patent foramen ovale and stroke

I had an aphasic stroke at 40. No cause or health problem was found. I recovered with insignificant damge. After 5 1/2 years (last December) I developed some bizzare symptoms that were similar to the stroke: short, repetitive (multiple times a day) episodes of speech and balance problems. I returned to the neurologist. I had a new MRI which shoed only the original stroke. After a few weeks, I was diagnosed as having a seizure disorder caused by scar tissue from the stroke, thus the symptoms were like the stroke given that thesame area of the brain was involved. Anti-seizure medication stopped the symptoms cold (first Depakote which I didn't tolrate and now Neurontin which is great). After the seizure disorder was diagnosed, my neuroligist (who was not the same one I saw with the stroke) started to run and re-run tests (Arteriogram, TEE, echo, etc.) to see why I had the stroke in the first place. The TEE indicated a small patent foramen ovale which had not shown up on the echo. My doctor and another neurolgist now think the PFO was the cause of the stroke. I have been told to take an aspirin each day as  blood thinner to reduce the risk of future strokes. My question: what is my risk of futue strokes given my history? Is aspirin the best prevention? Should I consider repairing the PFO (my doctors are not in favor of this)? Thanks for any adivse on this.

[CCF CARDIO MD - DLB]

This is a tough question and there really is not a "right" answer to this question yet. The issue is being studied, but as of now, there are only lots of opinions as far as the correct approach to your situation. One approach is your doctors' approach of trying aspirin, and as long as you do not have a recurrence of stroke or mini-stroke, to just leave you on the aspirin. If you do have a recurrence, the next step would be to add another blood thinner in addition to aspirin. This is a sensible, common sense approach that has been used for many years. The only problem with this is that if the next stroke is a large one, it could leave you with significant disability, or worse. Closing the PFO would eliminate any stroke risk that his may be posing (this makes sense, but is actually unproven), but the downside is that it is an invasive approach associated with real risks right now. I know smart doctors who feel very strongly about each of those approaches. If you would like another opinion, you could call and make an appointment with one of our pediatric interventional cardiologists (they do this procedure on adult patients too).

[Joyce Pogue]

I read in USA Weekend that men and women who have migraines preceded by auras also have a small heart defect called PFO.  Is this true in all cases?  I have had auras before migraines for over 40 years.  I also have an occasional extra heartbeat and sometimes a short pause in my heartbeat.  Am I at risk?

[Gopinath]

I had head ache on my right side for a week followed by numbness of my left hand fingers.Doctors confirmed it to be stroke(Hypodense area was revealed in ct scan).
I was on
FAXIPARIN
NOOTROPIL
for a week followed which I recovered except for headache

They called it complicated migraine.My Echo cardioghram showed normal while my ECG showed WPW syndrome(assymptomatic).TEE revealed PFO.Doctors didnot suggest cardiac surgery as the passage is very small.
I was on:
ECOSPIRIN 325(1 0 0)
TRENTAL (1 0 1)
CIPLACTIN 10 (1 0 1)
FLUNARIN 10   (1 0 1)

After this treatment my brain has become dull and inactive.Is it because of the medicines or the stroke.I require your suggestions

[rama]

HELLO

[Wendy Wolf]

I have read that skin rashes were associated with PFO...if so, what kind?  I have small patches on the inside of my elbows which appeared after scuba diving.  It goes away with use of a cream called Ultravate...but it comes back regularly. I have read that divers may face special problems if they have PFO.  If that rash is my only symptom, should I get tested to see if I have PFO?

[Dan]

One man's experience for those considering surgical ASD/PFO closure.

I was an otherwise healthy, moderately fit 52 year old when I had the surprise of a lifetime...a small stroke.   During the course of a one week hospital stay it was revealed that I had a PFO and atrial septal aneurism (aneurysm) which possibley allowed a clot to find its way to the right middle cerebral artery.  I was discharged with the typical pharmaceutical course of warfarin plus asparin (aspirin).  I encountered some difficulty in keeping therapeutic on the medication and was troubld by "drifts" ...my own definition of  unexpected bouts of imbalance and transient dizzy spells (possibly blood shunting across the ASD, PVC'S, PAC'S, who knows ?). My research into the matter revealed what has already been articulated. There is no unanimous support for surgical closure. However, the preponderance of the evidence plus my own consultations with the medical profession seemed to point in that direction in my case. I elected surgery.  No doubt about it, the surgery is not pleasant and the recovery is as variable as the number of individual patients.  However, even in spite of an allergic reaction to the antibiotic while on the heart-lung  machine (which I will inquire about later) and post-surgical bout with pericarditis, I remain grateful that I had the operation and that we live in a nation which at least offers us choices.  Life is certainly fragile and maybe tomorrow I'll get hit by a car, but at least I can say that I made a decision which eliminated possibility of another more debilitating stroke from the ASD.  Which brings me to the point that in such cases where the biomedical community is not decisive, we ourselves, have to take the initiative to get the best information we can and take responsibility for our own health care decisions.  For those of you who are saying "Oh yeah, easy for him to say," believe me it's not and I have the 8 inch scar on my chest to prove it.

Always independent and strong willed, I never thought of myself as the type to seek a support group or chat line with which to share my story.  Well, just goes to show you how circumstances can change things. I would drive a hundred+ miles to just sit with a few people who have had similar experiences just to share and hopefully help another person.

I would appreciate any replies/responses.

Dan



        ..

[heather]

Dan, I just read your story and I have had a similar experince. I have been struggling with what to do. Have surgery or not.  The doctors are willing to keep me on Aspirin the rest of my life. I am scared either way. Don't want the surg, but what if this TIA happens again (or worse). I am only 30. I keep thinking "its not them who may end up drooling on themselves and wearing a diaper at the age of 30 something".  I thought your story was motivational. I am glad you wrote. See you did help someone. I may print you letter out and show it to my cardiologist. You are right, sometimes the patient is the best person to make the decisions about themselves.

[Dan]

PFO and Stroke - response back to Heather.

After I took the big step and sent a comment to heart forum about my experience, I watched often to see if possibly there was someone with a similar situation. Suddenly, there is was...a chance to possibly help someone else.  While not  a physician, I am trained in science which likely did less for my decision than the same common sense and logic you refer to.  Let me see here.  Likely, the cardiologist says something like "there is no conclusive support favoring the surgery because some % of the normal population likely has a PFO/ASD and lives a normal full life, and no guarantee that that was the source of the stroke."  But, think about that statement critically.  We have (had in my case) a PFO/ASD  AND  HAD A STROKE...not exactly the same thing as the condition with a normal full life.  My decision was based on the fact that there appears to be mounting evidence of a cause and effect relationship between the two and, in the absence of any other overwhelming stroke risk factors, the surgery seemed the way to go.

Believe me, I know it is a frightening situation and serious decision no matter what.

Dan      

[Jim]

Response to Heather .                                                                     I also would like to thank you for your storY, Dan. Heather.... I am also a 30 yr. old ( male ). 2 weeks ago I went in to the ER for all the same symptoms all the rest of you stroke survivors had. But my major complaint other than the Dizzieness, was I was experienceing right leg numbness. Well to make a long story a little shorter,I was experiencing a stroke ... an hour and a half later, I start to lose my speaking qualities. So after 2 negative CT's and a negative MRI, and negative Spinal Tap, I was to have a MRA test done that in the end, showed two small strokes. Then all the specialists wanted to know why a a healthy 30 yr. old construction worker, with perfect levels of chloresterol, was experiencing  strokes. 3 days into my 5 day stay at the hospital, an echo cardiogram test revealed I also have PFO. Easy find when they inject water into your IV and its shot out of your heart while being monitored. I was told by my doctors to also  plan on staying on Coumadin for the rest of my life. Ohhh incase I failed to mention this hole in my heart is said to be "Large", Quote on Quote. This is all brandnew to me and my family. I,m not sure what to do next.... I,m told if I wait a year there may be a surgical treatment done on PFO right from under your ribs. Never haveing to open you up so to speak. But about the time I finish reading up on that, I find something that says that it isnt proven,let alone possible. Are they on the brink of a new surgical procedure for PFO, or am I gambeling with my life to be saved from an 8 inch scar. ??  And I agree with what your all thinking.... "your life,or an 8 inch scar".Shouldnt be a tough decision. But do we think there is a possibility of haveing it done scar free in a year from now.??  Any advice or lititure, from anyone on any of this would be greatly appriciated. The only ones Ive talked to are the people who charge $150.00 an hour. And sometimes it dosent take a doctor to give the best advice for  my circumstance. This is my first letter,and I hope I didnt take too much of your time, but I,m just not sure what to do , or even if it is smart to do any of these surgical procedures?? One specialist says " Do it or your gonna live on Rat poison your whole life with a good chance of having another larger stroke. And about the time he leaves the room another doctor is telling me to hold off while new risk free surgical procedures are being perfected. And then of course my wife has her theroy on what to do . LOL. Any information on this would be greatly appriciated.                                                                        Thanks for Reading !!!                                                                              Jim... ***@****

[Dan]

PFO and Stroke  -  Answer to Jim
Jim

Not being a physician, take what I say as simply a shared experience from someone who has been exactly where you are now and who wants to help.  Ultimately, it will be your decison.  

The one thing I did find is there are a few more cases than I thought out there with PFO and a subsequent stroke like we had. By coincidence, a colleague at the university where I teach has a 33 year old brother who - you guesses it - had a PFO and stroke. I believe there lots of reasons why we can't seem to find any solid answers about exactly what to do.  Heart attack and valve problems are more common and have simply had more research hours devoted to them.  Also, strokes may have all kinds of other causes than PFO'S making it more difficult to substantiate cause and effect.  So, from this I would say the first step is to be absolutely satisfied that all other causes of stroke have been as close to ruled out as can be.  From what you said, your diagnostic route and results sound very much like mine.

As far as the surgery is concerned, please remember repair of a PFO is working inside the heart whereas the more common bypass procedure is on the outside.  I think most minimally invasive procedures have been more used with bypass although my colleague's brother had his PFO repaired with a mini-sternotomy...cut a little at the top of the sternum and bottom then work underneath it.  I had the complete open chest sternotomy because, simply stated by my surgeons, it did not seem logical to give them the bare minimum amount of space needed to work on the inside of my heart.  Although that (complete sternotomy)is the most invasive and requires the heart-lung machine, it is also the most tried and true method.  I have heard about going between the ribs for single bypass and   and valve replacement but not PFO.  I simply don't know.  With that procedure they only stabilize the part of he heart they are working on rather than the heart lung machine but once again it is still giving a small amount of space to work in.  Actually, the first thing I thought I wanted before I went for surgery was non-invasive catheter repair but quickly  gave up on it upon learning it has been around for years without a particularly good success record.  For this, simply think of a small closed umbrella passed through the hole then opening it and pulling the handle back out leaving the cloth (patch)over the hole. I believe they sometimes call this a clam shell.  

Well friend, that's why I have an 8 inch scar on my chest which, by the way, really isn't all that bad over time.  My wife comments all the time that it isn't so very noticeable and I think she's right.  You are a construction worker and I am an animal science professor who has done some cowboying.  Tough enough doesn't make this any less frightening and I am not going to fool you, the surgery - if that's what you decide -  is no great picnic.  I hope I am not going out on a limb here, but a caring family and friends are among the best of all medicines for recovery.

Best of luck whtever you decide.  And if there is anything else I might do to help you, let me know.

Dan

[Gina]

In response to Dan, I am a 34 year old female who went through  the excact same thing as you, I woke up one morning and my hole life changed, I had a stroke and than found out I had a PFO and a septal Aneurysm, it took many weeks before my heart defect was found, if it wasn't for my persistance it never would have been found, we as patients need to take the bull by the horns! not saying that Doctors are bad people they are just to busy and the HMO"S are screwing everything up.  Anyway I also elected to have surgery, five weeks ago to be excact, and I am glad I had it done also, no it was not fun but who is to say that if I have another stroke I am as lucky to get out of it as I did the first one which I came out of nearly unsathed.  I chose open heart surgery it stands the test of time, and they did a minimal cut, I was not concerned with a scar on my chest, a scar is far better than having another stroke, or my heart failing me because of this defect, those cathitar opertions just did not apeal to me, and my surgeon who was great thought open heart was the way to go. Life is short and I am realizing now just how precious it is, my experiance with this whole thing has left me out of work for awhile and broke! but rich with love to make my life better, my boyfreind thinks my scar is sexy anyway, ha ha. To all who are going through this, my prayers are with you, I would love to talk to anyone who wants or needs support, I know I needed it. e-mail me if you like at ***@****.

[Dan]

Hello, Gina

Sounds like you did the right thing and your great attitude along with caring people around you will be the best medicine of all as you recover.  Your boyfriend sounds like a great guy...very supportive.  I am sure that your younger age - compared to my 53 - may be a factor, but even if you feel great, don't overdo and push too hard too soon.  I was anxious to return to work and a normal life and in so doing likely prolonged my complete recovery time by months.  Even now, ten months later, I do have some fatigue an an occasional rough day...who doesn't ? But hey, its a small price compared to the potential devistation that a full blown stroke could have caused.  I agree with you completely.  We are issued one life when we come into this world and have a reaponsibility to do whatever is necessary to live it to the fullest and contribute to others in whatever way we can.

The fact that people like us may never take things for granted or look at the world in the same way again is, to my way of thinking a gift we were given for the warning we had and the difficult decisions we then had to make.

Kind Regards to you, Gina, and anyone else who reads this forum.  

[Gary]

In responce to Joyce Pogue. I mentioned to my doctor the article  in USA Today and he said that just because I have always had migraines and auras (30 years or so) it doesnt always mean a PFO is there. He listened to my heart and said it sounded fine. I am 42 years old. He said that if there was any problem related to my heart that it would have already surfaced by now.