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#179819 - 09/23/13 12:54 PM Stroke
GrumpyGord Offline
member

Registered: 01/05/02
Posts: 875
Loc: Michigan
Has anyone had any experience with a stroke caused by PFO? I had a stroke a few weeks ago with no damage and I was only affected for less than a minute. They think that it was caused by a PFO which is a hole between heart chambers which everyone has at birth and usually closes shortly after birth. About 25% of folks retain the hole and most are not aware of it but it is a point where clots can form and get into the other chamber and release a clot to the brain. They are presently doing a whole bunch of tests to determine the next step and I will not know what happens next for three or four weeks.

In the meantime it is causing me quite a bit of anxiety and my wife is sure that my days of backpacking, especially solo, are over. All other health issues are good and all labs, blood pressure and cholesterol are in normal ranges. I contend that this did not give me any issues for 73 years and if I can last another 73 years without another incident I will be just fine. I would be willing to carry a SPOT or similar for her peace of mind but staying near civilization does not appeal to me.

Anyone else have any experience with this situation? In the meantime it is making me tense wondering where do I go from here and I think I should go out backpacking for a few days.

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#179822 - 09/23/13 02:33 PM Re: Stroke [Re: GrumpyGord]
Rick_D Offline
member

Registered: 01/06/02
Posts: 2802
Loc: NorCal
Geez Gord, no, I have no similar experience but certainly know a lot of folks who've had undiagnosed cardiac maladies that sprang up--"surprise!"--after decades symptom-free.

I have no advice, other than becoming a pest to the experts until you get some satisfactory answers. You definitely need to know what, if any, real-world limitations you're confronting. I'll guess you can continue hiking presuming you remain in shape. I'd hate to give it up, personally.

Good luck!
_________________________
--Rick

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#179824 - 09/23/13 03:08 PM Re: Stroke [Re: GrumpyGord]
Pika Offline
member

Registered: 12/08/05
Posts: 1754
Loc: Rural Southeast Arizona
My wife had a PFO that was only diagnosed when she was being evaluated for a double lung transplant. She was 70 at the time and had lived symptom-free all her life. Her PFO was repaired during the transplant procedure so is no longer an issue. From what I have been told, having a PFO increases the likelihood of having a TIA or a thrombosis but how much is not clear. There is a procedure available for closing the foramen using procedures similar to those used in cardiac catheterization. I'm not sure how widely available the procedure is but it is worth looking into. Were I in your shoes, I would be (doing what you are doing) researching the web and bugging the devil out of any medical advisor within reach. Good luck with the bugging and hope it all works out well for you.
_________________________
May I walk in beauty.

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#179829 - 09/23/13 04:22 PM Re: Stroke [Re: Pika]
GrumpyGord Offline
member

Registered: 01/05/02
Posts: 875
Loc: Michigan
At this point I am wearing a monitor for three weeks to rule out Arterial Fibrillation. I have no indications of irregular heartbeat but it is still possible. The next step is a nuclear stress test which is scheduled in a couple of weeks. The repair of the PFO is done as an outpatient but is only used after at least one stroke or TIA while taking aspirin.The results of repair over medication are really marginal going from about 2.5% chance or re occurrence to 3%. That does not sound like bad odds to me but the doctor and my wife both have visions of a headline reading "dead backpacker found in woods". I am not sure of the odds of a stroke are without PFO while eating Big Macs every day. In my favor is the fact that my general health is good.

I was hoping for someone to say "I have had the same thing for years and I go out solo for weeks at a time" I suppose that is just a dream. If it were just me and not family involved I would just go for it.

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#179832 - 09/23/13 05:33 PM Re: Stroke [Re: GrumpyGord]
jimmyb Offline
member

Registered: 09/16/13
Posts: 276
I feel for you Gord. I have Fabry disease and its been twistin me up since birth, near 50 yrs now. It comes with kidney and heart disease. Strokes are very prevelant. I don't have the problem you describe but last year I had my first go round with Afib. I scooted off to the emergency room where they proceeded to reset my rhythm. Oh what fun. After discussing it with the Doctor AND doing a good bit of reading on it myself we went from discussing blood thinners and heart meds down to just an aspirin regiment. In my case no prior symptoms combined with low risk profile such as age, fitness ect. helped in making my decisions to stay away form the heavy meds. Each case is different of course but as others said, make sure you get down to the nitty gritty with the doctors. They still think Im nuts for wanting to even day hike in the wilderness areas or do most other activities for that matter but in my heart of hearts I know keeping active is what has kept me from suffering even worse symptoms of my disease. And as I tell everyone I would sooner die doing what I love be it hiking, sailig ect. than in front of the TV.

All the best to you, jimmyb

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#179852 - 09/24/13 06:01 AM Re: Stroke [Re: jimmyb]
GrumpyGord Offline
member

Registered: 01/05/02
Posts: 875
Loc: Michigan
"Backpacker found dead in woods" headline sounds better than "Backpacker found dead on couch watching TV"

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#179853 - 09/24/13 08:08 AM Re: Stroke [Re: GrumpyGord]
Pika Offline
member

Registered: 12/08/05
Posts: 1754
Loc: Rural Southeast Arizona
Gord, from what I have read about 20% of Americans are living with a PFO. If it were a major risk for stroke I think it would get a lot more attention than it does. Up until I had an echocardiogram, I didn't know whether I had a PFO; I don't, just a leaky valve. So, there may be a lot of people who could say "I have the same thing and I go out for weeks at a time" but can't because they don't know. The link below is informative but I'm sure you have already seen it. Good wishes to you.

http://www.stroke.org/site/PageServer?pagename=PFO
_________________________
May I walk in beauty.

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#179868 - 09/25/13 01:15 PM Re: Stroke [Re: GrumpyGord]
billstephenson Offline
Moderator

Registered: 02/07/07
Posts: 3915
Loc: Ozark Mountains in SW Missouri
I don't know anything about this either.

Originally Posted By GrumpyGord
"Backpacker found dead in woods" headline sounds better than "Backpacker found dead on couch watching TV"


I have to agree with that. laugh

I'm curious, does the risk of stroke from this condition increase with physical activity, or what are the triggers?

I mean, if there is no known risk from activity I'm not sure I'd change what I'm doing much. If the operation only offers a slight decrease in risk I might avoid that.

If physical activity does increase risk, then I have to admit I'd probably change things up a bit. Might not go as far, might stay closer to the trails and easy to find spots. Might just slow down and that's it.

I met an old timer here, he was well into his 90s, that drove the forest roads in his pickup truck when he couldn't hike anymore. He just crawled along real slow and enjoyed the views. If I make it that far I think I'd do that.
_________________________
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"You want to go where?"



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#179869 - 09/25/13 02:47 PM Re: Stroke [Re: billstephenson]
GrumpyGord Offline
member

Registered: 01/05/02
Posts: 875
Loc: Michigan
Activity does not increase risk. As far as I can determine there are no triggers so a stroke is as likely at home or out on the trails. The problem is that at home you are probably less than an hour away from medical help while on the trail you may be a day or two. At this point I am inclined to just go for it but my wife is not yet convinced that being away from medical help is an acceptable alternative. She is slowly coming around and seems to be open to me taking a SPOT or similar so at least she knows how I am a couple of times a day instead if thinking that I may have had a problem the first day of a three day trip. As I have gotten older I have been doing less ambitious trips anyway. Twenty years ago 15 to 20 miles per day was pretty normal and now 5-10 miles per day is normal. I am OK with that. A bad day of backpacking beats a good day of TV any day as far as I am concerned.

What I have not been able to determine is what are the chances of a stroke with no congenital problems or with normal health or with poor habits like eating wrong and smoking etc. If chances are nearly the same it would be pretty easy to determine which way to go. At this point I am just waiting for test results and doctor visits to answer these questions. Fall hiking season is pretty much out for this year no matter what the doctor says.

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#180112 - 10/07/13 01:37 AM Re: Stroke [Re: GrumpyGord]
midnightsun03 Offline
member

Registered: 08/06/03
Posts: 2936
Loc: Alaska
There are two types of strokes: ischemic strokes cause by blood clots or other mechanical blockages (arterial narrowing like in the heart, fat emboli, calcium deposits, etc.), and hemorrhagic strokes caused by a ruptured blood vessel. It is the latter that can cause the worst strokes that result in significant deficits.

If you are cleared of a-fib and your doctor is comfortable putting you on an aspirin regimen and nothing else, then your risk should be about the same as anyone else. Exercise is a great way to prevent clots from forming (if you threw a clot through a PFO then it likely started as a deep vein thrombosis in your leg) and walking would be a very healthy way for you to prevent clots from forming. When this happened had you been sedentary for a while?

MNS
_________________________
YMMV. Viewer discretion is advised.

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#180113 - 10/07/13 06:45 AM Re: Stroke [Re: midnightsun03]
GrumpyGord Offline
member

Registered: 01/05/02
Posts: 875
Loc: Michigan
Thanks MNS. I just completed three weeks on a heart monitor and I go in for a nuclear stress test on Wednesday so once that is complete I will have a better idea of what happens from here. My wife talked to a friend of mine who had the same thing about three years ago and he is pretty much doing everything he did before.

I am relatively active. I go to my small hobby shop every day and move around there but I am running machines like a lathe and milling machine so a lot of time is spent standing in front of the machine. I have always tried to exercise but it is easy to just skip it for today. Since the stroke I have been a whole lot more faithful with the exercise routine. Actually I think I know what the strategy is on the get up and move around. They put me on blood pressure medication which cleanses the kidneys. That means that I have to get up to pee every hour or so. My blood pressure was really not that high.

I will know more in a week or so but from what I have found out so far is encouraging. The internet is great for getting information, both good and bad and I have looked at a lot of sites with good information. I have also seen some which tell me that if I purchase their concoction of bat wings and toad ears my troubles will all be taken care of.


Edited by GrumpyGord (10/07/13 09:47 AM)

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#180151 - 10/09/13 01:42 PM Re: Stroke [Re: GrumpyGord]
GrumpyGord Offline
member

Registered: 01/05/02
Posts: 875
Loc: Michigan
Latest update: Just got back from the cardiologist and had a nuclear stress test so I may glow in the dark tonight. Everything is normal with no blockage and normal function. Completed three weeks on a heart monitor and no abnormal heart beats except that my heart rate goes up for a half hour or so in the evening and he was OK with that when I told him that was when I was on the treadmill.

The biggest problem is that they really do not know why I had the stroke in the first place. Everything looks good and I had the PFO for 73 years before it caused any problem and if I can do half of that again I should be good. They have me on low dose aspirin and low dose cholesterol and blood pressure medication mostly just as a just in case thing. The doctor seemed to be a little dubious about backpacking and thought that I probably should wait about three months so no backpacking this fall I guess. My wife is starting to accept the idea but wants me to go on trail closer to civilization at least at first. She also likes the idea of a SPOT so I may end up carrying one just for her peace of mind but getting out next spring is looking fairly good.

Thanks for the input folks.


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#180153 - 10/09/13 01:58 PM Re: Stroke [Re: GrumpyGord]
jimmyb Offline
member

Registered: 09/16/13
Posts: 276
smile Sounds like good news. Glad there was nothing more serious involved. A little time off will make it that much sweeter when you return to full activities.

jimmyb

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#180224 - 10/14/13 08:37 PM Re: Stroke [Re: GrumpyGord]
llamero Offline
member

Registered: 10/29/12
Posts: 43
Loc: western Oregon
Originally Posted By GrumpyGord
I was hoping for someone to say "I have had the same thing for years and I go out solo for weeks at a time" I suppose that is just a dream. If it were just me and not family involved I would just go for it.


Grump, I can say that. On July 3, 2010 I had a brief TIA which put me firmly within the medical system. Many test later (MRIs, CAT scans, echo this, echo that and the treadmill) a PFO was discovered, about 8mm. I heard the term idiopathic a lot- medical speak for "your guess is as good as ours". I wasn't yet 60 years old and was in excellent health and physical condition. Apparently I either suffered blunt force trauma from one of my llamas or performed the Valsalva maneuver once too often while cutting and carrying firewood. My cardiologist made a video of the PFO in action while I was doing an extreme stress test on the treadmill. Mine does not open until I am at the upper end of my exertion. He rates the PFOs on a scale of 1-5, a 5 gets you into surgery asap. I was rated a 2-3.

My two best choices for dealing with the PFO are to either have a tyvek closure device inserted in my heart or scale back my rough and tumble ways, the cardiologist also suggested I not SCUBA deeper than 50' or climb higher than 7500'. I chose to not have a device put in my heart. I don't dive, but I have been above 7500' several time and I still do two week trips and work up a healthy sweat. As much as possible I avoid trauma to my body and Valsalva. It helps that llamas carry most of my gear.

Good luck with your condition. I might still have links to some of what I learned if you are interested.


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