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PFO Closure Part 1 of 2 - CLOSED

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Posted 7/28/2009 8:39 AM (GMT 0)
Hello

I've finally got a date for my PFO closure, 14th August, was hoping to post and see how everyone is doing but the old PFO closure thread is locked? Am I missing something?!

Is there anyone else waiting for their procedure? I'm starting to get nervous!

Post Edited By Moderator (stkitt) : 3/1/2010 2:27:03 PM (GMT-7)

Posted 7/29/2009 12:22 AM (GMT 0)
Hi I'm a new member & saw your posting & joined healingwell. I'm a healthy (about 15 lbs/8% over weight) 51 year old that gets vigorous exercise 4-7 days a week yet had a stroke last summer. The only conclusion they could reach was that it came from a PFO they found after doing a TEE. I have elected to be on coumadin for the last year rather than close the PFO but am Very Interested in getting the PFO closed sometime in the next few years. From what I can gather it's a pretty safe procedure & the technology & closure data is getting better all the time. Would love to have a forum to discuss it. What device are they going to use to close your PFO? Where are you having it done? What is your story?
Posted 7/29/2009 10:21 AM (GMT 0)
Hello John

Thanks for your reply. I'm female, 40 yrs old, I'm slim and was fit and healthy until last summer, like you, I also had a stroke. At first I was told I had a carotid artery dissection but 6 months later they changed their minds. I was having palps and breathlessness so my GP sent me to a cardiologist who felt sure I'd have a PFO. I had a TOE (i'm in the uk with their different spelling!) which confirmed a moderate sized PFO.

I've been on warfarin/coumadin for the last year but I hate it. I have a few horrible bleeding incidents and have lots of stomach pain which is probably stomach bleeding. I can't wait to stop taking it. Also I've got 2 young children so I have a lot of rough and tumble in my life and I'm always covered in bruises!

I'm having the Amplatzer device, my cardiologist has done many of these procedures and is really forward thinking. In the last year he's the only consultant i've met that i've had any faith in. I've met so many people that have been worryingly blase. When I went to A&E on the day of my stroke I was sent home, the consultant said people like me didn't have strokes, I was too young, too slim and too female apparently....... shocking.

How are you feeling now? Has the stroke left you with problems?

Thanks again for getting in touch!

Posted 8/3/2009 2:13 AM (GMT 0)
Hey Everyone, i'm new here. I have to make this quick because I am so tired! I am 27. I am married with 3 babies under 3 yrs old. I had my closure done 4 weeks ago. I want to worn those of you who are on coumadin to be very careful when you stop taking it 3 day before the procedure. My Dr's sent me home the very next day putting me back on coumadin before my blood was at a therapeutic level. I didn't know but you need to be on Heparin or some form of blood thinner before you can start coumadin or it had the opposite affect. I had my worst stroke yet (my 5th TIA) that night and had to call 911 to go back to the hosptial for another 5 days. You may already know this but I did not. I hope this will save someone from going through what I went through. How does a doctor make this mistake? Every story I have read on here was so positive. Having my PFO closure has, at this point, ruined my life. I am sick every day. Then the medication the dr gives me makes me even worse with all the side effects. I am a walking migraine almost 24hrs/day. barely able to take care of my own childrn.
If anyone reads this who has has migraines AFTER the procedure please....do they every go away? I was an athlete, a mom, a friend, a wife....I need my life back. I know it has only been 4 weeks but from what I read I should not be having migraines! I didn't have them before! Seems like everyone else who have this done feels great after a week???? so confused and scared. I will share my entired story and all of my symptoms tomorrow when I am not so rushed. I needed to vent.
Posted 8/5/2009 9:43 PM (GMT 0)
So my doctor is going through the paperwork to get me a pfo closure as well. I'm a little nervous about it but it seems like the right decision. I am 21, very healthy, and I had a blood clot in my eye that caused me to lose 1/4 of the vision in my left eye. They think it got through the pfo they found in my heart . I don't want to go on coumadin, sounds like an awful time to me, considering I love martial arts and rock climbing and would have to give them up. But I'm worried my doctor is not being completely honest with me about the recovery. I just want to know how long it will take, and what I can do, because I will have to start college again not long afterwards. What have you all experienced?
Some of you seem to have suffered quite a bit. As I was reading through some of the posts in the other thread I was starting to get worried.
Brknhrt, you say you didn't have migraines before but they started afterward?? I really don't want that to happen. Any word on why they started?
Posted 8/6/2009 7:11 AM (GMT 0)
brknhrt - sorry to hear you are having such a hard time. I've read loads and it does seem like the unfortunate people who develop problems tend to improve after 2-3 months. That probably sounds like a long time but when you feel something is never gonna stop it's awful. I'm on warfarin, I'm stopping it 3 days before but will be on a different drug after the closure, I think it's called Plavix in the US, I'm hoping never to take warfarin again, I hate it.

Were you awake during the procedure? How were you immediately afterwards, did the migraines start straight away?

tkdfreak - must be tough when you are so young, I think i'm young to have this at 40! Try and remember most people do really well after closure, my friend's husband had it a few months ago and has never been better, much more energy, happier etc, no problems at all. Also people who have problems are more likely to post on forums, if they are feeling great they are out enjoying life - at least that's what I tell myself! Don't want to worry more than I am already.

I'm going in next Friday, counting the days........

Posted 8/13/2009 9:14 PM (GMT 0)
I had the pfo closure through catherization done on August 5th. I had identified the pfo due to a family history of pfos and strokes. While I had not experienced a stroke prior to the closure, I had horrible migraines with aura when flying and had suffered severe decompression illness when scuba diving. After two TEEs and a bubble study (TCD), it was determined that the left to right shunt was severe and that the hole should be closed.

I spend a lot of timing reading these boards and felt terribly anxious about the procedure. I was amazed how simple the procedure was and how quick the recovery. I live on the east coast and had the procedure done on the west coast by a doctor that had performed the closure two years ago on my father. My dad had experienced 3 strokes and has not had one since the closure was done.

I was able to fly across country to return home on day 6. I am on plavix and aspirin and was told not to get my heart rate about 110 for the next 2 to 3 months while the device became part of my heart. At the end of the procedure, the bubble test indicated that the closure was excellent and that no bubbles passed. I made that flight across country without a Migraine, without naseau, without an aura. I am thrilled! The doctor could only assure me that the closure would minimize my stroke risk.

I returned to work yesterday full time. I have zero pain anywhere. I'll be honest the mental issue has been tougher than any part of the experience. I had a lot of anxiety going into the surgery and still am edgy about what I can/can't do and not wanting to do anything to take away from the extreme success.

I wanted to write because as I read the boards I became more worried. I know most everyone is trying to decide whether to have the surgery, struggling to get the surgery, awaiting the surgery or had complications. I just wanted to assure those pending the surgery that there are a lot of success stories and positive outcomes. My dad and I are both success stories. Your friends and family will be amazed at how quickly you are back at life following heart surgery. It really is a miracle.
Posted 8/13/2009 9:30 PM (GMT 0)
thanks so much for your positive story. i am currently using a bedside computer in hospital in the uk. my closure is due to take place tomorrow. thanks again!
Posted 8/14/2009 12:45 AM (GMT 0)
     Hello everyone. i'm new to the site. what got me here unfortuntly was a stroke which i had on 20 july 09.I came thru it pretty well as doctors say. i have balance problems and my left eye is slower then my right.doctors gave me all the tests and found clotted pica artery due to a clot. more tests indicated very tiny hole in heart. (pfo ) i am home and prescribed 81 mg asprian and pravastatin 20 mg. everything good even my cholestrol. i am in very healthy shape ( hard worker ) i do get migrains. lesser now since i got older. my early 20's i had migrains several times a week  ( bad ones ) i am looking into getting this pfo procedure.  I live in new jersey and looking for the best place to have it done. i have read alot of replys everyone has written.any and all information welcomed.  thanks godbless   joe    
Posted 8/14/2009 7:32 AM (GMT 0)
All,

I am glad to see the PFO thread is still going, albeit in slightly different format.  I want to reassure all of you that most PFO closures are successful.  Some people have some trouble during the recovery phase, but most go on to lead normal lives again, as they did prior to symptoms and complications from their PFOs.  Remember, that it is the heart we are dealing with, a central organ in the function of your body and hence your survival.  Having a tooth pulled takes a few days to heal, now imagine implanting something in your heart, one of the most important organs in your body! 

I think many of the people that have posted in the past and continue posting are people who had symptoms and side effects that their doctors had not mentioned to them.  Now, 3 years later, most doctors mention at least some of the side effects many of the patients have reported here.  I think this was partly due to PFO closures being new technology and science.

I am living proof that this procedure is amazing and will in most instances give you back your quality of life and may very well save your life.  I was very sick leading up to the procedure - I won't bore you with the details because I have posted them extensively on the "PFO - open heart or transcatherer 1, 2 and 3" threads.  I had a mini stroke (possible small stroke) and my heart was starting to fail by the time I had the procedure done and found super doctors who listened to me and my symptoms.  Therefore, the road to recovery was slow for me.  But, I am 9 months post-op and feel better than ever.  Yesterday I celebrated by 41st birthday and I felt so grateful to still be alive and healthy again!

It is a tough decision that you are making, whether to have your PFO closed or not.  You are not choosing between pasta or hamburgers for dinner.  It is a decision that could potentially save your life, but is not without complications.  I hope you can find some comfort in knowing that many of us have had to make that decision and it has been one of the toughest ones in our lives.  Most of us have gone on to lead normal, healthy, active lives again.  This is when many of us stop posting because we are too busy being "normal" again.  I have not posted in over a month because I have been too busy exercising again, taking my son to a pre-college course, then picking him up and taking the opportunity to take a vacation while I was up in the New England states, then getting ready for his surgery (he has a rare, non life-threatening disease that requires surgery on his vocal cords every so often) and then finally celebrating my birthday on August 13th. 

I have always been grateful for everyday that I am on this earth, even before this life changing event, but now even more than ever.  Life is so beautiful and the challenging times are what make it all worth it because they make us better people at the end of the day and they make us enjoy all the pleasurable, happy moments that much more, no matter how small. 

I apologize for being so wordy, but I wanted to give all of the newcomers to this forum some words of encouragement.  This site truly helped me keep my sanity during one of the most difficult periods in my life, and I am just merely paying it forward.  There is hope and a wonderful life after this trying ordeal that you are all going through. 

I wish everyone much wisdom and luck in making your decisions.

With deep respect,

Greenhope

Posted 8/15/2009 2:26 PM (GMT 0)
Withnail 1969 hello my name is joe new jersey u.s. i hope you are doing well.
Posted 8/15/2009 4:10 PM (GMT 0)

Withnail1969, I hope all went well with your procedure and that you will keep us posted.

Greenhope

Posted 8/15/2009 4:29 PM (GMT 0)

Hello Everyone,

I would like to encourage all of you to join the PFO Migraine Stroke on Facebook.  The website address is: 

http://www.facebook.com/group.php?gid=106434738635&ref=mf

The description of the group's purpose is as follows:  "This is a group discussion open to people who have had or wish to have their PFO's closed. This group seeks to facilitate the discussion around PFO closure and forward research related to PFO closure technology, in hopes of making it appropriately available to U.S. citizens. This group is working under the acronym of CAPPC, pronounced "caps," which stands for Consumer Advocates Promoting PFO Closure. While medical issues are discussed from diverse patient perspectives, it is important to consult your doctor for medical advice as this site is not intended to replace the advice of qualified physicians."

I hope you will at least visit and join if you are so inclined.

Regards,

Greenhope

Posted 8/16/2009 7:43 PM (GMT 0)
Hello i live in new jersey u.s . other than going out of state to have this pfo procedure has any body heard of any good credited places to have it done. my doctor said he will be checking but i like to do my own search. any information would be most helpful. thanks joe
Posted 8/16/2009 9:49 PM (GMT 0)
Hello everyone

Thanks for your messages.

I had my closure on Friday. I was in the catheter lab an hour longer than expected, they struggled to control my blood pressure and heart rate and had to re-start the procedure more than once. It seems I reacted badly to the anaesethetic.  I felt awful when I came round, bad migraine, very sick etc but was very well cared for. The cardiologist said having a migraine was a good sign (though it didn't feel like it at the time!) When I took the gauze off my leg wound there were 3 puncture marks! I'm just so grateful that they kept going and didn't halt the procedure. I had a 25mm Biostar device fitted. Once the sickness and migraine were dealt with I felt a lot better. I was on a drip and heart monitor for 24hrs and came home 4pm yesterday. By midnight I was bringing up phlegm and blood so called the ward who sent me to A&E, my throat was cut and swollen (from the TOE) so they started me on antibiotics as they didn't want to risk infection.

Today I feel warm all over, I've always had icy cold or clammy hands and feet, it feels so strange to be the same temperature all over. I feel different, I feel better. Though as the two consultants said 'it certainly wasn't straightforward' I feel I was unlucky and I don't regret it for a minute.

I went with my boys to the park today and watched them play football, I slept a lot but overall can't believe how good I feel only 2 days later.

Look forward to hearing all your news!

 

Posted 8/17/2009 3:07 PM (GMT 0)
Hello Withnail1969,

So happy to hear that you got through your early complications and are already feeling better!  I am 12 days now since the surgery and the most amazing thing is that I have not had any kind of headache since the one following surgery.  I am just astounded.  While I only complained about the horrible migraines, I suffered somewhat of a headache just about every day.  It feels so good to go full days with zero head pain.  I also feel like I am breathing better and am starting to have more and more energy.  By the way, I am a 43 year old female from New Jersey (although I had my surgery in California). 

So lots to look forward to and just continued to be amazed that the medical community is so unaware of the impact that PFOs are having on people. 

Take care and look forward to corresponding through our successful recovery.

 

Posted 8/17/2009 3:19 PM (GMT 0)
ALL I CAN SAY " WOW THATS GREAT " FOR BOTH. HOW DID THIS PROCEDURE GET TO CALIFORNIA FROM NEW JERSEY?
Posted 8/17/2009 9:35 PM (GMT 0)
Hi Blazer,

I went to California for mutiple reasons.  My dad lives in Southern California, had 3 strokes (late 50s) and then had his PFO found and successfully closed by a cardiologist there two years ago.   After seeing a neurologist and cardiologist(s) here in New Jersey, I found their knowledge limited about PFO's and skeptical of any relation to migraines but also had read/heard that you could only get the closure in the US if you had two previous strokes.  

My uncle also had two strokes at a young age (early 50s) and then they identified his PFO.  He lives in PA.  He was put on Coumadin and has not had the surgery. 

I had looked into a few trials here on the East Coast, but I did not care for the 50% chance or less of getting an actual closure in the study.   I knew I wanted to get the PFO closed prior to having life changing strokes.   I decided my best chance at getting the surgery was seeing someone extremely knowledgable on the subject who could incorporate my family history so I could get a proactive treatment through closure.  And I was accurate.  I saw my dad's cardiologist, he reviewed my history and symptoms and was able to get insurance to approve the closure.  I was incredibly impressed with his knowledge and understanding of PFOs. 

It certainly has disadvantages flying across country for appts, surgery and follow up.  But I genuinely thought it was my only hope.  I also had parents there to stay with.  I hope this insight is helpful.

 

Posted 8/19/2009 4:13 PM (GMT 0)
    Greenhope hello from blazer. i checked out the other tread and i can't even imagine what went thru your mind when you heard doctors performing the procedure and hearing that  ( this one won't work lets try the other one')  you have quite a bit of knowledge about this . it fells good to have someone on our side.
Posted 8/19/2009 4:49 PM (GMT 0)
Hello everyone
Blazer, hope you are feeling clearer now that you have starting researching where to have your procedure.
Greenhope, thanks for your input. I've been reading your old posts over the last few months so I almost feel like I know you (hope that isn't too weird!) Glad to hear you are in a good place now.
Mamabear, hope you are still doing so well, you've made such a great recovery.
I started bringing up blood clots today so ended up in A&E again..... after a very long wait the dr was happy that the blood is old and it should now stop. Lets hope so. Feeling tired with it all today but knew they'd be tough days. I'm certainly not having any regrets.
Do keep in touch!
Posted 8/24/2009 2:43 AM (GMT 0)
Hello, Blazer and Withnail1969. 

Blazer, to be quite honest, when I was hearing the doctors say those things and feeling the catherers snaking in and out of my body, I wasn't worried at all.  But, I think this was the result of the very effective "relaxing" drugs that they gave me.  I remember thinking, "this sounds serious," and I remember feeling the instruments going through my body, but I was definitely not worried thanks to whatever "happy pill" they gave me - thank goodness for happy pills!  I hope all the information you are researching will help in making your decision.  I think there is an awesome doctor in NYC.  I don't know his name, but I think on the PFO...#2 thread there was a lady from NY who had her procedure done by a well respected doctor with much experience with PFO closures.  I have heard from many posts that Dr. Sorensen (maybe in Utah?) is also amazing and I think in Boston there are a few awesome doctors as well (including the one who closed Tedy Bruschi's PFO).  My doctor, of course, is also amazing and is well known in this region for his skill and expertise.  But, he is in Miami and that would be a bit far for you considering all the amazing doctors who seem to be relatively close to where you live. 

Withnail1969, I am glad you are recovering relatively well.  There are complications sometimes, but from reading the posts I imagine you were read for this.  This is what makes this forum so valuable, to know that you are not alone.  I don't think it's weird to feel as if you know me.  I think that was my intention when writing about my ordeal.  I was just one more person walking through the road of life when suddenly this great big boulder fell on the road in front of me out of nowhere, and blocked it.  I was able to climb over that big hurdle and keep on walking (or running!) and I wanted others to know that it is possible to do.

Mamabear, I am happy to hear you are recovering so well.

I wish everyone much wisdom in making their decisions.

Greenhope

 

Posted 8/30/2009 12:07 AM (GMT 0)
               Hope everyone is well. Could someone tell me what a TIA is.
Posted 8/31/2009 4:28 AM (GMT 0)
brknhrt--- I am sorry that you have had such a tough recovery. I started a new post for amplatzer closures...please read it for more info. Anyway, I too am married with three children, and had a ASD closure with an amplatzer. I felt awful the first few weeks..I felt dizzy, lightheaded, faint, and started getting occular migraines (vision is distorted but no headache). I have read that migraines like yours are not uncommon in some people that have had closures and they do go away with time. My heart checked out fine and my doctor was sure it was'tn the device making me feel sick. He thinks that bc I have been under much stress (finding out about my hole in the heart during a routine physical before going back to work from my mat leave (3rd baby). Added to the stress of either open heart surgery and not knowing for a while if I would be a good candidate for cath closure didn't help. He thinks I was having panic attacks, much like post traumatic stress....the stress is there, the surgery is trauma to the body, and after the body is feeling the affects. Not to mention having 3 young children and worrying about them, and yourself and your recovery. I feel MUCH better now than I did a week ago, and every week has been an improvement. I wanted to let you know that my doctor has done some 400 closures and said I am in the minority. Most feel fine right after closure, if not better. But, he said the important thing is how you feel. And he's right. Try to find some time to relax, to unwind. I know it's easier said than done. Plus your subconscious mind worries for you...The more I worried why I was feeling this awful, the worse I felt. I hope you are starting to feel a bit better....let me know. Take care,
Posted 9/11/2009 1:31 PM (GMT 0)
Hello

Just wondered how everyone is doing?!

I'm 4 weeks post closure today and doing fine. My heart still goes a bit fast when I go upstairs or rush around too much but it settles quickly.  At night I'm getting a few thumps or extra beats in my heart that I'm not enjoying. It's usually soon after lying down and I have to lie a certain way to avoid them continuing. It unsettles me but it's usually a few beats and then I'm ok again.

I don't have a follow up until Feb and I'm hoping I can wait until then. I don't really want to request an extra appt, since my stroke last June I've been to endless appts and it'd be so nice to have a break from that.

I was hoping to come back from the closure like the Bionic woman and it hasn't happened! I do have more energy though it's just seems gradual rather than an overnight thing. My husband is a teacher so only went back to work this week and he's noticed I've done more around the house etc than I was doing previously. I guess the small things will add up.

The best things are - no dizziness, no migraines but best of all is knowing the risk of stroke is reduced.

Hope everyone else is having a good day!

Posted 9/12/2009 1:01 PM (GMT 0)
Hello Withnail1969!

I am 5 weeks post and headed out to California on Sunday for my one month follow up. The cardiologist that performed my closure requires follow up a 1 month, 90 days, 6 months and a year. I believe he is doing an echocardiogram and TCD on Tuesday to determine progress of the device sealing. I still have not had a migraine, almost no headaches of any kind and a hugh reduction in nausea. His instructions required no exercise for at least ninety days (doesn't want heart rate above 110) and stopping my workouts. I feel like I breath better (sometimes I would feel like I was struggling) but not necessarily more energy. I went back to work within a week of the procedure and have not had any issues. The first week I had some strange sensations and pains (nothing severe just unusual) but zero since.

I saw my neurologist on Thursday and I think he was in shock! He had not referred me for the procedure and had been seeing me for the severe migraines. I have 8 flights in the next four weeks (2 cross crounty and 2 in excess of 7 hours traveling to Europe). My migraines were severe after flying prior to the surgery. I have flown 3 times since the procedure - but only one long flight - the return home from CA to NJ. So the next 4 weeks will be a big test of how successfuly this procedure is. I am going to Europe for the first time and I am so excited. Excited about the trip and excited about the possibility of knowing that I won't be sick when I arrive and come home.

Look forward to hearing about your recovery and I'll check in to let you know about my appt this week and the success of all of these flights!

Take Care!
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