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Old 02-10-2005, 06:38 PM   #1
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Question Anyone Have A Hole In Their Heart?

My husband was recently diagnosed with having a stroke. He's 34. He has been going to the doctor to find out why he has this pain in his face. Right side going up his gums. Actually, it started with the dentist thinking it was a gum thing, went to a GP, then to a sinus guy, then to a neurologist. The Neuro did an MRI and found brain damage. We can directly relate that to an incident two years ago but we just found out about it in August. We are very fortunate that the stroke he had caused no problems. Now he just uses that as an excuse, "I have brain damage ya know".

The Neuro had us go to the hospital where they put a camera down his throat and took pictures of the back of his heart. They found a really small hole in his heart. That cardiologist didn't feel it needed to be fixed because it was soooo small. From there we were sent to a hematologist. My husband is now on cumadin forever. The cardiologist there also said that they won't fix the hole unless he has another stroke. YOU HAVE GOT TO BE KIDDING ME??!! Yeah, lets wait till the next one paralizes him and our life as we know it is over. He is very active. We drag race a pro-stock car, he loves to hunt and fish, we have to labs and live on a pond so we are out running with them all the time on the four wheeler etc. Live would definately be over.

I have this fear of him having another one. I don't think people in my life really realize how much I think about this. I envision me pushing my husband in a wheelchair or me being alone. I am 33 and he is 34. Am I crazy? Are these natural thoughts? I keep hoping that as time passes these thoughts will get better. I can hardly talk to anyone about these feelings cuz I start to cry. It's so scary for me.

Sorry for the long post.

Thanks for listening. Any advise on the hole in the heart would be great.

Stacia

 
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Old 02-11-2005, 02:15 PM   #2
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Re: Anyone Have A Hole In Their Heart?

I know it's hard not to, but try not to obsess on things going horribly wrong. I am 40 and last year (at 39), I had a small stroke that left me with right-sided weakness. Like your husband , they detected a PFO (hole in the heart). I had many TIA's after that, and they decided to close the hole with an Amplatzer Device. I am having the surgery in 2 weeks. I too am on thinners and even after the operation, I will have to remain on them for life.

The procedure should greatly reduce the risk of further stroke.... as a single mum, I need that reassurance. The procedure is fairly simple although I am anxious!! At the end of the day though, we can only be guided by our Doctors. If you aren't content with your current one, get a second opinion.

Good luck and keep us posted.

 
Old 02-11-2005, 03:13 PM   #3
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Re: Anyone Have A Hole In Their Heart?

Thanks for the words of encouragement. I have heard that the surgery is very non-invasive. I understand your anxiousness but I am sure that it will all be fine. Two docs told us that they wouldn't fix it unless he has another one. I just have a hard time accepting that for an answer.

I'm not going to say good luck to you on the surgery cuz you don't need it. It will go fine. I know it will. If the surgery was real bad I wouldn't want my husband to have it.

Take care and let me know how it all goes for you.

Thanks again. Take care of yourself, those babies need you.

Stacia

by the way ... what does PFO stand for?

Last edited by Stacia; 02-11-2005 at 03:15 PM.

 
Old 02-12-2005, 02:11 PM   #4
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Re: Anyone Have A Hole In Their Heart?

Thanks for your kind words! PFO stands for Patent Foramen Ovale. Technically it isn't a hole, rather as the surgeon describes it, 2 flaps that should be joined but are instead open, allowing clots to develop along their length.

I hope that helps a little, and you get the answers you seek for your hubby.

 
Old 02-17-2005, 08:34 AM   #5
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Re: Anyone Have A Hole In Their Heart?

I have a pfo as well as an aneurysm of the septum. I am 26...they do not want to close mine either. I have not had a stroke though. I am on daily aspirin.

I am now worried though about taking birth control pills. I know they say not to when you have a pfo because the risk of blood clots. But I need to protect myself from pregnancy. I do not want anymore children. I have asked my gyno. doctor about other methods and he says the pill is my best bet. I was considering an IUD... but he says no. He said as long as I take my aspirin everyday I should be fine.

What do you all think I should do?? What would you do in this situation???

 
Old 02-18-2005, 05:38 AM   #6
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Re: Anyone Have A Hole In Their Heart?

Quote:
Originally Posted by sjpage
I agree with others who have said to try to just enjoy life (although I know its hard). I think the reason that they probably do not want to "close your holes" is because you are functional and well, and the surgery could compromise that and potentially leave you with more disability. There is also always the possibility, however remote, that you might have another stroke during surgery since they have to take you off of blood thinners for thius type of surgery to reduce bleeding.

With regard to the birth control decision, that's a tough one. I'd have the guy use a condom though...birth control pills and the like are certainly effective but they also carry with them a risk of vascular disease. Why mess with that?!
Yes but condoms are not that effective...there is sooo much that could go wrong...and it scares me. I know if I take the pill and something goes wrong with using a condom at least I will be safe. I had horrible problems when I was pregnant and they recommended me not to get pregnant again. But then I worry about taking the pill because the risk of blood clots...and with the pfo...that could mean a stroke if I do get a blood clot.
WHAT DO I DO????? SOOOOO CONFUSED

 
Old 02-18-2005, 03:09 PM   #7
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Re: Anyone Have A Hole In Their Heart?

Definitely get off the Pill! Since my stroke in April 2004, I have had to cease using it. I now have a diaphragm. It only needs to be used on the days of the month that are "dangerous" and it has worked for me! I have had my family and do not want another pregnancy and I agree condoms aren't often the contraceptive of choice. A diaphragm is just another option to consider.

Hope that helps. All the best.

 
Old 02-20-2005, 11:12 AM   #8
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Re: Anyone Have A Hole In Their Heart?

Quote:
Originally Posted by sjpage
I agree with others who have said to try to just enjoy life (although I know its hard). I think the reason that they probably do not want to "close your holes" is because you are functional and well, and the surgery could compromise that and potentially leave you with more disability. There is also always the possibility, however remote, that you might have another stroke during surgery since they have to take you off of blood thinners for thius type of surgery to reduce bleeding.

With regard to the birth control decision, that's a tough one. I'd have the guy use a condom though...birth control pills and the like are certainly effective but they also carry with them a risk of vascular disease. Why mess with that?!
THANK YOU! THANK YOU! THANK YOU! Your words for some strange reason have given me some peace. I get so upset with these docs because they really don't tell you much. I know he was checked for all kinds of blood disorders that cause clotting but no doc actually told me a diagnoses. I recently went through that myself with a diagnosis of Hypothyroidism. The docs again told me nothing. Here's some drugs and we'll see you in two months. I didn't even know where my thyroid was.

These boards have been a great source of information to me. I've have learned some much here. I wish the docs would have just told me what you just told me. Then it would all make sense.

As far as birth control - I've been married for 8.5 years and off of birth control for 8 of those years. My husband and I use the "withdrawl" method. Seems to work for us, or something is wrong with one of us. Who knows.

Good luck to you on that BC decision.

Last edited by Stacia; 02-27-2005 at 09:06 PM.

 
Old 02-22-2005, 01:35 PM   #9
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Re: Anyone Have A Hole In Their Heart?

Hi Gals,
Here is a brief description of a PFO:

Background: Patent foramen ovale is an anatomical interatrial communication with potential for right-to-left shunt. Foramen ovale has been known since the time of Galen. In 1564, Leonardi Botali, an Italian surgeon, was the first to describe the presence of foramen ovale at birth. However, the function of foramen ovale in utero was not known at that time. In 1877, Cohnheim described paradoxical embolism in relation to patent foramen ovale.

Pathophysiology: Patent foramen ovale is a flaplike opening between the atrial septa primum and secundum at the location of the fossa ovalis that persists after age 1 year. In utero, the foramen ovale serves as a physiologic conduit for right-to-left shunting. Once the pulmonary circulation is established after birth, left atrial pressure increases, allowing functional closure of the foramen ovale. This is followed by anatomical closure of the septum primum and septum secundum by the age of 1 year.

The Mayo Clinic autopsy study revealed that the size of a patent foramen ovale increases from a mean of 3.4 mm in the first decade to 5.8 mm in the 10th decade of life, as the valve of fossa ovalis stretches with age.

With increasing evidence that patent foramen ovale is the culprit in paradoxical embolic events, the relative importance of the anomaly is being reevaluated. James Lock, MD, has postulated that patent foramen ovale anatomy results in a cul-de-sac between the septa primum and secundum, predisposing individuals to hemostasis and clot formation. Any conditions that increase right atrial pressure more than left atrial pressure can induce paradoxical flow and may result in an embolic event.

This reasoning has greatly altered the previous conception of patent foramen ovale and is changing current management of the condition.

Frequency:

* In the US: Patent foramen ovale is detected in 10-15% of the population by contrast transthoracic echocardiography. Autopsy studies show 27% prevalence of probe-patent foramen ovale. This difference is probably due to the ability to directly visualize patent foramen ovale on autopsy study, while contrast echocardiography relies on detection of secondary physiologic phenomena.

Thus you can see, that when you got that first slap on the butt at birth, and you began to breath*your heart and lungs began to function, the cord was cut and the PFO was then allowed to go into retirement and with luck, CLOSE.

PS. On the PILL issue, I monitor another Stroke site where strokes and cholesterol and often discussed and the bottom line being a number of ladies have developed problems while on the pill, and wishing they had had the ole tubes tied so the pill prevention method could have been avoided all together.

Good luck ladies.

Jim

 
Old 03-25-2005, 07:09 AM   #10
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Re: Anyone Have A Hole In Their Heart?

Quote:
Originally Posted by Stacia
My husband was recently diagnosed with having a stroke. He's 34. He has been going to the doctor to find out why he has this pain in his face. Right side going up his gums. Actually, it started with the dentist thinking it was a gum thing, went to a GP, then to a sinus guy, then to a neurologist. The Neuro did an MRI and found brain damage. We can directly relate that to an incident two years ago but we just found out about it in August. We are very fortunate that the stroke he had caused no problems. Now he just uses that as an excuse, "I have brain damage ya know".

The Neuro had us go to the hospital where they put a camera down his throat and took pictures of the back of his heart. They found a really small hole in his heart. That cardiologist didn't feel it needed to be fixed because it was soooo small. From there we were sent to a hematologist. My husband is now on cumadin forever. The cardiologist there also said that they won't fix the hole unless he has another stroke. YOU HAVE GOT TO BE KIDDING ME??!! Yeah, lets wait till the next one paralizes him and our life as we know it is over. He is very active. We drag race a pro-stock car, he loves to hunt and fish, we have to labs and live on a pond so we are out running with them all the time on the four wheeler etc. Live would definately be over.

I have this fear of him having another one. I don't think people in my life really realize how much I think about this. I envision me pushing my husband in a wheelchair or me being alone. I am 33 and he is 34. Am I crazy? Are these natural thoughts? I keep hoping that as time passes these thoughts will get better. I can hardly talk to anyone about these feelings cuz I start to cry. It's so scary for me.

Sorry for the long post.

Thanks for listening. Any advise on the hole in the heart would be great.

Stacia

 
Old 03-25-2005, 07:21 AM   #11
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Smile Re: Anyone Have A Hole In Their Heart?

I had a stroke 16 years ago which left me with 1/4 vision loss, and some temporary memory problems. Immediatly after and for the next 16 years I developed migraine symptoms without the headaches. 2 months ago I was bicycling(I do this competitively, and was doing this when I suffered my initial stroke), and had more stroke symptoms (difficulty understanding language). My new doctor recommended to be checked for the hole in my heart. I do have it and he says yes 100% get it patched. I hope to have this done asap, and hope I can keep my fitness and compete in high level bicycle races. I cant believe his doctor wouldnt want him to patch it. I am eagerly awaiting a call from my doctor to get this ball rolling. You guys should go to a specialist if you havent already. I live in a town which has some strong heart hospitals/programs. Good luck.

 
Old 03-25-2005, 07:46 AM   #12
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Re: Anyone Have A Hole In Their Heart?

Gosh, I hope I don't screw this up again. I tried to reply but think I just reposted your message. I am 36, had a stroke when I was 19(perm. partial vision loss) and suffered migraine symptoms(minus headache) ever since. Had another more severe episode recently, went to do current tests and found I too have this hole. I want to patch mine, my doctor says yes immediately. Looks like it will be done next week. You should have a second opinion. I cant believe your doctor is questioning this.

 
Old 03-25-2005, 03:58 PM   #13
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Re: Anyone Have A Hole In Their Heart?

2 weeks ago , on the day I was being admitted to hospital to have the Amplatzer device put in, my Cariologist called to say he DIDN'T want me to have the surgery. They repeated the transesophageal echo and decided the risk outweighed the benefit. Go figure! I am going to see a new Neurologist in 4 weeks and see if I can get closure on this whole issue. I have different opinions from Neurologists and Cardiologists and no definitive opinions from anyone.

All the best.

 
Old 04-02-2005, 09:54 PM   #14
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Re: Anyone Have A Hole In Their Heart?

Joe-
I posted my story on another thread, but I wanted to let you know that I just had the surgery to close my PFO this past Tuesday, and it was fine.
I think the risk of another embolic event is far worse than the risk of repairing the hole. Please check out my story, and let me know if you have any questions about the procedure/recovery, etc... I'd love to help!

And... about taking birth control. I would definitely NOT take it if you have a PFO OR if you get migraines with visual disturbances. Both can increase your risk for stroke, and if you add the pill... that would make your risk even greater. I was on the pill when I had my TIA, and then later found that I had a PFO. I read a study recently that people who have migraines with visual problems are 3 times more likely to suffer a stroke. So, I would recommend no birth control, don't smoke, control your weight and blood pressure, and get good exercise.
I hope that helps!

 
Old 04-08-2005, 10:29 AM   #15
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Re: Anyone Have A Hole In Their Heart?

Quote:
Originally Posted by joe m
Gosh, I hope I don't screw this up again. I tried to reply but think I just reposted your message. I am 36, had a stroke when I was 19(perm. partial vision loss) and suffered migraine symptoms(minus headache) ever since. Had another more severe episode recently, went to do current tests and found I too have this hole. I want to patch mine, my doctor says yes immediately. Looks like it will be done next week. You should have a second opinion. I cant believe your doctor is questioning this.
Thank you for the response. Actually, we have had more than one opinion. At some point you have to accept what you've been told. I sopose we could keep getting opinions until someone does what I want, but there must be a reason. When they found the hole the doc said it was so small he almost missed it. It's encourageing to know that you had yours so young and are relatively doing fine. Are you on a blood thinner? Another question, my husband gets hot flashes on occasion. Do you ever get those?

Thanks
Stacia

 
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