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PFO Closure Part 1 of 2 - CLOSED

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Posted 9/13/2009 2:16 PM (GMT 0)
Hi Mamabear
Glad to hear you are doing so well. I remember reading your positive post when I was waiting in my hospital bed - it really helped!
Hope your appts go well on Tuesday. Can you tell me what a TCD is? You have a lot more follow-ups in America then we do in the UK. My first follow up is at 6 months!
Hope your trip to Europe is fun, where are you going? I'm going to Majorca in October that will be my first flight. I'll still be on Clopidogrel so I feel fine about it.
Hope everyone else is doing well!
Withnail
Posted 9/14/2009 3:39 AM (GMT 0)
Hi Withnail,

Well I made the 6 hour flight to California and no migraine! I feel great and it is just amazing as I could not make this trip without getting deathly ill prior to the surgery. A TCD is a transcranial dopplar and is often referred to on these boards as the bubble test. My understanding is that tt is a test that were they inject a fluid and test if bubbles pass thru the PFO to your brain. The measure it on a scale of 1 to 5plus and it helps determine the severity of the shunting from left to right. When they did the test for me, it was off the scale and the cardiologist then immediately wanted to do the closure. It actually triggered a migraine immediately while I was taking the test.

We are taking a cruise the coast of Italy starting in Venice, Croatia, Crete, Grece, Marseilles and Nice France, Barcelona. We are stopping in 14 different places. I very excited. I am taking Plavix (which I think is the same as clopidogrel) and aspirin daily.

Hope you are doing well also.

Mamabear
Posted 9/14/2009 11:27 AM (GMT 0)
Hi Im new to this, Ive had two Tia's in 5 weeks and one last Nov, they found out ive got a PFO which needs closing up, reading all your comments make it not so scarey, but I have a few questions, my last Tia was 3 days ago on Friday and the hospital sent me home as Ive gone private, thing is can I drive?, as ive been on loads on web sites and they say I can't, im just waiting for my doctor to call me, the Tia's lasted around 30mins and only weekness in my right side then it goes within 24hrs, but my right leg keeps giving way a couple of days after and this last for around 3 weeks, does anyone else have this, as my doctor does not think it is linked but I do.

Regards

Lisa
Posted 9/15/2009 2:27 AM (GMT 0)
Hi All: Don't know how I ended up in a different thread with my first posting (how does this work anyway?) Thank you Mamabear and Withnail1969; I believe you were the two who responded to my first posting. Just want you all to know I was quite awake during my 8/18 procedure, and able to hear the conversation between the cardiologist and a rep from Gore Tex (who made the helix device)and able to hear how pleased they both were with how the device "closed", which was quite reassuring, as I was experiencing major palpitations (which thanks to y'all I knew were not uncommon), and had just experienced them accidently hitting an artery instead of a vein for the catheter (hence a large lump and bruise afterwards, now mostly gone). I had my stroke (massive, rt. side, but caught in time) 6/15 (in hospital 11 days with that, and overnight for the PFO closure), and now am starting to feel pretty much myself. I've had to trade in my 4 day/week Y workout for daily walks for now as the gym seemed to set off the palpitations that started up week 3. This is week 4, and I've not had major palpitations for 2 days, just chest tightness and a pre-asthma feeling at the base of my neck, and ibuprofen seemed to help that a little. I am on Plavix, aspirin, Zocor (for inflamation),lisinipril, & a daily ibuprofen. I do wish the palpitations and tight chest would go away for good! I'm in California & 57.
Posted 9/15/2009 7:04 PM (GMT 0)
Hi All:

Has anyone besides me had their PFO repaired with the Gore Helix device? My cardiologist showed me the other devices, but this is the one he, clearly, prefers, tho. it's apparetly quite new,and studies not completed yet (not sure if my Ins. will cover my procedure...sigh). As an artist, I liked what appeared to be a rather elegant design, though of course that doesn't mean it's better. I believe mine is large, a "3" (not sure 3 what, I'll ask my cardiologist when I see him tomorrow).

Should I post this as a new topic?

--Guitargirl
Posted 9/18/2009 7:35 PM (GMT 0)
I had a PFO repair in May of this year.  During surgery, Dr. Sorensen discovered my PFO was approximately 25mm and "tunneled" quite a bit more than he had expected.  He used the Gore Helix device and I have had fewer complications that a couple of my friends with other devices.  I was told I was a 5+ before surgery...that is just a measure of how much flow there is between the atria (at least that's what I inferred).  I hope that this helps...let me know if you have any specific questions I can answer.

-Dawn

Posted 9/19/2009 1:37 AM (GMT 0)

Hi There,  I had my PFO closed (transcatheter, CardioSeal?)in Mid August this year.  about 5 weeks out and feeling very good and very grateful for the procedure.  Many migraines/TIA's that cropped up 5 years ago and took over my life.  I am having the chest heavyness, and some dizzyness (I ran the treadmill yesterday for 1 min. and got my pulse up to 100) won't do that again for awhile.  But, I am probably the most sceptical/nervous person you will ever meet.  If I can withstand this procedure, most people could.  I was put completely out, (thank you). 

If you are nervous about the procedure get second opinion and even a third if necessary.  I had 2 other cardiologists tell me that the procedure was too new to consider.  I am so glad I got the 3rd opinion.  An angel was listening. 


Post Edited (Renew75) : 9/21/2009 7:25:24 PM (GMT-6)

Posted 9/20/2009 2:17 AM (GMT 0)
HI all!

Wow, there are a lot of us with this procedure recently!

I just had a PFO closure on Sept 2nd via catheter and the DR used an Amplatzer Device (25mm).

I am a 34 year old female. I realize in hindsight that I had symptoms in my early 20s when I was very competitive with running but the DR at that time told me my symptoms were stress and being a woman. Nice.

Then about four years ago, fatigue set in. It was so gradual that I thought it was age and stress. This past year, everything spiraled out of control. A year ago, the fatigue started becoming extreme. I would feel exhausted like I had been drugged. The DRs kept running tests but since I had no murmur and was so healthy, had not yet considered my heart. Then this past March, I began having palpitations which I thought were probably hormone related as my GYN discovered that I was pari-menopausal already. Then my Migraines with Aura kicked up bad. Instead of having a few per year, I had one to two per month. By the end of June 2009, I had extreme fatigue and fluttering kicked in. I ran to the DR and they hurried me through a Holter Monitor and an Echo. The Contrast Echo (bubbles!) showed my PFO.

By the end of July, I was seeing my Cardiologist. His specialty was PFO closure via catheter and came highly recommended from friends in the medical field. He is the most experienced in the area.

He did a TEE on August 14th and determined that it was small and I was a candidate for the catheter.

On Sept 2nd, I went in for surgery. I was awake for the whole thing even though they had pumped me with lots of narcotics. That was awesome and very comfortable, btw. The downside was when he suddenly realized there was a problem. Once the sizing balloon was inflated, he could see blood flowing around the balloon still even though it was clearly pinched. He immediately realized that my PFO was fenestrated and HUGE. The small hole that they had previously seen was just the largest opening of many. He said it was like "silly string". He got creative since the balloon was useless. They drew a line on the Echo machine, counted the pixels in that line, then converted that number to the new and bigger sized device that I would need.

Amazing. I remained in the Heart Hospital overnight which was awesome. I was released the next day following a complete Echo that showed no leakage.

I see him again on October 8th.

I did great the first two weeks. But I have noticed a return of very mild flutters with no pattern. They are gross feeling and much more mild than before the surgery but annoying in a way. If they are still there when I see him in two weeks, then I will see if they are a problem that needs attention.

This is a great forum and has relaxed me quite a bit for the recovery side. The fluttering scared me and I have had a couple of moments that felt strange.
Posted 9/20/2009 9:28 PM (GMT 0)

Hi EnKidu,

I know that feeling of strange heart palps.  about 2 weeks after my surgery I would lay down and the palps would start, I tried every position possible to stop them.  (Originally when I had heart palpitations, I would just cough and they would go away) The coughing doesn't work, but I was told (Cardiologist) to bend my right leg up to my chest or lean over to the right, these didn't work.  I was also told it may be the device healing and rubbing a little on the right atrium, but it would subside in 2 to 5 months. And it is not life threatening.  I just find it a little uncomfortable and annoying when I'm trying to sleep.  I have been drinking lots of water and it seems to help the situation. (Although I'm not sure if it has anything to do with palps.)

I am at 5 weeks now and I overdid the treadmill and feeling it for 3 days now, my chest is sore and head dizzy, but it is getting better.  I would just suggest not overdoing it.  (Whatever that is...) I am peri-menopause too and hot flashes are not making this adventure fun.  Hang in there and take care!  Renew75

Posted 9/25/2009 2:34 AM (GMT 0)
Thanks so much.

I had some of these problems before my PFO closure.

My Cardiologist's office put me in a Holter Monitor (a much nicer one than the PCP office had me do).

They called this morning to just give me a brief rundown. They discovered that I am having some skipped beats (forgot to ask if they were PVC or PAC) and I seem to be having PSVT. The funny thing is that I feel better when I am having the tachycardia! I didn't even know that I was having it. I did not ask what my heart rate was at. I'll find out from my DR when I see him. But it was high enough that they wanted to go ahead and put me on metoprolol (beta blocker).

I am excited to talk to my Cardiologist and ask him if I have two problems. The first having been the PFO and the second being the PSVT with PVCs. I noticed the PSVT and PVCs over a year ago. An athletic trainer noticed my excessive high heart rate while simply walking on a tread mill.

I am thinking that the PSVT and PVCs are worse right now because of the PFO closure and my heart is all irritated. I'm curious to see if they stop or dramatically decrease after a few months, like you said.

I also found some others online that have PSVT and PVCs and it is amazing how they describe what I feel. I get the PVCs when I bend over or eat a meal. I'm also not able to lay down but must raise my upper body a bit like a person with reflux which is something else they describe. I thought I was a freak but it was common complaint for them. I was totally unaware of how often my heart was racing until they called me.

I'm glad you mention the cough. When I get a very bad bout, I have the overwhelming urge to cough but it does not work for me.

The PVC is such a wicked horrible sensation. I hate feeling that "pause" sensation in my chest.

Anyways, I am babbling.

I have been overdoing it a bit as you mentioned. Since my PFO was so HUGE, fixing it suddenly gave me an insane amount of energy. I have been running around like a mad woman. I try to remind myself to slow down but it is hard to remember. I try to keep in mind that the palps and PVCs are my heart's way of saying, "Hello, Crazy Lady, you have not exercised much in three years from our fatigue, so STOP ALL THIS RAMMING AROUND LIKE A 2 YEAR OLD!"

Not to be TMI, but I am very excited today. Over the past year, I would normally be horrifically exhausted about three days before my period would start. I think it was a double whammy of having the PFO and being slightly anemic during that time. Well, I am about a day way from starting and I feel great.

Ok, I need to stop typing before this turns into an epic novel. I really love this site. It is so great to be able to hop online and talk to other people. I know my DR tells me things to expect but, then when they happen, you still kinda freak out. It is my only heart!

Thanks so much!

I need to get to bed. My Beta-blocker is kicking in!
Posted 9/25/2009 2:41 AM (GMT 0)

guitargirl said...
Hi All:

Has anyone besides me had their PFO repaired with the Gore Helix device? My cardiologist showed me the other devices, but this is the one he, clearly, prefers, tho. it's apparetly quite new,and studies not completed yet (not sure if my Ins. will cover my procedure...sigh). As an artist, I liked what appeared to be a rather elegant design, though of course that doesn't mean it's better. I believe mine is large, a "3" (not sure 3 what, I'll ask my cardiologist when I see him tomorrow).

Should I post this as a new topic?

--Guitargirl

Hey Guitargirl,

I did not have that device. I had an Amplatz Occluder "installed". I have "met" a lot of people online on other boards that have had the Gore Helix. I did not hear anything bad or negative about it.

You must swing by after your procedure. I had a very large PFO for my heart. My DR used a 25mm device. Since my defect was so HUGE, I felt an immediate difference. I have NEVER had this much energy in my entire life.

In face, as you may have seen in some of these other posts, I have been overdoing it!

I'm having problems with PSVT (which may have been present before the surgery) and some PVC (skipped beat sensation). They did not kick in till about the middle of the month. I had my closure done on 9/2. Now, I also went back to work (I have a very physical job) and that is also when I noticed the sudden and dramatic problem of PSVT and PVCs. I wish I could take a lot of time off and relax to see if they would go away or decrease.

Please return and let us know how it goes!
Posted 10/21/2009 1:18 AM (GMT 0)
Hi. I'm new here. 49 yo woman who everybody thinks is the "healthiest person they knew" before my stroke in April of '09. Just had PFO Closure on 10/16. Gore Helex Device. 25 mm for a 12 mm hole. I've had migraines as long as I can remember. I was an ultramarathon cyclist until the stroke slowed me down. Used to get wicked "exercise induced" (didn't know they were PFO induced) migraines. Would like to get back to riding when it's smart to do so. Anyway, does anyone know where I can find a good comprehensive list of 1) what sensations a closure patient might expect and 2) what activities are acceptable during healing and when? Thanks!
Posted 10/21/2009 11:44 AM (GMT 0)
Hello and welcome to HealingWell. I am sorry to hear of your stroke but it does sound like your PFO closure has been successful.



I am wondering if your Physician may have a list 1) what sensations a closure patient might expect and 2) what activities are acceptable during healing and when?



I have not had the procedure but I am hoping that others in the forum may have information that will help you out.



Again a warm welcome to HW.



Kitt
Posted 10/22/2009 5:34 AM (GMT 0)
Hi all PFO people: I've not checked in with you all in awhile, but a friend is having a PFO repair, so in telling her about this site, I have returned. Hope you all are doing well. I found out from my cardiologist that my Gore Helix device is indeed 3mm, and my hole was very large, and that the continuing chest tightness (almost like a pre-asthma feeling) is to be expected given the size of the device. I have had occasional irregular heartbeats register on my blood pressure monitor, but now mainly only short, small palpitation episodes for the last few weeks (my PFO repair was 8/18), mostly when sleeping on the left side. And yes, coughing seems to help me too. We just got back from the Sierra's east side where I did some hiking (4 miles or so) in snow, over 10,000 ft., and felt fine; realised for part of the trip I didn't think about my heart or stroke at all. And no chest tightness either... I had been worried about that, and about the altitude, but I just got my usual altitude headache, same as always. I have also done several music performances recently, and breathing to sing is getting easier, plus I don't feel as distractable in crowds (from the stroke), which was a problem a couple of months ago (stroke was in June). Hurray for the healing power of music and mountains! --guitargirl
Posted 10/22/2009 7:27 PM (GMT 0)
Hi guitargirl,
Glad your trip to the mountains was a good one. The mountains are always good for the soul. Music is an added bonus. My stroke was in April, my surgery in October and I'll be going to the mountains (Rockies) in December. I can hardly wait, but I am a bit concerned about the altitude. Your post encourages me. BTW -- I believe your device is actually 30 mm or 3 cm since your PFO was so large. A 3 mm helex device (if it exists) would only be used for a 1.5 mm hole, which is quite small.
Posted 10/23/2009 4:53 AM (GMT 0)
Biking Fool: Thanks for your correction re: the 30 cm size of my device...Math is not my strong point (my husband would have corrected me, I'm sure, if he'd seen what I'd typed). I was definitely concerned about the altitude prior to my trip, although my cardiologist said "no restrictions...high altitude is fine". Also, I'd been walking (some hills, and as fast as I could) 30 to 45 min. a day since my stroke, but as that was a completely different workout than what I'd been doing at the YMCA 4 to 5 days/week prior to the stroke (stair machine & jogging & wts.), I had, and have, no real idea as to my current fitness (& weight is the same, but my shape has changed...), so I was worried about that as well as the altitude. I think I hiked about 4 miles, in snow, above 10,000 ft., the last mile or so solo, (and I was hurrying, as I wanted to get to a vantage point before my family started to worry about our set meeting time). I was winded, but, I think, no more than I would have been before the stroke and PFO repair. I was happy and exhilarated, tho. brought back to earth by the next morning's familiar altitude headache (no migraine though). I've been carrying an H2O bottle with me everywhere (didn't before), and somehow that comforts me, and seems to lessen chest discomfort when it occurs. I've hiked a bit in the Tetons, but have only driven through Yellowstone and the Rockies. I hope your trip is terrific!
Posted 10/23/2009 5:10 AM (GMT 0)
Biking Fool: Woops! I got it wrong again. 3cm/30mm, not 30cm or 3mm...right? (Wasn't a typo, just me)....Also, besides being on Plavix, Zocor, and aspirin, I am also on Lisinopril, so my already low blood pressure is quite low...but didn't make me dizzy hiking in the high altitude; a bit light-headed, but I probably would have been anyway. --guitargirl

Enkidu: What is PVST? I'm quite sure I have skipped beats (was that PST or PVT?...I guess I'm no better at capital letter abbreviations than numbers). And thank you for your positive posting re: Gore Helix devices. My friend who is also about to have a device installed was reassured somewhat by that; me too (mine installed 8/18). --guitargirl
Posted 10/23/2009 12:03 PM (GMT 0)
PVST = paroxysmal supraventricular tachycardia

Posted 10/24/2009 9:19 PM (GMT 0)
Hello Everyone,

I just wanted to drop a quick note.  I'm glad to see this PFO thread is still going and people are still communicating about their symptoms and recovery.

Today is the one year anniversary of my PFO closure.  It was one year ago today when I finally got my life back, after suffering from symptoms and complications from my PFO for about a year.  I feel better than ever.  I am back to a regular exercise routine and feel incredibly healthy.  I have not gotten even a cold in the past 8 months, even though at work everyone around me has been sick with colds and the flu.  This means that my immune system is back to normal, the way it used to be before all my symptoms started, nice and strong!

I just want everyone to know that there is light at the end of the long, dark tunnel that people with PFO symptoms often have to travel.  I was so sick at the time I got my PFO closed, but I persevered and I made it!  The months before my surgery were really trying for me, as I felt sick and exhausted all the time, but the doctors couldn't figure out what was wrong with me.  Other than the period following my father's death, this has been the most difficult time in my life, without a doubt.  But, I made it, and I just wanted to share with everyone that it is possible!  I feel so lucky that I have lived to tell this story.  I just wanted to share my good news in hopes of encouraging those of you who I know may be going through some dark moments right now.  I have posted extensively about my ordeal in previous PFO threads (sorry, I don't know how to link to the previous threads). 

I wish everyone a healthy and abundant life!

Greenhope

Posted 10/31/2009 7:26 PM (GMT 0)
Hi everone, I"m new to this site and new to the life. of heart problems .I found out I had a pfo in aug. and had my closure on10/08/09 ten days before my 54th birthday.We found out about the pfo becauce I had a TIA mini stroke .8/7/09 .I was very lucky to have no lasting problems from that stroke.But that lead my Dr. to look into the pfo . I have had headachs for a very long time and tried so many diffent treatments with no luck.I 'm feeling much better now 3 weeks after the closure. I would like to start to work out a little but I,M a fraid to it has been so long since Ihave been able to.   thanks winter

Post Edited (winterwhiteut) : 10/31/2009 1:54:56 PM (GMT-6)

Posted 11/2/2009 12:29 AM (GMT 0)
I had my PFO repaired 9/29/09 and feel like a new person. I haven't had a single migraine and prior to the surgery I had them everyday. The only problem I am having is when I got to bed at night I am having the sensation of skipped/missed beats and a little trouble breathing. If you look up the side effects of Plavix it can cause this. I am scheduled for my check-up with Cardiologist in 2 weeks! I have so much energy and not having any more migraines is wonderful. I had the Amplatzer Cribriform device implanted.
Posted 11/5/2009 7:37 AM (GMT 0)
Hello! I am new to the forum, but have found the posts here very interesting. My 18 year old daughter had a stroke in May this year, she was unaware that she had any health problems and was at school when it happened.
She was given a mass of tests to try to identify the cause of her stroke, but everything came back as normal apart from showing a "tiny" PFO, which we were assured affected about 25% of the population.
We saw a consultant at Harefield hospital, who recommended a closure and the procedure was carried out two days ago (almost 6 months post-stroke). The hole was 14mm, which we're told is quite large.
So far, all has gone well. She was given a general anaesthetic and, apart from some bleeding from the groin, there have been no problems - not even bruising! She's been told to resume normal acitivities such as gym after a week and to expect some palpitations as they are a common result of this procedure.
Unfortunately, the stroke has affected the part of the brain that controls communication, so my daughter has limited speech and cannot read or write fluently. Nobody is really sure what the prognosis will be. She was due to be at Uni now, so we're going to defer that and see how the rehab goes.
She was adamant that she wanted the PFO closed, I think it has given us some reassurance that her risk of stroke is lower.

Good luck to everyone here, it's good to know that we aren't alone!
Posted 11/9/2009 4:01 PM (GMT 0)
Symphony,

So sorry to hear about your daughter. I hope she will make a full recovery. My PFO was closed 9/29/09 and I feel great. I am glad I had it done. The Cardiologist used a 24mm Amplatzer multifenestrated Cribriform device. I am migraine free and he told me I was lucky not to have suffered a stroke. I had a hole that had multiple holes around it. He said that was a worse case scenario than having one hole. I am nearly 100% since the procedure. I am having the feeling of skipped heartbeats that the Dr said were nothing to worry about. I hope others will learn about PFO's. The Amplatzer website has a video you can watch of the device being implanted and the definition of PFO.

Good luck!
Posted 11/10/2009 7:15 PM (GMT 0)

Hi everyone, new to this forum and am so happy I found it! My husband (31 yrs. old) had a stroke almost 4 weeks ago. Same story as most of you on here, in good health, no other circumstances, except a PFO shown during a TEE. He is currently on a heart monitor to verify no rhythm issues and our biggest decision - do we close the hole?

They are telling him right now it's <2mm in size, but I noticed that a lot of people are told that and find out it's a lot bigger. Also recently found out he has the tunnel PFO - Dr. said it isn't impossible, but takes a bit of time and more patience on his part.

We're in CA and our Dr. has done 100 of these without any problems. He would be using the Amplatzer device due to this being a 2nd generation device and him having the most success.

Looking for individuals that have had the closure for a longer period of time, if you're out there. Any extenuating circumstances/problems?

Husband currently is on 325 mg asprin and zorcor. Chlosterol isn't out of control, but this is the therapy chosen for the time being...

Posted 11/11/2009 2:31 PM (GMT 0)
Hello everyone!
I am a 37 year old Army Officer with 15 years of service and two combat deployments. I am in fairly good physical shape and have been able to meet (exceed) the demands of full time Military service. In June I had a stroke while on leave. The stroke occured at 0630 in the morning. I had just completed a 6 mile run and a short cool down swim. My symptoms were alot like vertigo, severe diziness, lack of balance and uncontrollable vomiting/sweating. Emergency room Doctors diagnosed vertigo because nothing showed up on the CT scan. my 3rd day in the ICU, my wife fired my DR, and hired a nuerolgist who did the MRI and found the stroke. on day 5, the cardiologist found the PFO after DOPPLER etc failed to find another cause. I had my PFO closed at ST. Thomas Heart Hospital in nashville TN on 22 OCT. My DR put me under anesthesia and implated the Amplatzer through trans catheter. The entire procedure was less than thirty minutes, I slept for around 3 hours. I was discharged the following day. I am fortunate to have no side effects from my stroke. I was up and walking less than 2 hours after the procedure, and began exercise the day I was released. I am now jogging around 6 miles per week and am increasing the distance in small increments. I feel great. I am on Plavix for 6 months and expect to take aspirin for life. There have been no after effects, and I can do everything I could do before. I am shooting for my first post op marathon in the fall of next year. Although I do not recommend having a stroke to anyone :-) I can say that the procedure has done alot for my confidence. I do not have the same anxiety of a repeat as I did before the procedure.
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