Hi I'm 25 year old female, I just learned that I have a pfo after going through
afib and ablations to fix it this past year. My cardiologist that I'm dealing
with for the afib doesn't find it necessary to close it but I have constant
migraines and in all honesty I am not sure he fixed the afib. I just want to
feel better and get my life back. Is it hard to find a doctor to close a pfo?
Basically what are my options?
Thanks in advance for your help,
Renee

Please join us on facebook at PFO Migraine Stroke if you have a PFO and migraine
or stroke.

I used to go by my email nickname violetflame11 when I moderated the migraine
group, but now i'm using my real name, Sol, so please remember that I'm the same
person as Vi :)

xoxoxo

Hey, it's nice to hear from someone in the group.  You have all been quite, I
hope that means that you're all doing well.  I have no complaints, I am still
having PVC's as a result of the surgery, but I am living with them and taking
verapamil to control them.

I hope you are all well!

--- In PFOSupport@yahoogroups.com, "Violet Flame" <violetflame11@...>
wrote:
>thats not true, as i am on blood thinning drugs ( calexin and asprin
daily) and i am 7 months pregnant! so you can. they discovered i was
pregnant and had a PFO within 3 days of each other. so having to sit it
out til i have the baby in 6 weeks time.Then after c section have the
hole closed a week later. my life is crazy at the moment, but trying to
keep my head above water.I'd LOVE to know if there is anyone in or had
a similer experience. I am 33 yrs old.
Lisa
> Hi Mike,
> I can't speak for all the members of the group about why they've had
> their closures, but I have had 2 strokes due to blood clots from my
> PFO, and that is why I had mine closed.  If your wife doesn't want to
> have the surgery, she could always just go on an aspirin a day or a
> blood thinning medication to keep her from having clots. Of course,
if
> you're going to have children, she can't take the blood thinners
while
> pregnant, but you need to discuss that with your doctor.
> Good Luck!
> Solitaire
>

--- In PFOSupport@yahoogroups.com, "Violet Flame" <violetflame11@...>
wrote:
>
> Hi Mike,
> I can't speak for all the members of the group about why they've had
> their closures, but I have had 2 strokes due to blood clots from my
> PFO, and that is why I had mine closed.  If your wife doesn't want to
> have the surgery, she could always just go on an aspirin a day or a
> blood thinning medication to keep her from having clots. Of course,
if
> you're going to have children, she can't take the blood thinners
while
> pregnant, but you need to discuss that with your doctor.
> Good Luck!
> Solitaire
>

I totally agree that you need to have more than one opinion... I, too,
have learned from my doctors that if it's large enough and poses enough
risk, it's work having done (mine is small, I haven't had it closed).
However, it's also very easily "maintained" by, as Violet Flame said,
blood thinners or an asprin a day. Regarding the issue of not being
able to be on blood thinners if she wants to get pregnant, my sister-in-
law had four miscarriages until they realized that she had a blood
clotting problem; she was carefully monitored as she took daily
injections of blood thinners which eliminated the problem resulting in
a healthy pregnancy (and baby!).  Just wanted to allay any fears of
taking blood thinners while pregnant- but, of course, this is something
that your OB will determine.

The first cardiologist I saw said I should not have mine closed after my stroke.
The following four cardiologists I saw all said to have it closed.  Definitely
seek multiple opinions.  It is too important of a decision not too.

There is no definite consensus that having the PFO closed is the right thing to
do.  There are other options, such as life-long coumadin, etc.  I didn't find
those options real appealing, as there are significant risks associated with ALL
treatment options.  I do a lot of mountain biking, trail running, etc, so the
consequences of a bleeding event on coumadin led me to have mine closed.

You have to choose the option you feel is right after getting all of the
information you can.


--- On Wed, 8/27/08, Denise <goldilocks35@...> wrote:

> From: Denise <goldilocks35@...>
> Subject: Re: [PFOSupport] What's the truth?
> To: PFOSupport@yahoogroups.com
> Date: Wednesday, August 27, 2008, 9:12 PM
> I had mine closed because I had a stroke.  My PFO was never
> diagnosed until after my stroke even though I had open heart
> surgery at 6 weeks of age. 
>  
> Remember- you always have the right to see more than one
> doctor and educate yourself. 
>
> Life is all about holding on and letting go.
>
> --- On Wed, 8/27/08, Mike Brubaker
> <mike_brubaker@...> wrote:
>
> From: Mike Brubaker <mike_brubaker@...>
> Subject: [PFOSupport] What's the truth?
> To: PFOSupport@yahoogroups.com
> Date: Wednesday, August 27, 2008, 10:14 AM
>
>
>
>
>
>
> Hi, all,
>
> My wife just got diagnosed with PFO and a ASA as well,
> which seem
> to be the same thing, from what I can tell. Everything
> I'm reading
> online from Mayo, Hopkins, American Heart Association, etc.
> is saying
> that there is no proven link between having a PFO and a
> higher risk of
> stroke and that they do not recommend arbitrarily closing
> the PFO as a
> precautionary measure. This is also in line with what my
> wife's
> cardiologist is telling her. But, on this group, it looks
> like most
> of you have had it closed anyway. What was the reasoning if
> I might
> ask? We're not really looking to have heart surgery if
> we can avoid
> it and she has no symptoms of any kind, it just showed up
> on a EKG
> looking for why she has a heart murmur sometimes. We're
> just trying
> to figure out if it's a big deal or not. She's 33
> years old.
>
> Thanks,
> Mike Brubaker

Hi Mike,
I can't speak for all the members of the group about why they've had
their closures, but I have had 2 strokes due to blood clots from my
PFO, and that is why I had mine closed.  If your wife doesn't want to
have the surgery, she could always just go on an aspirin a day or a
blood thinning medication to keep her from having clots. Of course, if
you're going to have children, she can't take the blood thinners while
pregnant, but you need to discuss that with your doctor.
Good Luck!
Solitaire

Hi, all,

    My wife just got diagnosed with PFO and a ASA as well, which seem
to be the same thing, from what I can tell.  Everything I'm reading
online from Mayo, Hopkins, American Heart Association, etc. is saying
that there is no proven link between having a PFO and a higher risk of
stroke and that they do not recommend arbitrarily closing the PFO as a
precautionary measure.  This is also in line with what my wife's
cardiologist is telling her.  But, on this group, it looks like most
of you have had it closed anyway.  What was the reasoning if I might
ask?  We're not really looking to have heart surgery if we can avoid
it and she has no symptoms of any kind, it just showed up on a EKG
looking for why she has a heart murmur sometimes.  We're just trying
to figure out if it's a big deal or not.  She's 33 years old.

Thanks,
Mike Brubaker

If your patch has completely healed, you may not need to premedicate for life. 
My dentist showed me an article last time I was in, I think from the American
Academy of Cardiology, that suggests there may not be as much of a need to
pre-medicate as once believed.  Of course, I forgot to pre-medicate the last
time I was in and they gave me 2 grams of amoxicillin "just to be safe", so
definitely talk to  your cardiologist.  I moved a while ago and haven't found a
new cardiologist yet.  I will let you know what mine says when I finally get in
to see them.

Makr


--- On Sat, 8/16/08, Leigh Anne DelRay <delraygoddess@...> wrote:

> From: Leigh Anne DelRay <delraygoddess@...>
> Subject: Re: [PFOSupport] Re: CardioSeal Occluder implants and the dentist.
> To: PFOSupport@yahoogroups.com
> Date: Saturday, August 16, 2008, 12:41 AM
> I found out that is the case for life! Is that true? if so,
> why?
>
>
>
> --- On Fri, 8/15/08, Violet Flame
> <violetflame11@...> wrote:
> From: Violet Flame <violetflame11@...>
> Subject: [PFOSupport] Re: CardioSeal Occluder implants and
> the dentist.
> To: PFOSupport@yahoogroups.com
> Date: Friday, August 15, 2008, 10:32 PM
>
>
>
>
>
>
>
>
>
>
>
>             Yes, you need to premedicate with antibiotics.
> Call your cardiologist
>
> or family doctor.

I think it's to prevent any infection where the implant is in the
heart.  This is the rule for all heart implants, including stents.
Didn't your cardio tell you about this?

http://www.blogtalkradio.com/Migraine/2008/08/20/Migraine-Chat

On Wed. August 20th I will be talking with migraine specialist Robert
Kunkel, who has worked for many years in the Cleveland Clinic Migraine
Clinic.  You can listen on line, or on itunes.

Yes, you need to premedicate with antibiotics.  Call your cardiologist
or family doctor.

I have the CardioSeal Occluder metal implant in my heart.
Do you have to pre-medicate before a dental appt.? I have a terrible toothache
and need to go to an emergency dental appt. I was wondering if I can just go, or
do I need to take anti-biotics? And why do you have to do that anyway?
Implant was nov. 2007 and I am off plavix now, and only on daily aspirin.
Thanks for any info. I have calls into my docs, but the appt for the dentist is
in only an hour, so I need to now like yesterday.
Thanks anybody,
Leigh Anne DelRay

I have the amplatzer, but there are other ones on the market as well.  Each
doctor will have their personal preference.  The biggest issue is to find a
doctor that is experienced with this procedure and that you are comfortable
with.  I would recommend the doctor I had because my experience was great, and I
suspect many people in this group would also recommend their doctors.  However,
there is likely someone near you in Texas that is experienced at performing this
procedure and that you will trust, although it may take some effort on your part
to find that person. 
There are other procedure that are being tested in clinical trials, and you may
want to discuss those with your doctor.  However, you have to compare the
advantages of a device that will partially dissolve versus one that remains
implanted permanently, and you should have those discussions with your doctor. 
I believe there is also a procedure that uses RF energy to seal PFO's, but am
not sure what stage of testing this device is at.  I talked with my doctor and
chose to have the amplatzer device implanted because of the risk of additional
strokes and the length of time until alternatives would become available.
Good luck.



----- Original Message ----
From: Violet Flame <violetflame11@...>
To: PFOSupport@yahoogroups.com
Sent: Thursday, August 7, 2008 9:22:57 AM
Subject: [PFOSupport] Re: Need to understand PFO and best treatments for!

There are a few devices made by different companies.  This group does
not endorse one company or one specific device.  Many of us have just
had the amplatzer, but it doesn't mean it's the device of choice.
Don't be afraid to shop around for doctors and devices and ask
questions.
You are the customer.  If you were shopping for a car, would you buy
the first one the car salesman told you to buy?


--- In PFOSupport@yahoogroups.com, "Terijo Brewton" <terijo@...> wrote:
>
> Is the Amplatzer the one we want?  Aren't there more than one type of
> device?  When I first understood there WAS such a device, I think the
one I
> heard about actually dissolved or something.
>
> Thanks, Terijo
>



------------------------------------

Yahoo! Groups Links

There are a few devices made by different companies.  This group does
not endorse one company or one specific device.  Many of us have just
had the amplatzer, but it doesn't mean it's the device of choice.
Don't be afraid to shop around for doctors and devices and ask
questions.
You are the customer.  If you were shopping for a car, would you buy
the first one the car salesman told you to buy?


--- In PFOSupport@yahoogroups.com, "Terijo Brewton" <terijo@...> wrote:
>
> Is the Amplatzer the one we want?  Aren't there more than one type of
> device?  When I first understood there WAS such a device, I think the
one I
> heard about actually dissolved or something.
>
> Thanks, Terijo
>