HealingWell
Search Close Search
☰

PFO Closure - Open Heart or Transcatheter 2

Support Forums
>
Heart & Cardiovascular Disease
✚ New Topic locked
1 2 3 45 6 7
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/27/2008 2:13 AM (GMT 0)
Hello, I am so happy to find this forum. I am recovering from a PFO closure on 5/24 and the side effects that I am having is similar to one having flu symtoms but with normal temperature. Has anyone felt any sensations like that? I am currently on Plavix and aspirin. Let me go back a few months, I found out I had a hole in my heart after a mini stroke. My surgeon gave me the option of therapy or having the closure done and I chose the latter because I am about to become 51 and felt that now that I have medical coverage I decided to go ahead and get it done. I did a TEE and the doctor did not like the amount of blood gushing out of the hole and decided to perform emergency surgery. I have this ongoing heavy feeling in my head and do not know what to expect.
Posted 8/4/2008 9:48 PM (GMT 0)

VN2000 said...
I don't have any idea why they denied it. I have Cigna and I believe if you have a condition then it's approved but due to the whole FDA non-approval it's in limbo land right now. The doctor has sent a written summary or report of the whole requirement and the insurance company has to review it and give another decision. I hope it goes thru well and we don't have to spend 30k out of our pocket. Can't afford it!!

Not sure if VN2000 is still around, but I posted a new thread on Cigna insurance denying a scheduled PFO closure procedure.  We are in shock right now---were only 5 days out from the date when Cigna notified us of a denial letter in the mail.


The doctor is waiting to get the denial letter before proceding with any appeal.

Just curious what happened with VN2000, and if it was ever approved!!

Four specialists (cardiologist, hematologist, neurologist, and cardio surgeon) ALL recommended the PFO closure, yet Cigna says it isn't FDA approved and that's all that counts.  Obviously, people are still having this procedure done so it is getting approved for others.

Any one with suggestions or experience, please feel free to respond!


JR

Posted 8/5/2008 2:12 AM (GMT 0)

Hello to my old friends!  Hello to the new people.  Sorry to have been away so long but funny thing is, I thought I was healed...

Then, the migraines started, again.  After the TEE in March in which the Cardiologist said the hole was closed, I thought I was good to go.  This morning the Neurologist did a Transcranial Doppler and the hole is not closed.  Turns out that while at rest, there is no shunting (minimal, anyway).  They did the Vasalva Maneuver and upon the release of exertion I am at a grade 3 shunting.

They are sending report to the cardiologist.  Venous blood is causing the migraines.  Neurologist said that sometimes the TEE shows a full closure because you are sedated and they can't simulate exertion, like blowing in the machine!!!

So, here I am, again.  I did go to London.  It was amazing.  For a couple of months, I felt great.  Sheryl Crow did a private concert for my husband's work group.  It was the best.  We were at Prince Albert Hall.  Worth the trip.

I will update as I know more news.  Hope everyone else has more positive results.

God Bless.

Posted 8/6/2008 5:46 AM (GMT 0)

I, too, was hoping for no more migraines; however, they returned with a vengeance 6 weeks after my closure.

My neurologist has me on 75 mg of Topamax a day.  The headaches have become much less frequent and severe, but I have vicodin to help out when they do arrive. 

I still get the 20 lb. weight on my chest periodically, and now am having a hard time staying hydrated and keeping my blood pressure up so I get light-headed and dizzy, especially in the heat.

What next?

But...only 3 more months on coumadin! 

Posted 8/18/2008 6:24 PM (GMT 0)
JR - I've responded to your post and I"m still waiting for them to make a decision. I had 2 professionals (cardiologlist/neurologist) confirm that this was the only solution to avoid a future stroke.

I am quite disappointed on the way it's been handled and can only pray for a positive outcome.

If I'd known that I'd get SCREWED by the Cigna, I would've joined the clinical trial being done by my doctor.

More than anything, it's FRUSTRATING.
Posted 8/22/2008 6:20 AM (GMT 0)
Hello,

I've been reading both threads on PFO Closure with great interest. I recently went to a clinic specializing in cardiac wellness and diagnostic imaging because I was feeling "sensations" in my chest. Not pain, exactly, but certainly discomfort that sometimes spread to my throat area at the top of my chest. Feeling was like--well, imagine you were impaled by a wooden broomstick, and the act of being speared caused you no pain, but you could still feel the broomstick stuck in your chest. There was often a pressure, occasionally with lightheadedness and difficulty concentrating. No migraines as others have reported here.

The doctor said I had a pretty load murmur did a 3D sonogram, initially thinking I had valve trouble. Nope. Good valves, but he's now thinking I have a hole in my heart.

I go in for a CT scan next week.

I'm gathering there is some controversy surrounding closure using through-the-vein patches vs hole-hog open heart surgery. Interesting reading.

One concern I'll need to discuss with my doctor is if I need closure. He seemed to indicate that I do (and seemed to favor open-heart surgery). I should note that this practice is not a surgery center. Reading this post I see that nearly all of ya'll who have had closures had either had strokes or TIAs, which I (to my knowledge) have not. My EKGs came back clean. I'll need to see if he still feels the same way after the CT. Not that I want to walk around as a potential stroke time-bomb in the future but I would like to know why he was so clear I needed a fix in the absence of stroke.

I would like my energy back. I'm early 40s, 185lbs, and otherwise pretty healthy. Along with the chest discomfort I also lack the normal stamina for someone my age. I find myself taking the elevator rather than stairs in the 2-story building where I work and seem tired all the time, most embarrassingly nodding off in meetings.

This board is a great resource. I can get the sterile, clinical facts a lot of places but here I can learn from the experience of people living with PFOs.

It's all been a not-so-fun surprise, so I'm a little nervous but won't be too anxious at this point as I still don't have a lot of details.

God bless.

Post Edited (digitalHippie) : 8/22/2008 12:23:22 AM (GMT-6)

Posted 8/31/2008 2:51 AM (GMT 0)
Hey guys,

Thanks to all the posters. I'm new to the forum, 40 years old, had a stroke last month, and was diagnosed with PFO+ASA. I'm still trying to weigh all the factors in making my decision to close or treat. Having spent most of the morning reading all of the previous posts, I have to say thank you. Before asking any questions about myself however, I wanted to contribute a few thoughts from what I've read...

For the poster who asked about flying, you should be just fine. If it's a long-haul flight (i.e. 5 hours or more), then the only concern I'd have with a PFO is the development of a venus thrombus which could jump the PFO and make its way to the brain. So walk around during the flight, move around in your seat, and I'd consider maybe taking an extra full aspirin in advance of the flight.

Also, my understanding of PFO is that it is usually not open all the time. From what I understand, it's similar to a "flapper valve". Basically, think of a big heavy rubber shower curtain slung up and covering an open doorway. On a normal day, the air would remain relatively calm and thus the big heavy shower curtain would just sit in place, and keep each room's airflow separated. But slam the front door, run down a hall, or open a window, and that heavy shower curtain might just move out of the way suddenly and presto, air would then momentarily slip from one room to the other. I think a PFO valve is similar, only its guarding the "door" between the atrial chambers, and instead of air of course its dealing with blood. All it takes is a sneeze, a cough, a heavy lift, etc., and it momentarily will open and allow a shunt. Is this accurate or are/were you guys experiencing continuous shunting? Was shunting a factor in your decisions to close?

As far as the "to close", or "not to close" decision...

1. Has anyone found any hard statistics on our odds for a secondary stroke when weighing the treatment route vs. the closure route. I'm looking for a breakdown of younger stroke victims experiencing a cryptogenic stroke event who have had a return attack. Can't seem to find the data on the web.

2. For those of you who chose to close, were you first time stroke victims or multiple? And what was the severity of your shunting? Do you regret the decision?

3. I have read a lot of your post dealing with irregular heart beats, but what about atrial fibrillations, or any other adverse effects? Did the doctors give any stats on what the success factors where?

4. Are you having to take any precautions for Endocarditis long-term? In other words, are you forced to go on antibiotics frequently or was this just around the PFO closure period?

5. Has anyone chosen the treatment option? Does it drive you nuts, that you might have a secondary event?

Thanks in advance for all the answers! :-)

Post Edited (Orangebelly) : 10/21/2008 6:46:25 PM (GMT-6)

Posted 9/2/2008 4:30 PM (GMT 0)
Digital and Orange,

Thanks for posting your thoughts/questions and keeping this forum alive.  It has so much good information for people dealing with a PFO and closure options.

The description of the PFO flap, Orange, is exactly how I understand it works, although our doctor mentioned shunting even when at rest according to some tests.  Not sure if this is correct.  I guess what I don't quite understand is that someone can go 30+ years (or longer) without an incident/stroke/etc. and then suddenly it happens.  It almost seems like the PFO flap stayed in place for the earlier years and suddenly "came loose." 

We are finally on track for the PFO closure.  CIGNA Insurance denied the pre-certification claim a few days before it was originally scheduled (after approving it at first).  So we had to reschedule once CIGNA reversed its decision---they now say they WILL pay for it.  But it delayed us over a month, due to work schedules, etc.  Being on Coumadin seemed to work okay though, although there was an additional TIA after about 6 months on the medicine.  That was the ultimate reason we & the doctors decided to close--along with the constant uncertainty of when the flap might "open" again at the "wrong" time!

Good luck to everyone.  It is not an easy thing to deal with.

And thanks also for the thoughts concerning airline flights.  Obviously, as a pilot, you certainly have some experience with that!

JR 

Posted 9/4/2008 12:16 AM (GMT 0)
Hi again Orange...

We are in Dallas, having the procedure done in about 3 weeks. We considered Seattle (do a lot of work there) but since DFW is home we opted for this area.

As far as the lifespan of the device, it hasn't been directly discussed. I understand that tissue grows over it almost immediately, so that it basically becomes "one with the heart." At least, that's what we have been told. So I would hope--with tissue around it---the device will stay in place indefinitely.

I also make the assumption that if something DID go wrong with it, open heart surgery is the result. According to what we have read as well as what our doctor has said, with the open heart procedure, they simply stitch the hole shut. 100% accuracy. I would think that if the device went sour, the same surgery would be able to correct it.

It's all somewhat ambiguous, to be honest. But the idea of leaving the hole there to cause another stroke just doesn't seem smart. I understand that this procedure is done regularly in other countries, but the insurance companies in the USA don't want to pay for it on a massive scale; thus, there are hoops to jump through before it is approved by insurance here.

Keep me/us posted on what you decide. Best of luck to you as well. At the very least, you are aware of the PFO and can act accordingly. Since PFO's are so much more common than I ever imagined, there are plenty of people out there who DON'T know they have the issue---who knows when or if it might "strike" them.

Again, best of luck.

JR
Posted 9/4/2008 6:12 PM (GMT 0)
Hi, I was told that I have ASD (intraatrial septal aneurysm defect) and I get alot of pressure in my chest with light head, and it feels like it goes up into my throat. I have a appointment sept 10 and I don't know how big the hole is. I have some of my paper work from the doctors but don;t understand it, could anyone tell me what to look for the size of the hole or do they have to go in first then they could tell. Thanks
Posted 9/5/2008 3:28 AM (GMT 0)
JR,

I think you're on the right path. The major complication rate for the installation of an occluder is about 1.5% vs. 1% for staying on warfarin or aspirin. There is a higher minor complication rate of 7% for the occluder, but again these are minor and include first generation occluders which are no longer used. From what I understand once the occluder is covered by heart membrane, you're home free. I think this takes about 3-6 months?

Post Edited (Orangebelly) : 9/23/2008 11:16:00 PM (GMT-6)

Posted 9/5/2008 3:35 AM (GMT 0)
Sheba,

I really don't know that much about your condition.

As far as the size of the hole, there should be some sort of estimate in your history. I do know that sometimes when you request your records from the hospital, you'll be issued an "abstract". This is usually a detailed summary of your medical records, so if you have that in hand you might not have a specific class of shunt mentioned. I don't think its so much the size of the hole but the level of shunting (blood transfer) which is important. Your consult with the doctor should expose much of this.

I found it interesting that in the PICS study, patents with a smaller PFO exhibited almost twice as many stroke/TIA events as did those with a large PFO.
Posted 9/5/2008 12:36 PM (GMT 0)
Thanks Orange,

(A PFO is like a leaky tunnel; an ASD is an actual hole.)

All I know is that the doctor told me that a cough or snees could cause a stroke anytime. And from what I read on here it makes me nervous to get this done. In my paperwork it says that there is significant intracardiac shunt demonstrated with cough and valsalva maneuver, showing evidence of right to left shunting. What I do know is this...A aneurysm in there , a hole where the blood is going from the right to left with significant flow into the left side of my heart and lungs , my left side of my heart is enlarged due to the overwork, the two lower valves have a trace of mitral and tricuspid insufficiency. The doctor found all of this on Aug 5 and then he called a doctor the next day in Syracuse, NY and I thought that I would of had it done asap but someone dropped the ball in Syracuse office. I called there on Aug 27 they said that they didn't have me in the system., my husband called the next day and all of a sudden there I was in the system and they told him that the next available was Sept 26 for consultation!! I'm really starting to hate doctors. I have been getting really bad pressure in my chest and don't want to go the the emergency room just to pay another bill. I was told that they don't do that kind of operation here where i live only in Syracuse...so I wait again.. Sheba confused

Post Edited (sheba2222) : 9/8/2008 7:29:50 AM (GMT-6)

Posted 9/8/2008 1:28 PM (GMT 0)

Orangebelly said...
Sheba,

I really don't know that much about your condition.

As far as the size of the hole, there should be some sort of estimate in your history. I do know that sometimes when you request your records from the hospital, you'll be issued an "abstract". This is usually a detailed summary of your medical records, so if you have that in hand you might not have a specific class of shunt mentioned. I don't think its so much the size of the hole but the level of shunting (blood transfer) which is important. Your consult with the doctor should expose much of this.

I found it interesting that in the PICS study, patents with a smaller PFO exhibited almost twice as many stroke/TIA events as did those with a large PFO.

(A PFO is like a leaky tunnel; an ASD is an actual hole.)
Posted 9/8/2008 1:31 PM (GMT 0)
(A PFO is like a leaky tunnel; an ASD is an actual hole.)

http://uwmedicine.washington.edu/PatientCare/LOC/RHC/conditions/CongenitalHeartDisease/PFO-ASDClosure.htm

here is a article that explains the difference between the two...I learned alot from it. Sheba

Post Edited (sheba2222) : 9/8/2008 7:34:34 AM (GMT-6)

Posted 9/10/2008 3:43 AM (GMT 0)
Hi all. I had my PFO closed nearly 3 months ago. I am happy to report I haven't had a single migraine even after adding caffeine back into my diet. I had some initial palpitations and chest pain after the procedure that got better over time. I worked out pretty hard this weekend and now the pain is strong again. Has anyone else experienced this? I am wondering if the device is rubbing in some way. I would assume I would have some major symptom if the device were out of position. Any of your thoughts would be appreciated.
Posted 9/11/2008 3:18 PM (GMT 0)
My insurance claim got denied once again. The hospital authority has been very nice to be in touch with CIGNA on a regular basis. It's just very frustrating that they accept that they misadvised but they don't feel it right to pay for the procedure.

My procedure took place on January 29. And, I had my stroke on December 18 of last year. You're right  -- it's quite amazing that we survived over 30 years without any problems and all of a sudden the heart is giving us problems.

My cardiologist along with my neurologist were in agreement that I should definitely go thru the procedure as that was only reason they found to have caused the TIA to avoid any future problems. 

I have a colleague and she had some blood clots due to a knee surgery and is in the hospital going thru therapy as the blood clot caused her to have a stroke and paralyzed one side of her body. After that while she was recovering, while going thru therapy, she had another stroke to find out it was a PFO. And, now they've gone in to close the hole.  I hope and pray that she recovers quickly and request you to do the same for her. She was a healthy person 6 months ago and now she can't even stand herself.

I am thankful to God that I'm doing fine today and if I were asked to make a choice to leave the hole open or close. I'd go for closing it - for peace of mind and to know that the issue has been addressed if not anything.

I hope you all are doing fine and recovering fine. 

Please also pray for my insurance issue to get resolved! I am just frustrated and stressed with dealing with CIGNA.

 

Posted 9/19/2008 2:26 PM (GMT 0)
VN2000, I sincerely hope that you get your insurance troubles worked out. The whole thing is just crazy!

I thought I would come back and update everyone on how I am doing. I had my closure done on April 29th with the Gore-Helex device. I have had migraines since I was about 8 years old. In February I had a TIA and my PFO and ASA was found at that time. I bottomed out during the procedure itself because my veins are small and they had a hard time moving the catheters through them, especially on the right side. I also bottomed out when they went to pull the catheters. At about 3 weeks post procedure I developed non-stop PACs which my Cardiologist felt was caused by my heart reacting to the device. I had to go on 50mgs of Toprol a day to control the PACs. I am now almost 5 months post procedure and I am totally off the Toprol. Yay, no more PACs! I also have had no migraines since the procedure and my body has been warmer than it ever has been in my whole life. It could be 80 degrees out and my hands and feet would be like ice but not anymore. I finally feel good. My energy is back and I am doing great. It took a while to recover totally though. I firmly believe that no matter what the Doctors say about it being a piece of cake procedure, IT IS NOT! I sometimes think that I would have recovered faster going the open heart surgery route so I really can't say at this point that I would do it the same again. I can say though that I would definately have it closed. I could not live being on "stroke-watch" my entire life.

Posted 9/20/2008 11:12 AM (GMT 0)
Hello everyone! i have been using this forum for quite a while now, if any of the old original post are popping in to see what is being said. I would like to tell you I HAD IT DONE. Yes i finally had closure 3 days ago!!!!!!!!!!!!!!! :-) I don't know if any of you remember i should have had it done last November but couldn't because of a chest infection. It turns out it was essential that I had it done now as the hole had got bigger it was 33mm 1 and a 1/3 inches! I thought it had as i was feeling not very well at all leading up to it.

 

Are all of you that are on this thread PFO? I was ASD or am. Any way my husband last night scared me silly, he was leaning over me. I asked him what was wrong, he said For the first time ever he couldn't hear me breathing and wheezing. I must admit it is strange not having my heart beating irregular all the time. I am still get irregular rhythm but no way like before. I have soreness in my chest and i am very tired. But I feel different, I think it is probably that I am feeling nearly normal and I have never felt like that.

I was very scared before I had closure, but I knew I did not have a choice. My right side of my heart had already began to get larger, eventually my heart and lungs would not have been able to take the strain.

I have a puncture wound in my groin that has a very large bruise. As I have already said I still have irregular heart beat but not as bad as before, Oh and I can climb the stairs without getting breathless yeah

 

I have read all the threads on this topic and all I can say is if my surgeon couldn't close through my groin then it would have been open heart. I was in hospital 2 nights then home.

ASD is a open hole as someone already mentioned. Mine was quite large, so I won't know if it has been a complete success until my appointment in 3 months. (But I think it has) The scan and x ray before i left hospital showed that the device was in place and hadn't moved (that was a relief!)

 

 

www.tonette.co.uk

Post Edited (dinby) : 9/20/2008 5:27:04 AM (GMT-6)

Posted 9/24/2008 7:52 PM (GMT 0)
I have read so many of these posts that I thought I should finally add my first one.

I had my PFO closed on the morning of Friday Sept 19th. I was kept overnight for observation and was home by afternoon Saturday. I can honestly say I was scared to death of the after effects and symptoms after hearing so many with problems. Other than being very sore and bruised on my left side incision, this because it wouldn't stop bleeding after the tube was removed and the measures to stop it, I feel WONDERFUL!!!! I was back to work on Tuesday. It has been less than a week for me but my doctor tells me that normally symptoms start within the first 24-28 hours. I am keeping my fingers crossed!!

I just wanted to share my good story so that some who are undecided this may help you make a decision.

If anyone has any questions, I am more than happy to talk things through.
Posted 10/10/2008 4:42 PM (GMT 0)

I'm new to this forum, but was on the old one. Hi Dinby. I'm so glad to hear that you finally got your procedure done and are doing well.

 

I'll share my story, which addresses some questions that some of you have asked. It is long, so you can just read what interests you.

 

I am 58 year old female and had a PFO diagnosed in 2007 and underwent a PFO closure with the Amplatzer Device in November of 2007. The other interesting part of my story is that my 31 yr old daughter had a bubble echo in August of 2008 and found to have leakage. She went to the cath lab just this Monday (Oct 8, 2008) to have PFO closure the same as I did. However, once they inserted the intracardiac echo catheter, they discovered she had an ASD rather than a PFO, and although large (17mm) they were able to close it with a Septal Amplatzer Occluder.

 

RESULTS: My procedure was not bad at all. I was awake (with some mild sedation) through-out procedure and remember everything. My recovery period was short. One week after procedure I went Christmas shopping. In my case, my color was immediately better (I had always been very pale) and my energy and stamina improved within days. I was on Plavix and Aspirin for 4 months, baby Aspirin for the next 5 months. Now I don't have to take Aspirin unless I just want to. My bubble echo at 4 months showed no leakage at all. My headaches are 80% improved. I've had the occasional aura migraine (but I can usually attribute it to a trigger--low blood sugar, lack of sleep, etc). I have not had any TIAs and don't have the weird neurological spells. My raynaulds is improved but not gone (my hands and feet no longer get purple, they get red when I'm in the heat and get pale when I'm cold). My energy and stamina are much, much better than before. I feel like I have my life back. My husband and I just returned from a week with my daughter, son-in-law and 18 month old granddaughter at Disney World and I kept up with them. Before the PFO closure, I simply could not have gone. Of course, my fibromyalgia is still there and so are some of other chronic problems I have that are not related to PFO, but now it seems as though my body is better able to compensate. I am a new person!

 

As for my daughter. She came through the procedure without a hitch. Absolutely no problems. She feels fine and our biggest problem is convincing her to take it easy for a few days. She is a pharmacist and is returning to work (with her Doctors permission) on Sunday.

 

SYMPTOM DETAILS: MINE: I never had an actually stroke, but turns out that I had frequent TIAs from age 20 until closure of my PFO but they were blamed on migraines and never seen as TIAs until the cardiologist diagnosed my PFO.

 

I have had symptoms since my late teens--which were blamed on migraines. I had frequent aura migraines, palpitations, near syncope (fainting), several neurological weird events including a dilated pupil for 24 hrs, not being able to say what I was trying to say, brief episodes of partial loss of vision, weakness, exercise intolerance, heat intolerance, raynaulds--cold feet and hands, foggy head and just feeling like I was in la la land. Up through my 40s, I just pushed my way through it. It was normal for me. I worked full time as nurse, raised 3 children, slept around 5 hrs a night and was always on the go. I just dealt with the symptoms when I had to and kept going. Then I hit 50 and it was as though I'd hit a brick wall. I absolutely could not push my way through it any longer. My energy level and stamina bottomed out and stayed bottomed out. My neurological symptoms increased to the point of feeling transient weakness and numbness in varying places on my body. I was diagnosed with fibromyalgia and told the rest of the symptoms were related to my migraines which by now were a major problem. I begin to have daily headaches. Finally, at the advice of my physician, I was forced to take medical disability and quit work at age 52 (something I never dreamed I'd have to do. I loved being a nurse and was a workaholic). The most frustrating thing was that I knew that most of the doctors and other people for that matter thought I was just being a hysterical post-menopausal woman and really didn't have all those problems--that a lot of it was in my mind. Knowing that people view you that way and the inability to find an answer may well be one of the worse things about having PFOs.

 

My PFO was diagnosed when a cardiologist (I was seeing for another problem) followed a gut instinct and ordered a bubble echo. The medical center where I live participates in the Migraine/PFO clinical trial so I was referred to the cardiologist who is the investigator with that trial. I did not join the trial, but he told me that my PFO was big to the point that I was shunting (leaking) blood from my right atrium to left atrium even at rest--basically with every heartbeat. After taking my history, he told me I'd been having TIAs since my 20s. I wanted to hug his neck. Finally someone who not only believed me, but was telling me he knew exactly what my problem was and how to fix it.

 

MY DAUGHTER: She has had aura migraines (without much of a headache--primarily the weird visual things) since about 20. I didn't realize how symptomatic she was until this summer. We were on vacation together and she had an episode when she had complete loss of vision for about 2 minutes. When I questioned her, she admitted to having partial loss of vision from time to time and that she had dizziness upon standing up too quickly, etc. She also admitted to be short of breath her entire pregnancy and that she was overly tired her whole pregnancy although her blood work was fine and she had worked out on a regular basis before pregnancy. Seemed she also had shortness of breath with stair climbing, exertion, etc. She also has raynaulds. After the vacation episode, I scheduled her to see my cardiologist which is how she was diagnosed.

 

The main thing I looked for when evaluating having the closure was a physician that is very familiar with PFOs and who has done a lot of closures. My physician has become very interested in PFOs and ASD. He thinks that they are much more of a problem with adults then the medical community has recognized and is setting out to gather enough data to demonstrate that. He suspects that a lot of complaints that adults (especially women have) that are dismissed as being hysterical or just an over-complainer are in fact undiagnosed PFOs. As a matter of fact, the nurses told my daughter that physicians from all over are now coming to work with him to learn about doing the closures.

 

I can tell you that you won't find much if anything in the line of statistics. There just hasn't been any research done because it hasn't been on the medical community's radar screen. Also, closure with devices are new (I think closures with devices for ASDs have been done for a longer period of time--but the devices were different) so no one knows about long term affects. That lack of knowledge really bothered me, but I felt I had no other choice. We are just going to be the early statistics. I can tell you that I DO NOT REGRET HAVING IT DONE. I AM VERY THANKFUL, IN FACT.

 

Good Luck to all.

Posted 10/11/2008 9:38 PM (GMT 0)
Hello everyone.  I am a new member of this forum although I have been reading all the PFO threads with great interest over the past month or so.  I want to say what a great source of moral support and inspiration ALL of your stories have been, both the good and the challenging ones.  At least I know some of the things I can expect when I have my PFO closed the week of October 20th.  I also feel that I have finally come across a group of people who understand exactly the difficult journey I have been traveling these past few months.  For a while, I also thought I must be going crazy or making up my symptoms because the doctors could not find anything wrong with me!!!  And some of them did make me feel like a hypochondriac female, even though I have been healthy and in excellent shape all my life!  Thankfully, I trusted my instincts and I persisted and it turns out that I was right.  I am very sick, my PFO and ASA have caused complications and I know that the PFO closure is the only option for me at this point.

I will share many more details of my story in the days and weeks to come.  I finished the first part of the journey, which was figuring out what was wrong.  Now, I move on to the next phase of this odyssey which will be the PFO closure procedure and its aftermath.  I just hope I get my energy back.  But, I wanted to thank all of you who have posted for making my journey a little easier and for making me feel less alone and better understood.  I have also found 3 excellent doctors (cardiologist, neurologist and pulmonologist) who GET it, who see my tests, know something HAS to be fixed and they want to do it as soon as possible.  My first set of doctors did not GET it, they thought I had one migraine with aura and they were going to leave it at that!  Thankfully, after many tests, better doctors through second opinions and much persistence on my part, we have figured out the problem.

Once again, thank you for your words of encouragement.

Posted 10/12/2008 2:12 AM (GMT 0)
hi everyone i'm new here...i just turned 20 and just found out I have PFO...i was a ballet dancer in college until i was having complications due to the PFO and had to stop...i'm starting a new school for aesthetics and massage therapy the second week of november and i meet with the doctor to schedule the operation end of oct. and since i can actually delay my start date at school (since it's beauty school) i was wondering if i should...once i start school i can't miss any days due to the fact they monitor your progress towards graduation in hours of training...i can't even take off for my own wedding we have to have a late ceremony because i have school from 8am-4pm...but anyways...i'd have the surgery hopefully a week before school starts. Is that wise? should i talk to administration and ask to start with the next class a month later or the class after that two months later? Plus I'm supposed to get married either december or january but wont know till about a month before due to the fact my fiance is in the military and they don't let them know when he can get leave for about 3 weeks from today. what do you guys think i should do with scheduling my surgery or school? Whats the recovery like?
Posted 10/12/2008 7:14 PM (GMT 0)

Hi, Katie G, welcome to this forum.  I am a new member myself, but I have found it to be an incredible resource in the past month or so.

I can just tell you what I am planning to do, since I have not had the procedure done but I am scheduled for the week of October 20th.  I am hoping for the best (quick recovery), but preparing for a slow recovery just in case.  I work full-time and I have mentioned at work that I may be on short-term disability for up to a month if necessary.  I have always been one to push myself, but I know this is one time when I have to take it easy and make sure the recovery is successful.  I'd rather take it easy than push myself too hard and go back to square one.  Of course, you are very young and in excellent physical shape I am sure as a former ballet dancer, so this enhances your chances of a quick recovery.

Let me tell you a little bit about myself and my situation so you can compare notes and maybe help you make a decision.  I just turned 40 and have always been an extremely healthy person.  I have always kept myself in shape - I have been running for the past 25 years as part of my healthy lifestyle.  I have also taken many forms of dance throughout the years because I find it a fun, creative and beautiful way to exercise (Samba, Flamenco, Modern, Jazz, etc.), but never ballet!  In the past 3 years I have taken on long distance running (marathon training) just as a challenge and change of pace to my running routine.  I eat very healthy and in fact, when they did one of the zillion tests I've had done to figure out what was wrong with me, the technician commended me on my healthy eating habits because she said my arteries were completely clear of any plague...  it was a proud moment in a very difficult past few months!  So, as you can see, I've always been healthy, I hardly ever get sick and was very proud of this fact as I was reaching the big 40 mark!

Now we back track to July/August of '07.  I started feeling some chest pains and I just did not feel right.  I went to see a cardiologist that my younger sister recommended (she has some other congenital heart defect).  Heart disease runs in our family, as my father died of a fatal heart attack when he was 58 and my mother had a mild stroke less that a year after that (this was about 12 years ago and is one of the many reasons I take such good care of my health).  about 8 years ago, I went to see this same cardiologist as a preventive measure.  All he found was a murmur, Mitral Valve Prolapse, but I had no symptoms at the time.  He told me to keep doing what I was doing (eating heathy and exercising regularly) because it was working and it reduced my risk of heart disease from high to medium as a result (it is automatically high because of family history on both sides of the family).  So that was that and I never went to see him again.  But 8 yrs. later, I started feeling tired and had the chest pains and I went back.  He did an EKG, some blood work and even a stress test and they all came back fine.  He said, "You are young and healthy.  Continue doing what you are doing, keep exercising, you are fine, there is nothing wrong with you."  Nobody wants to be sick, least of all me, so these were the words I wanted to hear an wanted to believe, so I did.  I started training in early Sept. '07 for the ING Miami Marathon and completed it in January.  Throughout the training, I did feel a little more tired than in my previous training round, but I attributed this to getting older, stress, trying to fit too many things into my busy schedule, marathon training being very trying on your body, etc., etc., etc.

But, what started getting my attention was that I was coughing a lot.  In January '08, a couple of weeks before the marathon, I developed a really bad cough which turned into an upper respiratory infection, but I pushed through it like a good marathoner and I did and finished my marathon, coughing and all! (For the record, I am not a competitive runner, I run for fun because I love it and it is a wonderful stress reliever for me.  Marathon training was just a way to add some "spice" to my running routine).  After I completed the marathon, I continued exercising but noticed that I was getting tired much more quickly.  A second round of bad coughing/sinus infection developed in March.  And a third in May.  And throughout this time my energy level started to plummet.  This is when I KNEW that something was wrong.  But, just in case I needed more convincing, on April 29th I partially lost my vision in my right eye (it was like a cracked mirror and I could not read the computer screen at work anymore) and a little on the left, my right arm when numb and I was confused for a few minutes.  My vision came back, though blurry, about 15 minutes later.  Get this, I DROVE MYSELF to the emergency room!  I have since been advised a few times by a few doctors to dial 911 immediately.  In the emergency room they did a CT scan (by this time it had been about 3 hrs. since the initial event) and took my vitals.  Everything came back fine.  I was kept for observation but was advised to go see a Neurologist.  My instinct told me that something really was wrong and I needed to take care of this.

So, this is when I started my serious quest for what could possibly be wrong with me.  I will spare you too many more details since I have made this e-mail way too long already, but I thought it was important to share, especially those of you who are still weighing your options.  (ORANGEBELLY, I read your original post from August 30th - I don't know whether you have made your decision, but this is my story in case it helps you).

My first series of doctors originally thought it was just a "migraine with aura" and they wanted to leave it at that.  But, I persisted, I knew there was something terribly wrong.  I was experiencing constant fatigue, shortness of breath, dizziness especially toward the end of the day, coughing, just to name a few.  In fact, I have not done ANY exercise in the past 4 months because I feel so tired.  I can barely get up to drop off my 16 year old son at high school and go to work.  I come home and I HAVE to lie down because I am so exhausted.  And, some days, I have woken up feeling so tired that I have not even been able to go to work!  "Migraine with aura"?  I don't think so, especially because I have never suffered from migraines in my life.

I subsequently practically had to push my first cardiologist to do an echocardiogram with bubbles, which revealed the existence of a hole, bubbles were passing back at forth even at rest.  I then had a transcranial doppler which revealed again lots of interatrial shunting even while at rest - the TCD revealed mostly right to left shunting (this is what they call the movement of the blood from one side of the heart to the other.  The TEE (transesophageal echocardiogram) revealed that my PFO is small, but that there is LEFT to RIGHT interatrial shunting (the opposite of what the other test revealed).  In any case, they tell me the hole is small although nobody has given me the exact size yet, but there is a high level of shunting which is bad and is what has caused all the complications.  The brain MRI revealed that I had a mild stroke on 4/29 not a "migraine with aura."  For a few weeks after this event, my right arm was weak (I could not open jars for example), my right shoulder and foot would ache often, and I lost some memory for habits.  There is some minor damage to my right frontral lobe which is where the memory for habits is stored so this makes sense to me.  I feel almost 100% now since that event, my right arm strength is back, I feel less memory loss, etc.  I still want to go back and have my second neurologist do a more extensive brain MRI to see my "history" since I think I've had several TIAs leading to this event.  I see that some of you are able to determine how many TIAs you have had, so I need to find out what type of MRI this is (I know there are several) so I can figure this out.  If anyone knows, I would appreciate it if you could tell me.  Otherwise, I will ask the neurologist at my next visit.  I do feel like a walking time bomb in terms of having another stroke, which is one of the main reasons I am having my PFO closed.  "Left to right" shunting causes the strokes/TIAs because blood clots bypass the lungs and make it to your brain.

The TEE also revealed lots of other goodies which my first cardiologist failed to mention.  Needless to say, I have since switched to a superior doctor, who is also an interventional cardiologist.  A word of advice: always ask for copies of all your tests before you leave your doctors' offices.  This way when you are asking for a second opinion, you don't always have to have the tests done again.  The doctors can just read the results of the tests you've already had done.  This is what I did with my second cardiologist and my pulmonologist.  Of course, the cardiologist who is going to do the procedure also requested that I get a CD copy of my TEE because he wanted to see the actual test itself.

My second cardiologist told me that I have atrial septal aneurysm (ASA) which also puts me at higher risk for stroke.  Another reason I am having the PFO closure.  He told me this from just reading the results of my test (TEE) from the hard copy I gave him during my first visit.  Why the first cardiologist did not tell me this still baffles me.

My pulmonologist (whom I instinctively included in my list of doctors to see because of the unusual coughing and recurring respiratory infections) said that the right side of my heart was starting to fail because of the high level of "left to right" shunting.  All the blood coming from the left to the right side, at a higher pressure, are causing the right side of my heart to work unusually hard.  This is causing fluid backup and my lungs were retaining fluid, hence the coughing and sinus infections.  The TEE showed that my right valve (bet. the right atrium and right ventricle) has mild to moderate regurgitation because it is unable to handle all the additional fluid coming its way.  The pulmonic valve (the one going from the right ventricle to my lungs) shows mild regurgitation for the same reason. And, I also have "borderline pulmonary hypertension" which I did not even knew existed until all this started happening to me.  Again, the pulmonologist was able to tell me all of this by just taking a few minutes of his busy time to review the hard copy of the TEE I brought with me to the consultation.  The pulmonologist said that he "strongly supported" my decision to have the PFO closed since this situation "can get worse."  I think it was his very nice way of saying that it WILL get worse unless I take care of it as soon as possible.  The second neurologist also said, after reviewing all my tests that this is what should be done and as quickly as possible.  And, of course, my second cardiologist is in complete agreement.  Therefore, case closed, PFO closure it is.

I am sure many of you can imagine how devastating this has been for me.  I have gone from leading a very active lifestyle to being almost a vegetable because of my constant fatigue, shortness of breath, dizziness, lightheadedness, etc.  I know the PFO closure is another step in this difficult process, but for me, there is no other option.  I have always been very optimistic, and my great hope is that after this procedure I will regain my health again.  Of course, I am not expecting magic.  I am realistic and I know that healing is a process.  I may not even be able to run marathons again, but to at least be able to run again is something that I am so looking forward to!!!  I am going to leave the emotional and psychological journey for a future e-mail, since this one is too long already, but I hope my story will help and inpire others, just like reading so many of your stories has helped me through this incredibly difficult time in my life.

I will be happy to answer any questions anyone may have. 

Quotes to live by:

"That which does not kill me makes me stronger." 

"He who has a WHY to live for can bear almost any HOW." ( both quotes by Nietzsche)

 

Posted 10/13/2008 12:40 AM (GMT 0)

Katie G.,

GreenHope gave you some very detailed information which certainly demonstrates her ability and wisdom to educate herself and also that she NOW has a physician that talks to her, but most important listens to her.

Please read my 10/10 post (from MiMIFlo). In regards to recovery time, everyone is different and physicians often have different post procedure instructions. But, I can tell you the following:

I was 57 years old when I had my procedure and not in good health. My energy level and stamina were much like GreenHope described herself. I'd gone from someone who'd been known as the one who was still going when everyone else had fallen by the wayside to having very little energy and stamina to even do the activities of daily living. My physician's limitations were not to lift anything heavier than 10 lbs for about a week after my PFO closure. However, I had decided that I was going to give myself longer and stricter limitations than my physician did simply because these procedures don't have any long term statistics and I figured better to be safe than sorry.

But, the procedure itself really was a fairly simple procedure and the physician had no problem inserting the device. The ONLY problem I had was that I continued to bleed from the femoral vein (which is where the catheters are inserted) after the procedure, requiring me to lie flat for an extended period of time. That wasn't much fun. And I did actually end up with a blood clot at the femoral vein insertion site, but that was because when I was continuing to ooze several hours after the procedure, the resident held too much pressure for too long. Therefore, I had restrictions related to the bleeding into the tissue around my insertion site and the blood clot, but that is highly unusual and I've not heard of anyone else who had that problem. We have a family trait of bruising very easily and I bled excessively after childbirth, etc. So, my problem was more specific to me and a resident who was still a bit green behind the ears. However, the clot has resolved without problems and I was Christmas shopping within a week of my procedure (granted it was before we realized I had a blood clot). But, the point is from the PFO closure, I felt MUCH, MUCH better after the procedure than before the procedure.

Please, also note that my 31 year old daughter just had an Atrial Septal Defect closed this past Monday (Oct 6th). Atrial Septal Defect, referred to as ASD, is closed essentially the same way a PFO is closed.  Her ASD was quite large but her procedure went great. She felt great. She has an 18 month old very active baby. I stayed with her during the day last week to help with the baby. For a couple of days she was a bit more tired and she felt lightheaded when she stood up. However, no other issues. Her discharge instructions were that she could lift her 26 lb baby after 3 days and she could go back to work after 4 or 5 days. She is a retail pharmacist and she worked 12 hrs today as her first day back. She said she felt great--no problems at all. She also started lifting the baby again on Saturday and reports not having a problem with that at all. I personally wanted her to wait a little longer but her physician said her restrictions for lifting were only 3 days because she could not dislodge the device.

Since massage therapist will require some physical exertion, you may need a little more time off, but that is something you should ask your physician. Typically, they tell you to return to normal activities within 3 or 4 days.

Can you get your procedure scheduled any sooner? I'd get it done ASAP so you'd have a longer time in case you need it.

But you are young and I was 57 and "worn out" from raising 3 daughters and working as a nurse for 30 years--plus I have several other chronic conditions, not to mention the PFO that had been causing problems all my life, and I felt like a new person and had a very short recovery time.

Everyone is different, but I hope this helps.  I'll be glad to answer any other specific questions you have as best that I can within my experience with this problem. 

Good Luck.

 

✚ New Topic locked
1234567