Date Joined Feb 2007
Total Posts : 87
   Posted 9/30/2007 4:13 PM (GMT -7)   
I have only just seen this after posting a new topic.......... so sorry all of you that are gong through the same as me, but for me it is a relief that i can actually talk to tothers :-)   My hole is over an 1 inch and is facing my lung so blood could go into my lung . i have only just found out the size. apparantley i was born with it but now i am getting complications. i don't want to repeat myself as i have already posted a topic. But i am scared of the procedure.
I do not know any one that has had it done or how they felt. my consultant talks as though it is a walk in the park.............. love to know which park he walks in lol yeah
 
I am pleased i never knew or my life would have been so different, i have rode horses since i was five and still have 2, i love dancing, walking on the beach ( never been able to run or jog unless someone was chasing me lol tongue ) i am very active although i get tired more now i get palpitations but not as bad now i am on antacid tablets ( they work for me!) i get slightly breathless too, but i still work full time and look after a family and my 2 horses.
iam so pleased there are sites like this and maybe some one can help me make the decision to have closure done or not?
 
 

tyler's granny
Regular Member


Date Joined Nov 2005
Total Posts : 329
   Posted 9/30/2007 7:38 PM (GMT -7)   
dinby
 
sorry i dont come here to often and i just saw your post.i had the pfo closer done.i believe it is called amplatzer occluder.where they put a mesh to close the hole in your heart.i had it done in june of 2005.if this is what you are talking about please feel free to ask any questions and i will try to answer them the best i can.
tyler's granny

dinby
Regular Member


Date Joined Feb 2007
Total Posts : 87
   Posted 10/1/2007 1:13 AM (GMT -7)   
Hi, thanks for replying. Yes that is what they want to do to me! i will be asleep for it thank goodness. My consultant said if i have it done my quality of life will improve, but as he said to me i don't know anything to compare it with as i have had this since birth. I am 45 and only recently had all the results back, after many, many different scans. The hole is just under 1inch and he says it needs to be closed because of complications that could set in. But i am scared silly!
What are the side effects of having this done? how will i feel after? wouldnt it be better to leave it alone and go for monitoring?.......... (loads of questions) 

mamanuss
Regular Member


Date Joined Sep 2007
Total Posts : 36
   Posted 10/5/2007 8:58 PM (GMT -7)   

Dinby-

    Get the proceedure done!!! It is far worse to take the chance of a stroke than to have any side effects from a patch. My hole was 1" as well and I had a stroke, that's how they found it. I am 30 with 4 kids and a hubby.

So, like my cardiologist said, there just aren't that many of us out there to know what are normal side effects. As long as we communicate together, and with our docs, it will all be good.

I hope that this helps, I didn't want my post to scare anyone... I just wanted to know if there was anyone else experiencing the same thing.

Please feel free to ask me if you have any questions. I had the proceedure done in Nov of '06.


dinby
Regular Member


Date Joined Feb 2007
Total Posts : 87
   Posted 10/7/2007 3:28 PM (GMT -7)   
hi Mamanuss, i guess there isn't many of us? I don't know about you but i have alreaday have had a few scares, My older sister died of cervical cancer. about a year before she died i also learnt i had CN3 so i had a cone biopsy done. about 3 years after she died i had the same again and another cone biopsy. The thing is i knew then that i was lucky, but now i have this? I know i need it done, but i love life i adore my life. I am a mum to 1 son who is 21 and step mom to 3 others 17, 19, and 22. I work in social care for learning disabilities, and also prompote disabilities in the community. I have 2 horses and 2 german shepards, oh and a wonderful husband who puts up with my tantrums!
He thinks this is nothing and there is nothing to worry about............. i just think it could go wrong.
You sound like me you have a zest for life. maybe you are right. I am due to see my consultant this month and know i need to give him an answer.
Sorry for going on but this is really freaking me out. x    

mamanuss
Regular Member


Date Joined Sep 2007
Total Posts : 36
   Posted 10/8/2007 10:46 AM (GMT -7)   

I think I would have freaked out, too, if I had time to think about it. It wasn't really an option for me. I compare the proceedure to a broken leg surgery and a tubal. It was NOTHING compared to those things. Really, in all honesty, I was up and going within weeks of the proceedure.

I was able to function right after, but I was so nervous to do anything for fear that I would move the patch or worry about my cath holes.

Please don't hestiate to ask me ANY questions about the proceedure or right after!! It sounds like you have a lot to live life for... and have endured so much already!

Please keep in touch and I look forward to hearing what you plan to do.

Many Blessings!!

 


dinby
Regular Member


Date Joined Feb 2007
Total Posts : 87
   Posted 10/11/2007 3:31 PM (GMT -7)   
hi Mamanuss........... thank you again, how many times can i thank you for sharing your thoughts and feelings with me? i sometimes feel silly because i haven't found the strength or guts to acknowledge i need this done, i guess i focus too much on the negative side. i know deep inside that if i don't have it done i will die, but i also knew when i had the cn3 removed if i never had that done i would die. Funny thing is i never hesated with that i just had it done. I beat my self up over this, my husband is constantly on at me to say i will go ahead......... but i make excuses like i am too busy at home or work to go ahead with it ( i am being honest i am too busy! loads to do)
I can't imagine how you felt, you are younger than me your children are younger than mine, you had a stoke and were lucky to come through. You must have been so scared to know that you had a stroke at such a young age. you sound like me you love life and don't take it for granted?
I have 2 heart consultants, i have to see the other one on tuesday ( he is my local one and not the one who wants to do the procedure ) i know i will have to make make my mind up then.............. i also have an interview the next day for a new job that i really want, they know about my medical back ground only cos' i told them............. why does life throw these obsticals in? or do we make them bigger than they are?
Take care Mamanuss ( by the way what does that mean? Dinby is my signiture who is my miniture horse lol little horse with big heart!) x 

mamanuss
Regular Member


Date Joined Sep 2007
Total Posts : 36
   Posted 10/11/2007 8:09 PM (GMT -7)   
"Mamanuss" means mama- and the beginning of my last name- Nuss. That's all- I am not very creative.
I do feel very blessed. I believe, without heaping a bunch on you- that everything we go through was only meant to make our story more exciting and purposeful!
God needs me, and you- to take our survival stories and let people know that there is hope.
It sounds like, to me, that your story is just getting better every day! We all get to choose how it will end at the end of the day.
I take very little for granted now. Neither do my parents, my hubby or most of my kids. I say most because the baby was only 7 months old... but they mostly all remember that day in October.
Keep me posted on how you are feeling!! PLEASE PLEASE PLEASE never feel silly- let's just agree that this is NO FEEL silly post!! HA HA HA!!!
You are doing great, Dinby! Hang in there!
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