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Correlation between PFO symptoms and super active lifestyle?

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Posted 3/12/2009 9:00 PM (GMT 0)
Tom, I'm sorry to hear that you are having problems. I had my PFO/ASA closed last year and it was covered through my insurance. I had only one TIA. I don't know if the addition of the ASA made a difference though. Neither of my doctors [neurologist and cardiac surgeon] ever said they thought there would be a coverage problem and neither did my insurance company.
Posted 3/16/2009 1:37 AM (GMT 0)

Hi Tom H,

I'm sorry to hear your latest news.  I think usually a PFO with an ASA is covered by insurance here in the US (although normally it is true that the prerequisite is at least 2 TIAs, but the ASA may make the difference because it puts you at higher risk of having a stroke).  If I were you, I would seek a second opinion from another doctor.  If you can, get a cardiologist who works in a hospital - I get the feeling that it is easier for them to get approval for certain procedures.  Also, if you are in an area that has a well known cardiac center, I would try that as well, especially if they are known for their interventional, state of the art procedures.  They may know of ways to help with the approval process.  I "lucked out" and ended up at one of these centers in my area.  I think they have more experience in getting around insurance hurdles. 

Good luck and I hope you will keep us posted.

Greenhope

Posted 3/19/2009 2:25 AM (GMT 0)
Catmom5 and Greenhope thanks for your response & support again, you have both been great. I am going to Boston the first week of April to see the original Doctor who looked at me when I had my TIA. I hope he has better news for me than my doctors here in New Hampshire.
Posted 3/29/2009 9:42 PM (GMT 0)
Hello, not sure if this thread is still going. I was diagnosed with PFO recently after looking into every possible thing that might be causing my problems. I have lesions on my brain and also had an acute attack of ischemic colitis. I am VERY active. I run about 35 miles a week. I have two children and the problems started during my second pregnancy. Unfortunately I have also developed neurological problems that make me feel confused, disorganized, disoriented and forgetful. I am still in the stage of figuring out what to do. My heart doctor wants to move forward with the procedure and my neuro still thinks that it might be something else causing the problem. I have a "size 4" hole. Does any one know what that means? when the transcranial doppler was done I know that it showed about 350 bubbles going through. Is this very large? Has anyone had the surgery and regretted it? Any athletes no longer able to race or train?
I have been trying to comb through the site however one of my problems is reading now. I used to be very sharp and now feel like an elderly person cognitively.
Thanks for any help.
Posted 3/30/2009 4:12 PM (GMT 0)
Hi Guys, sorry to throw a spanner in the works, but my symptoms didn't worsen until last year. And I've spent 43 years being fairly inactive due to other health probs ( poor vision and low muscle tone) Interesting thought though came from my mother "Your migraines didn't start until the ENT specialist taught you to do the val salva technique for your blocked eustachian tubes" I have done this almost daily (if not more often) since I was 12!!!! Is this a possible reason (excuse LOL) for my inactivity as it was worsening the asd/pfo problem from the start??? I'm so glad now I had 3 caesarians and avoided labour and I never really picked up my kids from the floor very much because I always felt a little weird. I've always had postural hypotension and frequently scare the nurses in hospital with how low my blood pressure goes!
Posted 4/1/2009 2:40 PM (GMT 0)
I am in the same boat as you Tom as far as the AMA and their stipulations go. I have a significant PFO, ASD, a right to left shunt, and some other "minor" defects. I have lost partial vision in my left eye and have two small brain lesions on my MRI (the doctors don't know why, they think it was due to a migraine). I am an otherwise healthy and active woman in my early 30's. I experience extreme fatigue, heart palps, occasional chest pain, and have recently suffered some seizures. They have no cause for the seizures and even with all these symptoms the doctors are not sure whether to close the hole or not, so they keep sending me to different specialists (neurologists, neuro-opthalmologists, etc.)

I can definitely sympathize with you and all the anxiety this situation causes. I wish I had some kind of closure, excuse the pun, to the whole thing. It is miserable to just sit on the whole situation, worrying you'll have something horrible happen. I wish you the best and hope you live an otherwise happy healthy long life!
Posted 1/26/2010 6:10 PM (GMT 0)
I am fit and I have been extremely active throughout my life, Playing all kinds of sports, cardio and heavy weight lifting) 3-5 days/wk for years, running and so on.I have been having crazy...problems, and feel like I am a 90 year old man, or like 500 pounds, and can't walk up a flight of stairs. So i got an echo WITH bubble study done after about the 5th in and out of the hospital, and yes I to have a PFO, and I am only 35. Also in the last 6 months, my life has taken a dramatic change for the worse. And I need to do what ever it may take to get it back. I am going to the Doctors today to get a C.T. scan. I am guessing they are doing all of these extra test to rule anything else out. But no matter what I know I must have this hole closed asap. Can anyone feel me in, on what is the best way to go about this? All information is very greatful. Plus it seems the doctors really don't like to close these hole in young people, and I wonder why, it took me 6 months to get a group of doctors to listen to me.
Posted 3/14/2011 3:51 AM (GMT 0)
Hi Tom...I think AGA medical is running clinical trials for PFO closures with the amplatzer device. You may want to check that out. If they don't know whether it's an ASD or PFO, can't they just list it as an ASD so that you can have closure? I had ASD closure in July 2009 with the amplatzer device. I am feeling great! I hope things work out for you. All the best.
Posted 3/31/2011 6:41 PM (GMT 0)
Had my PFO closed yesterday. Greenhope, my situation is similar. I have another genetic precursor which is I am a sickle cell trait carrier. This precursor is oftentimes overlooked as it is not nearly the problems as having sickle cell anemia. However when involved in rigorous activity there some tendencies that seem unique to the individual. Here is a list complications that I have experienced:

TIA
Hypoxia events (low oxygen)
Migraines
Severe cramping even with traditional hydration. Managed by excess hydration
Severe allergies
Exhaustion
Varicose veins

I have been an avid sports enthusiast and always pushed myself or sucked it up because I always seemed to lag behind others until my body seemed to adjust.

I appreciate you starting this discussion. Being discharged now.
Posted 4/2/2011 3:19 PM (GMT 0)
Hope72

Congratulations on your successful surgery.  Also welcome to HealingWell.  It is good to have you with us.

I had a TIA last summer and went through many tests - no PFO - which was good for me.

Kindly,

Kitt

Posted 6/28/2011 2:56 PM (GMT 0)
I feel like that there is a correlation between active life style and PFO symptoms, but in a different way. My whole life I have been tired, like really tired. I have had to take naps to function almost every day. I just figured it was just the way my brain, and body worked. I have also been really active swimming, hiking, aerobics - you get the picture.
It wasn't until I started having kids, and settling down - being less active - that my Migraines started, and that I started getting even More tired. This is when I found out I had PFO. I started exercising to help reduce my risk of blood clots, and I feel like when I am more active my headaches are not as intense and are more spread out over time, and that I still feel tired, but not to the point where I need to be in bed all day. I'm a high risk of blood clots as my Grandfather died of stroke, and my mother has already had 2, and all my sisters have clots. I feel like it's just a matter of time and I need to do all I can to prevent stroke, and exercise and good eating will help me with that. I really feel, though, that exercise is where I will find the best preventative medicine.
Posted 8/24/2011 8:00 PM (GMT 0)
I have the same story ...I was a personal trainer and a body builder. The most fit person in my family and where I worked. I was an inspiration to alot of other women. I have 4 kids and , now, 9 Grand children, of which 4 live with me . I was at the gym 4-5 days a week. I worked 30 plus hours a week plus having my children and household to care for.
We had just moved into a new house and within a month I had developed pneumonia, which didn't seem to go away. On a vacation to see my mother in Utah I became weaker . I went to her Doctor, who thought I may have an aneurism, which scared me , that is what my Dad died from. In that testing they found the hole in my heart. I was 47 years old, stronger and more active that any woman I knew. I had no idea what I was in store for.
I weighed 125 and my BMI was around 15%. I am now at 154 and I dont want to talk about what my BMI is now. I was a size 2 , I just bought a size 13. I am so down about the way I look and feel. I have gotten increasingly weaker and more tired. I have never in my life taken a nap, I used to go on about 6 hours of sleep a night, I now can take 2 naps in the day that are that long!! I care for my 18 month old twins, I have to have help some days when I am very tired.
Every thing about my life has changed, the things I took for granted are difficult now. I have a 5 bedroom house that needs to be kept clean, laundry, and I cook big meals most days. I have had to learn to cook a few meals on the days I feel well and freeze them so on the days I am so tired I have dinner. I am so lucky to have a husband that cares so much, and helps so much , even though he works 50+ hours a week, goes to the gym, and still helps around the house.
I have tried since May of 2010 to get my surgery to repair, what the Dr calls "the worst PFO he has every seen". I am scheduled for Sept 1st 2011. I have been afraid of not getting it done, I have had 3 failed oral surgeries, and a trip to the ER not breathing well with what they think is , some kind of infection.
So who else believes that working, be active and lifting affects the PFO??? I am sure of it. I was bench pressing 130lbs, when I weighed 125. Apparently that was too much strain. BUT, do I have the weight lifting to thank for showing me that I had an illness BEFORE I had a stroke , and didn't know why??? So should I be grateful that I have had a terrible year and a half that may have saved my life?? I will let everyone know how I feel after my surgery. Will I get back to the gym? Will I have my energy back? Can I help raise my 9 Grand Babies without being the sick Nana??
I HOPE!!!! idea
Posted 9/4/2011 12:30 PM (GMT 0)
I have suffered stroke and multiple TIAs before getting PFO closed this summer, and all of my cardiovascular accidents were in the aftermath of pushing myself extra hard mentally or physically.

I am a definite "Type A" personality, and if I am not accomplishing something it just drives me nuts. After all the stuff that has happened to me in the last few years as I approach the mid-century point, I am beginning to think that the "Just Do It" line of thought has come awfully close to KILLING me. I am now trying to learn how to take it easier and stop and smell the roses before the roses are growing over my grave.

Hope your surgery went well Tina, best wishes for smooth recovery!
Posted 10/3/2011 5:12 PM (GMT 0)

To all who have had experiences w/ ASD/PFO TIAS and closures. I too had been extremely active,physically fit and happy-go lucky my entire life. My 12t TIA was after a very difficult Pregnancy(unexplained bleeding,excessive wgt gain..69 lbs 0n my 110 # body), my baby was 5 months old the day I had my tia, I was in the hospital 3 days where they discovered the atrial septal aneurysm and pfo, wanted to perform open heart surgery and do a complete hysterectomy, and I was advised never to get pregnant again! Followed up w/ numerous neurologists who ask you to touch your nose with your index finger again and again, totally worthless test when you have a problem w/ your heart!?! I was desperate for another child, saw a perineotologist and got the ok, had a great pregnancy, but the TIA's came back w a vengence w/ in 3 weeks of delivery. (1999).Had to have my uterus out in '03 due to very large fibroid, tia's continued then finally had it a TEE bubble study to re-confirm ASD/PFO the cardiologist was totally mad that I remained awake durung the TEE?! Anyway, had my closure dune in Sacramento,'07, I totally woke up in the middle of surgery w/ such horrific pain, scared the doc who was sitting @ my right side watching the deployment of the device. He too was upset @ me, W-H-A-T?!? I feel absolutely,positively horrible since I had this procedure. My 2nd (1999) child has been diagnosed w/ Ehlers Danlos/marfanoid habitus becoz of a subluxated eye lense(he does not fit the profile such as michalel phelps or abe lincoln) he is not tall and thin. I too have been diagnosed w/ these syndromes. The dr's say that becoz I was so physically active in my younger years now I am paying the price w/ fractures, arthritis,bursitis, osteopenia and unrelenting fatique/exhaustion. Oh forgot to mention had to have my ovaries and fallopian tubes immediately removed last year'10 due to rapidly growing cysts in and outside of the ovaries and tubes. I don't understand any of this, is this all related to the PFO?? I also found out that I have a random loss of a chromosome @ 48, god only knows how long I've had this and none of the dr's seem concerned not even in regard to my 2 children. "PLEASE," if anyone has any input on any of these symptoms/syndromes I would truly appreciate any and all input . Anxiously await any replys, 01IRISH

Posted 10/3/2011 6:21 PM (GMT 0)
Irish,

Hello and welcome to HealingWell.  I am  glad you found us and hope some of your questions can be answered by our wise and caring members.

 

I cannot imagine how worried you are as well as frustrated by all you have going on with your health.  It sounds overwhelming and I hope you find some answers.  I do not have an answer re your cytogenetic abnormality. 

 

I am sorry to read that the surgeon/physicians were mad at you for being awake during the TEE.  I had 2 TEEs done in one day as I bit the first cardiologist and I was well medicated -  she gave up and sent me uptown to a more experienced Cardiologist.  She also stated my mouth was to small so she was unable to perform the test.  The 2nd try was a breeze. It is unprofessional for your Drs. to be mad at you. The anesthetist is the person responsible for keeping you sedated during surgery. 

 

I wish I had some first hand information to share with you and I do hope another member will be along to share with you.

 

Meanwhile, please know that I care and keep on talking with us. 

 

Kindly,

Kitt

Posted 10/3/2011 11:23 PM (GMT 0)
dear stkitt, thanx for responding. Has any one ever been diagnosed here w/ ehler's danlos/marfan syndrome? All of the symptoms including the actual PFO formation involves an issue w/ the connective tissue, which is smooth muscle and that is what the heart is made of. Even the sensitivity w/ analgesics is related to the ehler's danlos syndrome, I was tested for the vascular type and thank god every day that it came back -, thae vascular ehler's danlos is the most catastrophic. There is alot of info on the web regarding these hereditary/congenital syndromes, "IF" only the dr's would put 2 and 2 together upon the diagnosis of the actual PFO,TIA,Stroke. I look forward to more input and most importantly some answers as to the inability to walk let alone exercise and desperately want to feel better, not worse since I had the closure.Is there a site regarding PFO closures? I wonder what the symptoms of being allergic to the device would be?!? Thank you again for responding and look forward to continuing replies.01IRISH
Posted 10/4/2011 1:00 AM (GMT 0)
Greetings Irish,

I wish I had some info on your syndromes I could pass along, but unfortunately I have never heard of the ehler's danlos / marfan syndrome or read anything about them being connected to PFOs. Over the last few years I read everything I could get my hands on regarding PFOs, and I don't recall the syndromes ever being mentioned.

The PFO and ASDs usually cause the kind of side effects that are related to poor heart function. With a big hole, the efficiency of the heart's pumping action can be severely impaired to the point of congestive heart failure and cause the typical problems related to that issue. For most people with PFOs the hole is small enough that it never causes any obvious symptoms that would lead the docs to look for a hole in the heart. In fact for a lot of us the only time they ever find it is when they start looking after a stroke and eliminate everything else. They believe that since the PFO lets "dirty" blood from the venous side of the pump mix into the clean arterial blood side of the heart, that there is a risk that blood clots / debris can pass through the hole and go straight to the brain and cause strokes. Without the PFO, normally these particles would make their way to the lungs and be caught there - if they are big enough, they could cause a pulmonary embolism but lots of times they are so small that they aren't even noticed.

Once the PFO is closed, the fundamental difference is that now the "dirty" blood can't get through and mix into the fresh arterial blood supply. After the closure, there may be some side effects from the small difference in blood pressure and heart pumping efficiency, for example some folks report headaches. Many of us don't notice any real difference at all.

The big risk after a closure is that blood clots could form on the device, and if they break off and get into the arterial blood they could cause strokes or problems in other areas. They prescribe blood thinners (aspiring, Plavix, coumadin etc) to minimize risk of such problems. There are also reports from some folks that nickle allergies can be a problem depending on the type of implant and how much nickle it has in it. I have not seen a site specifically dedicated to allergies and the PFO closure devices, but if you did have a nickle allergy the same symptoms would be likely as suffered by other nickle allergy sufferers so you might find good info on sites dedicated to general nickle allergy stuff.

I hope your docs are able to figure out what is going on, it is very difficult sometimes when you have problems that affect multiple systems. Sometimes a good internist or endocrinologist can help narrow things down. Good luck Irish!
Posted 10/4/2011 1:25 PM (GMT 0)
Irish,

I found a thread in the Fibro Forum from a member with this disorder although they do not mention PFO I thought you might be interested in reading the post.

https://www.healingwell.com/community/default.aspx?f=24&m=1707406

Just click on the link. 

I am still looking for any other threads on this topic for you.

Here is another link you may have already found but I will post it FYI :-) :

http://www.inspire.com/groups/ehlers-danlos-national-foundation/discussion/eds-and-pfo-patent-foramen-ovale/

Kindly,

Kitt

Posted 10/18/2011 10:34 PM (GMT 0)
I'm so glad I found this site. I started having issues with numbing on my left side, nausea, dizziness, and blurred vision a couple of years ago.
I saw my dr who referred me to a neauroligist because she said I was too young to have a heart condition. I was twenty nine at the time and in excellent shape. I was tested for ms and after months of testing was told it's not ms. I hhad several mri's completed and was told that I have had a couple of minor strokes. The cardiologists that I'm working with found a pro but have stated that the hole is extremely small. I have symptoms of numbing on the left side of my body, violent nausea, weight gain, and etc the last couple of years. I have found that I usually feel these symptoms when I have my period, I don't get any sleep, or overextend myself physically. I just want to figure this out. Please give me advice

Post Edited (Marathon runner1) : 10/18/2011 9:48:08 PM (GMT-6)

Posted 10/19/2011 1:48 AM (GMT 0)
Greetings Marathon Runner1,

If you have the symptoms when you are sleep deprived or get very tired, it might be worthwhile to see your neurologist again and ask if the symptoms might be due to fallout from the previous stroke damage or perhaps something more straightforward, like migraine-like symptoms caused by dehydration or changes in electrolyte balance. The fact that the symptoms recur ought to stimulate some interest from the neurologist in finding out what is going on.

Also, if you are having these symptoms after going without sleep or when you put forth intense physical activity, you might be well advised to limit such situations until you know what is going on. If you push yourself too hard and there is some underlying physical cause for the symptoms you experience afterwards, you might end up seriously damaging yourself someday if you push too hard. Get plenty of rest and reduce your exertion level a bit, and you might be doing yourself a favor.

Tough to hear I know, I am a "Type A" personality to the extreme, and learning to take it a bit easier was really tough for me. It sure beats the worst-case alternative though (grin)

I hope your docs figure out what is wrong with you. Good luck!
Posted 10/19/2011 3:54 AM (GMT 0)
I have reduced my physical activity substantially but get extremely frustrated that I can't do the things that I have always been able to do because of these issues. I have a difficult time understanding why I'm just getting these symptoms now if I have had this pfo all my life. I'm considering the surgery but have a tough time justifying placing a foreign object in my body. Does this surgery reduce getting these symptoms?
Posted 10/19/2011 11:32 AM (GMT 0)
Some people with migraines may experience reduced symptoms after a PFO closure, but for most people the implant does not seem to make any obvious changes in how they feel unless the PFO was large enough to impair heart function (like an ASD). In my case, I can't even tell the device is there. I do all the same stuff as before, including strenuous exercise, riding my bike, etc. I feel like I have more stamina and mental clarity, but that is more likely due to the extra exercise and focus on diet / relaxation that I adopted in my efforts to achieve better overall health.

Note that a small number of folks report experiencing allergy-like symptoms from the implants, possibly due to a nickel allergy. If you decide to have the closure done, it might give you some peace of mind to find out ahead of time whether you have such an allergy.

I know it is very stressful facing such problems and having to consider having the PFO closed, but you can take comfort in knowing that for most people it appears to be a very safe procedure. Most of the folks I have corresponded with have had results similar to me - can't even tell the device is in there.

Good luck marathon runner, I hope the docs help you resolve the symptoms you are suffering so you can return to full health soon.
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Posted 10/19/2011 11:53 AM (GMT 0)
Forgot to address your comment about why the PFO might cause symptoms now, after being there all your life with no issues. The basic answer is thought to be "normal wear and tear".

People tend to have an increasing number of circulatory issues as they age. Over the years physical damage can accrue from high blood pressure, hardening of the arteries, etc and impair blood flow. This in turn directly increases the risk of blood clots, varicose veins, etc. In people without a PFO, small (tiny) clots are normally filtered out in the lungs and cause no noticeable symptoms, whereas a big clot can block off blood flow and cause big problems. For folks with a PFO, a clot that passes through the hole can go directly to the brain, and even a tiny clot in that situation can cause big problems (stroke).

As we get older our risk of such issues naturally increases. We then make things worse by doing strenous exercise and getting dehydrated (increasing clot risk), sitting in one position at desk etc for long periods (increasing clot risk), damaging ourselves physically and getting bruises, torn muscles, etc (increasing clot risk), eating things or gaining weight that results in impaired blood flow (increasing clot risk). As we age and do things that increase the risk of getting small clots, we directly increase the risk that one of those small clots might flit through the PFO at the wrong time and go to the wrong place and cause a stroke.

From my experiences and what I have read, I strongly suspect that pushing myself so hard directly contributed to increased risk of clot formation. I still push myself hard exercising, but I am now MUCH MORE CAREFUL about what I do and what I eat. Every day I think about how darned lucky I am to have survived multiple strokes, and remember that if I get carried away and push to extremes that I might not be so lucky next time.
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