My PFO

Hi All

I have read a few comments on topics regarding Patent Foramen Ovale since joining Women Heart Support Community and decided it was time to write my own experience.

I used to be a very fit and healthy young woman. A previous dancer, runner and took regular exercise. One day when out running I felt unwell, thinking that I was probably coming down with something decided that I should go home. On returning home, after about 20 minutes I collapsed, when I came around my left arm had gone numb and felt very cold. Not knowing what had happened I got my partner to take me to the doctors. The doctor sent me to the hospital. Unfortunately, I was never tested for a stroke at the hospital and spent four years going around in circles having many tests until finally last year I was diagnosed with a PFO. It was then confirmed that I'd had a stroke and the PFO was the cause.
My left arm has not regained full strength and I suffer with loss of grip and it will suddenly go cold. My debilitating symptoms are palpitations, breathless, dizzy spells, exhaustion, uncontrollable sweats when I try to walk do mild exercise, migraines. I have met with my surgeon today who has advised me that I am now on the waiting list for PFO Closure but he tells me that he doubts my symptoms will improve after surgery and that it is likely they are not related to the PFO. I don't believe this because I used to be fine but now I am not and from reading so many other discussions and learning of other peoples experiences I would be interested to hear from anyone who has had a PFO/Stroke and closure and if they have had any improvement with their symptoms?
Take care.

Report post

16 replies. Join the discussion

I have had severe dizzy spells and 7 spots on my brain which they think are previous TIA's. They jumped to close mine but they could not find it (apparently very rare) . However, I personally know 4 people who have had their pfo closed and it made a world of difference! They have been so happy and said it that they were "completely new" person after the closures. One was my aunt, who is 80 and still dances twice a week. The other 3 were neighbors (how weird is that, maybe it's something in the water, ha. Ha.). They have been very happy with their closures and all has gone well. They are different ages, 30's 40's and 50's. No one had any complications, but it took 6 to 12 months to regain strength. Even my 80 year old aunt is doing well. As for me, I need to go and get re tested. I am being slow about it, as I am not too excited to repeat the surgery before 6 months has passed. It wasn't a bad surgery, my groin area is just still a little sore. What kind of tests have you had? I had a Doppler bubble test which revealed a grade 5 PFO. Let me know how it goes. Also it seems that each state/ health organization approaches PFO a little differently. Good luck!

Report post

Hi,Sorry your symptoms were missed, and for your loss of previous execellent health. At least we are lucky enough to still be alive. I hope you find all that you need to thrive.

When I was trying to figure out what was happening to my health, I discover that PFOs can also be associated with CFS and that some brains reveal evidence of small strokes. For mor information, google "PFO Related toCFIDS" to see what is known in the scientific community.

Certainly PFOs exist with or without the CFIDS connection, however knowing of this may be to your benefit and articles also go into detail of testing, what looking for, etc...

Best wishes to you in your healing.

Report post

Hi Toomanybubbles
Thanks for getting back to me. I am sorry to hear of your TIA's and the fact they could not find your PFO. It does give me comfort that you personally know 4 other people who have had their PFO's closed and have had improved health and feel much better. After almost 5 years of ill health I long for the day when I can feel normalish again.
You must go and get checked, it is very important. My surgeon said even though I have lost full use of my left arm, he believes I am lucky compare to others who suffer serious strokes and have severe disabilities. My advice would be to get things checked and don't risk any further TIAs.
I've had an Echocardiogram, then a bubble echocardiogram, then a cardiac TOE. Plus I have had many MRIs. In the UK the guidelines state that if you are under 55 years of age and have a TIA with no other reason other than a hole in the heart then you are recommended for closure.
Take care.

Report post

Thank you thankful I shall certainly google PFO Related toCFIDS. It has been a nightmare, infact until recently I think they were not taking me seriously but it seems too common hearing other PFO sufferers.
Take care too and thank you for your best wishes.

Report post

Andersotsb: I just had another bubble test 2 days ago, but haven't gotten the results back. Also I am scheduled to see a neurologist soon to discuss my MRI, etc. I am so sorry you've had so many problems. I was lucky, the second day of symptoms, I saw a neurologist and she put me on Plavix immediately. I don't seem to have permanent damage, except that I still have some dizziness and LOTS OF MIGRAINES 5 months after my initial severe dizzy spell. I feel that things will be resolved, it's so nice there is this website to get information about everyone's experiences! I have had CFS and fibromyalga for YEARS, but had never heard it was related to a PFO. I thought I had managed it quite well and had pretty good health until the day I turned "dizzy." Thanks & Good Luck!

Report post

Hi Toomanybubbles,
I did not realize you also had been dealing with CFS and fibro for years, so I'd like to offer some more resources. also google The following exact words: ME and Heart Failure. ME/CFS are basically the same and when you google those exact words about the fifth listing will be the www.cfids.org or cfids-bag.org. Something like that. Click there . You'll discover an article and a link within the article to Paul Cheney MD, PhD video training on PFO, CFIDS, etc. I found it full of the science and practical explanations.

Paul Cheney MD, PhD mid career developed idiopathic cardiomyopathy and ended up on the heart transplant list. Fortunately he received a new heart and is continuing his work. So he is not only a brilliant and caring scientist, but also a heart patient. In that video Dr Cheney relates to how he got a new heart, that of a young athlete and expected to by feeling well right away from the vastly improved perfusion but instead took a year or so. And al of his experiences helped him better his CFS patients and our unique challenges.

Best wishes to you!

Report post

Hi Andersot...i relate completely. I had my PFO closed eight years ago after a stroke. I had left side weakness and numbness plus off balance. The PFO closure prevents another reason for a stroke. Get it done. It didnt hurt at all and the shortness of breath was gone. As far as weakness...i used soup cans as lightweight "barbells" for exercise, pilates ball and horseback riding to improve my balance..dont let it stop you. Small amounts of exercise, then rest when youre tired. It takes time. Feel better...Teresa

Report post

I used to be an elite athlete until I started getting awful fatigue, dizziness, tachycardia, nausea and back/neck/shoulder pain. In investigating all this an echo discovered my ASD (same as PFO). I had it closed a year ago on 17th of April. There didnt appear to be any complications.
My symptoms haven't changed.
Two different cardios told me my symptoms weren't due to the hole. I didn't believe them because of all the testing I had done nothing else was found wrong.
If you search google for these symptoms they can be many things. I have found this is the problem. I continue to get tested for all sorts of things to no avail. My doctors (endocrinologist, neuro, cardio and GP) all have no answer.
It's frustrating and awfully depressing that no one can help me. I love in Western Australia and our choices of alternative therapy doctors is slim.
I'm almost 40 and up until last year I always felt many years younger than my age, but now I feel like an invalid. I still can't exercise as I get dizzy and the fatigue puts a damper on most plans. I just pray everyday for an answer of a relief.

Report post

Thankful: thanks for the information! I have been reading it and it's very interesting. I can definitely relate to it. I have always had a terrible time with the eb viruses, mono, herpes, chicken pox/ shingles and get deathly ill from a simple cold sore. To think all this might be related to a pfo certainly brings it all together. Also I was diagnosed with Vestibular Neuritis, another link to the herpes viruses. I hope to get some answers soon. Thanks for your input!

Report post

Hi ToomanyBubbles

Thanks for your information too, it is great to find this site so that we can learn about the various symptoms. My situation is a bit of a disaster hospital wise. The day I collapsed I went to the hospital A&E and they said that their was no specialist to see me and to come back the next day. If I had known I'd had a TIA of course I would not have left but at 32 and always fit up until this point never thought this could happen to me. As a result I have gone back and forward to the hospital for nearly 5 years having tests I didn't need to have and treated for a degenerative neck! I kept saying what about the fact my left arm hasn't had full strength since the day I collapsed but until now didn't get an answer. I suffer too with dizzy spells and CFS but until finding out that I had the PFO didn't know why. I also have a cardiac shunt which feels similar to palpitations and these drive me crazy because I can feel it throughout the day and night. I also have migraines. I was lucky to meet one Neurologist who did finally last year investigate but as a result of the last five years, have not been treated for the TIA. It seems so odd that specialists don't see a link with everyone's symptoms sometimes. I hope that all goes ok with your bubble test.
Take care.

Report post

Hi Teresa

Thanks for responding it has given me a light. I am hoping that the operation will be sooner than later and that I can start to take light exercise and rebuild my health. I feel like things are on hold until the operation happens but to here someone who has gone through this and has left sided numbness gives me hope that I can rebuild some strength back.

Take care.

Report post

Hi Karinac
I am sorry to hear that after closure you are still having health issues. I used to be a professional dancer and then when I gave up dancing I maintained my fitness. Until I was 32 I never had any issues (only asthma as a baby/small child which I wonder if it was now)! I can totally understand how not being able to maintain your fitness has an effect on you. I too can no longer exercise because I get dizzy, breathless, migraines and do suffer with neck and shoulder pain. You almost look back on the person you used to be and think ' was that me'! I am hoping that when they close the hole I will start to feel better.
I am presuming that they have checked your spine with an MRI? If you have degenerative changes in your spine this could be causing you some issues. You may have already had this done but I know from research that radiologists say that a disc is not pressing on the nerves or sponge tissue and actually it turns out that it is.
If you try a health shop - maybe online too, they may have some special oils and vitamins which could help. You may have tried fish oils, vitamin D & C, calcium, Zinc, Gulcosamine Sulphate. Chamomile oil helps to control muscle spasms and has pain-relieving and anti-inflammatory properties. Lavender oil prevents muscle spasms and inflammation. It also helps to relieve tension, which may contribute to or worsen back pain.
Another long shot is your feet - if you ran a lot I was once told by a physio that you could disturb nerves etc in your feet which could cause issues.
I wish you well and take care.

Report post

Toomanybubbles, best wishes in your healing journey, I'm glad the new information is to your benefit!

Report post

Hi -

I just found out I have a PFO with a hypermobile atrial septum and will most likely have the TEE test done soon after I meet with a cardiologist I've been referred to.

I too used to be very active, running 5.5 miles a day sometimes. Then I had a car accident, but still remained fairly active. Over the last ten years, my activity levels have gone done and I get very tired mentally and physically after what normal people can seem to handle on a daily basis.

They have found nothing wrong with my blood work and I a beginning to think this PFO issue could be part of it as I read that with age, some of these can get bigger.

I never had severe headaches and migraines until a few years ago or so. And my hormones right before my period makes all my symptoms worse - dizziness, loss of balance, eye twitches, severe headaches, severe "depression headaches", and extreme fatigue with pale pallor. My life has dwindled down to not much of a social or interpersonal life and I need to lay down a lot and rest after so much activity. Laying down and resting in total quite or with a movie seems to recharge me. I also have drops of low pressure to about 94/55 that come and go for no real reason that I can see.

I go see a neurologist tomorrow and I really hope he orders some sort of a brain scan as I think something has gone wrong up there as well at times with similar episodes. I also have chest pains routinely on the left side.

I am sad to hear about so many healthy women who have had their energy taken from them without a real cause in sight, though I am also relieved to feel that maybe this heart defect thing could be the culprit and that it could be fixed. I have read on other sites that those who had it closed started to feel better - many people, in fact.

Good luck!
Catherine

Report post

Thanks for your help Andersobtsb. . . .
Actually I have been feeling a lot better, especially with the dizziness. I saw a naturopath and she started treating me for hormonal imbalance stuff. I've had much less dizziness and mood swings. I've even started riding my bike to work (30km round trip) even though my heart rate is still too high and I seem to get a bloody migraine after every second or third time cycling in. . . . I'm doing it anyway as I love cycling. Also I noticed an improvement after I had a mental shift. I just got so angry with "it" and decided to get on with my life and be grateful for what I had. . . . After this I started to feel better.
But the biggest thing that helped was learning acceptance and dropping the obsession with having to have an answer. If I'm unwell, that's it and I'm doing all I can with what I have. It's has helped heaps.

I wish you all well.

Report post

Also check out "PFO Research Foundation" on facebook. There is a lot of information about PFO /ASD.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support WomenHeart

Help WomenHeart reach its goals and support people like yourself by making a donation today.

Donate to  WomenHeart

Discussion topics

Heart health links and resources


The SCAD Ladies Stand Up -- Read the special report

Community leaders

Disclaimer

The information provided by this online support network through WomenHeart: The National Coalition for Women with Heart Disease and Inspire is for general informational purposes only. The information is not intended to substitute for professional medical advice, diagnoses, or treatment. If you are ill, or suspect that you are ill, see a doctor immediately. In an emergency, call 911 or go to the nearest emergency room. WomenHeart: The National Coalition for Women with Heart Disease never recommends or endorses any specific physicians, products or treatments for any condition.