Comments for Know-Stroke.org http://knowstroke.wordpress.com A blog by David Dansereau dedicated to removing the "gray areas" and raising Stroke Awareness and the connection between the heart and the brain Sat, 07 Nov 2009 10:59:09 +0000 http://wordpress.com/ hourly 1 Comment on This is the story how a PFO caused my stroke by Another stroke survivor/PFO story « Know-Stroke.org http://knowstroke.wordpress.com/2006/11/16/david-dansereau-my-stroke-story/#comment-246 Another stroke survivor/PFO story « Know-Stroke.org Sat, 07 Nov 2009 10:59:09 +0000 #comment-246 [...] Comments Wendy Wright on Share Your StoryJen on This is the story how a PFO ca…Marsha on Surgery Update-PFO Closur…ginger on About this blog/My [...] [...] Comments Wendy Wright on Share Your StoryJen on This is the story how a PFO ca…Marsha on Surgery Update-PFO Closur…ginger on About this blog/My [...]

]]> Comment on Share Your Story by Wendy Wright http://knowstroke.wordpress.com/2008/02/11/share-your-story/#comment-191 Wendy Wright Wed, 09 Sep 2009 04:17:20 +0000 http://knowstroke.wordpress.com/?p=9#comment-191 For all those who have had a PFO/ASD, PLEASE make sure to check other family members to see if they have the same condition. Our daughter who turned 20 earlier this year had her PFO closed on April 2. She was having severe headaches and was seen by a neurologist. An MRI was preformed and 7 white spots were found on her brain. She was referred to a cardiologist for an echo with TCD test (bubble test). The TCD test had a ranking on 1-5 (5 being the highest), she had a 5. We are grateful we had it closed because she also had a deep pocket that could not have been seen on an echo. No amount of medication could have prevented blood clots from forming in the pocket area. The doctor was able to close the PFO and the pocket with the same device. Fast forward a couple of months....I decided to go in and have the TCD test done to see if I had the same problem. I did not have headaches but I was tired all the time. I also had a hard time exercising. As it turns out, the result of my TCD test was 5+. I was required to have an MRI and results of the MRI showed scattered white spots. My surgery is scheduled for later this month. We are in the process of having our other 3 children tested. (It is common that several family members can have the problem) I was told about a family in Idaho where over 30 family members have been tested and 2/3 of family members have the condition so far. This seems to be a genetic thing. I am in the process of contacting all my siblings and extended family to let them know about the potential problem. More people need to be educated about this. After all these years of feeling like garbage, I am thrilled to FINALLY figure out what was wrong and have the problem fixed. For all those who have had a PFO/ASD, PLEASE make sure to check other family members to see if they have the same condition.

Our daughter who turned 20 earlier this year had her PFO closed on April 2. She was having severe headaches and was seen by a neurologist. An MRI was preformed and 7 white spots were found on her brain. She was referred to a cardiologist for an echo with TCD test (bubble test). The TCD test had a ranking on 1-5 (5 being the highest), she had a 5.

We are grateful we had it closed because she also had a deep pocket that could not have been seen on an echo. No amount of medication could have prevented blood clots from forming in the pocket area. The doctor was able to close the PFO and the pocket with the same device.

Fast forward a couple of months….I decided to go in and have the TCD test done to see if I had the same problem. I did not have headaches but I was tired all the time. I also had a hard time exercising. As it turns out, the result of my TCD test was 5+. I was required to have an MRI and results of the MRI showed scattered white spots. My surgery is scheduled for later this month.

We are in the process of having our other 3 children tested. (It is common that several family members can have the problem)

I was told about a family in Idaho where over 30 family members have been tested and 2/3 of family members have the condition so far. This seems to be a genetic thing.

I am in the process of contacting all my siblings and extended family to let them know about the potential problem.

More people need to be educated about this. After all these years of feeling like garbage, I am thrilled to FINALLY figure out what was wrong and have the problem fixed.

]]> Comment on This is the story how a PFO caused my stroke by Jen http://knowstroke.wordpress.com/2006/11/16/david-dansereau-my-stroke-story/#comment-186 Jen Fri, 14 Aug 2009 20:03:25 +0000 #comment-186 David, I just found your blog and our stories are so similar - with the exception your in much better shape on the exercise side of things. In the fall of 2007, I had a series of unexplained events that lead me to see neurologists. I had a history of migraine with aura and the first thing my neurologist said was “lets get your heart checked.” This lead to many tests that follow the same route as you and I have a PFO. I also had MRIs and tests for everything under the sun. The incidents that lead me to them started with a really bad migraine with aura, I have only had a few in my life this big. This was different, I was getting tingling sensations in my feet and hands from this migraine, huge visual aura, as well as major fatigue that took over a year to recover from. It was as if I had been zapped and all my energy disappeared. After months of “getting better” in April of 08 I ended up in the ER after a migraine with aura gave me a num face, rapid heart rate etc., and basically panicked me. After CATS and MRIs TIAs were ruled out or could not be concluded. I was left scared and with a numb thumb for weeks. It’s very odd news to hear at you have a hole in your heart…what does this mean? I had so many questions and fears…and no answers. I too was told “if we have to fix we will but…” I was checked out and I’m still followed once a year by a cardiologist. I guess the frustration in all of this is when I now get a migraine, and since 2007 they have changed dramatically, I now have this PFO fear in my mind. I had a neurologist who would love to have it fixed – “just because you never know” and a “cardiologist” (whom I like) but admits I would have to enter a trail (which I believe this trial collapsed last year) and or to fit under insurance rules – have a stroke. I’m now on low dose aspirin and a beta blocker for the migraine symptoms but sorta feel like I’m living in a gray area. I have an increased risk by a percentage point because I have a PFO yet all the studies come back inconclusive that the PFOs are the cause for the auras, and will fixing it help? Maybe but lets not fix until you have a TIA or stroke? It’s an odd world to be in sometimes. I try not to think about it and hope I don’t have a stroke, if I do…one that is minor. Anyway – your story is very much like mine but I have not had a stroke or repair. Up to 25% of the population is a lot of people, 1 in 4, have PFOs...I do. JM David,
I just found your blog and our stories are so similar – with the exception your in much better shape on the exercise side of things.

In the fall of 2007, I had a series of unexplained events that lead me to see neurologists. I had a history of migraine with aura and the first thing my neurologist said was “lets get your heart checked.” This lead to many tests that follow the same route as you and I have a PFO. I also had MRIs and tests for everything under the sun.

The incidents that lead me to them started with a really bad migraine with aura, I have only had a few in my life this big. This was different, I was getting tingling sensations in my feet and hands from this migraine, huge visual aura, as well as major fatigue that took over a year to recover from. It was as if I had been zapped and all my energy disappeared. After months of “getting better” in April of 08 I ended up in the ER after a migraine with aura gave me a num face, rapid heart rate etc., and basically panicked me. After CATS and MRIs TIAs were ruled out or could not be concluded. I was left scared and with a numb thumb for weeks.

It’s very odd news to hear at you have a hole in your heart…what does this mean? I had so many questions and fears…and no answers. I too was told “if we have to fix we will but…” I was checked out and I’m still followed once a year by a cardiologist.

I guess the frustration in all of this is when I now get a migraine, and since 2007 they have changed dramatically, I now have this PFO fear in my mind. I had a neurologist who would love to have it fixed – “just because you never know” and a “cardiologist” (whom I like) but admits I would have to enter a trail (which I believe this trial collapsed last year) and or to fit under insurance rules – have a stroke.

I’m now on low dose aspirin and a beta blocker for the migraine symptoms but sorta feel like I’m living in a gray area. I have an increased risk by a percentage point because I have a PFO yet all the studies come back inconclusive that the PFOs are the cause for the auras, and will fixing it help? Maybe but lets not fix until you have a TIA or stroke?

It’s an odd world to be in sometimes. I try not to think about it and hope I don’t have a stroke, if I do…one that is minor.
Anyway – your story is very much like mine but I have not had a stroke or repair. Up to 25% of the population is a lot of people, 1 in 4, have PFOs…I do.
JM

]]> Comment on Surgery Update-PFO Closure by Marsha http://knowstroke.wordpress.com/2007/05/26/surgery-update-pfo-closure/#comment-164 Marsha Thu, 11 Jun 2009 13:38:38 +0000 http://knowstroke.wordpress.com/?p=8#comment-164 Dear Dave, On May 1, 2009, I had what was called a TIA or mini stroke and was hospitalized for 4 days with test after test done for those 4 day that came back with the doctor saying we dont know what happened and cant find the cause of it. I was release very fastrated into the care of a neurologist that beleive I was only experiencing seizers but will send me to a cardiologist anyway because it is recommended. At my cardiology work up he found a few things that to him did not look right like the fact that my lower extremities would turn blue if I sit for more than two mins and I told him I noticed it after I was released from the hospital and I was inceasininly out of breath doing things around the house that never happend before so off he sent me to do a TEE only to find a PFO in my heart on May 27, 2009. I did not think twice to get the surgery to get it fixed because I want my life back. I cant play with my kids that way I use to. I have so many headaches it is not funny, I am on so many meds until the surgery that I feel like I own the local CVS. Thank God my surgery date is on June 18, 2009. I am so inspired by your story that I wish it was today. Marsha Miami FL Dear Dave,
On May 1, 2009, I had what was called a TIA or mini stroke and was hospitalized for 4 days with test after test done for those 4 day that came back with the doctor saying we dont know what happened and cant find the cause of it. I was release very fastrated into the care of a neurologist that beleive I was only experiencing seizers but will send me to a cardiologist anyway because it is recommended.

At my cardiology work up he found a few things that to him did not look right like the fact that my lower extremities would turn blue if I sit for more than two mins and I told him I noticed it after I was released from the hospital and I was inceasininly out of breath doing things around the house that never happend before so off he sent me to do a TEE only to find a PFO in my heart on May 27, 2009. I did not think twice to get the surgery to get it fixed because I want my life back. I cant play with my kids that way I use to. I have so many headaches it is not funny, I am on so many meds until the surgery that I feel like I own the local CVS.

Thank God my surgery date is on June 18, 2009. I am so inspired by your story that I wish it was today.

Marsha
Miami FL

]]> Comment on About this blog/My PFO Story by ginger http://knowstroke.wordpress.com/about-my-pfo-blog-stroke-story/#comment-162 ginger Thu, 04 Jun 2009 03:40:21 +0000 #comment-162 I am 41 years old, in great shape, no past medical problems. I have had migranes with aura since I was 12 or 13 yrs. old. I got up last Thurs. morning to go to the gym and quickly realized something was not quite right. I was having numbness in my right hand, arm, leg. My husband convinced me to go to ER. After tests were done it was determined I had a left brain stroke, affecting my right side. After doing tests to rule out clogged arterties, etc....my neurologist recommended a TEE to see if it could be my heart. They found the PFO and also a very weak membrane between chambers. I had the procedure the next day that repaired the hole and floppy membrane. I am very lucky to have no impairments from the stroke. I doctor said that when it entered my brain it shattered into tiny pieces instead of one big glob. This is a good thing. I am now feeling better than new and have not a even a slight headache. The doctor said I can resume activity, even working out, when the incisions in my legs heal, which they are healed now. I have been a little nervous about resuming excercise????? I am on Plavix and aspirin. I am 41 years old, in great shape, no past medical problems. I have had migranes with aura since I was 12 or 13 yrs. old. I got up last Thurs. morning to go to the gym and quickly realized something was not quite right. I was having numbness in my right hand, arm, leg. My husband convinced me to go to ER. After tests were done it was determined I had a left brain stroke, affecting my right side. After doing tests to rule out clogged arterties, etc….my neurologist recommended a TEE to see if it could be my heart. They found the PFO and also a very weak membrane between chambers. I had the procedure the next day that repaired the hole and floppy membrane. I am very lucky to have no impairments from the stroke. I doctor said that when it entered my brain it shattered into tiny pieces instead of one big glob. This is a good thing. I am now feeling better than new and have not a even a slight headache. The doctor said I can resume activity, even working out, when the incisions in my legs heal, which they are healed now. I have been a little nervous about resuming excercise????? I am on Plavix and aspirin.

]]> Comment on Share Your Story by deena ouellette http://knowstroke.wordpress.com/2008/02/11/share-your-story/#comment-159 deena ouellette Tue, 02 Jun 2009 04:21:54 +0000 http://knowstroke.wordpress.com/?p=9#comment-159 I suffered a stroke when I was five years old. This was in the year of 1972. I want to thank you for sharing your experience. For years I thought that I was the only young person to have suffered one. It is comforting to know that I am not alone in this fight. Please stay strong and continue to be a voice for all of us. Unfortunatly there are cruel people who don't understand what we have been through, thier lack of understanding can make life for us very difficult. Please fight on for all of us. Thank you I suffered a stroke when I was five years old. This was in the year of 1972. I want to thank you for sharing your experience. For years I thought that I was the only young person to have suffered one. It is comforting to know that I am not alone in this fight.
Please stay strong and continue to be a voice for all of us. Unfortunatly there are cruel people who don’t understand what we have been through, thier lack of understanding can make life for us very difficult. Please fight on for all of us.

Thank you

]]> Comment on Share Your Story by Jenna Rasmusson http://knowstroke.wordpress.com/2008/02/11/share-your-story/#comment-157 Jenna Rasmusson Thu, 28 May 2009 15:42:34 +0000 http://knowstroke.wordpress.com/?p=9#comment-157 David, Thanks for your work on stroke awareness and Tedy's Team. I know you are familiar with AGA Medical Corporation. We have just launched a new stroke awareness campaign called TacklingStroke on Twitter, Facebook, and YouTube. It features video testimonials from professional football player Tedy Bruschi, who had a stroke in 2005, recovered fully, and was able to resume his career. Starting this week, we're posting important stroke awareness facts as well as links to resources, events, and organizations to our Twitter feed and our Facebook Group. We’ll also be linking to the TacklingStroke YouTube Channel, where every week we’ll be posting a new video of Tedy Bruschi discussing stroke warning signs and his own experience with stroke and recovery. The goal of the campaign is to educate as many people as possible about stroke, and hopefully help save lives. As you are a thought leader in the stroke awareness community, I hope you’ll consider mentioning our TacklingStroke campaign on your blog, and even participating in it yourself. Please feel free to embed our first video from YouTube if you’d like (http://www.youtube.com/user/TacklingStroke ). Thanks for taking the time to read this email. Please don't hesitate to contact me with questions, or suggestions about how we can make this stroke awareness campaign a success. Jenna Rasmusson Senior Market Development Manager AGA Medical Corporation CAMPAIGN LINKS: Twitter Feed: http://twitter.com/TacklingStroke YouTube Channel: http://www.youtube.com/user/TacklingStroke Facebook Group: http://www.facebook.com/group.php?gid=89631292815 David,
Thanks for your work on stroke awareness and Tedy’s Team. I know you are familiar with AGA Medical Corporation.
We have just launched a new stroke awareness campaign called TacklingStroke on Twitter, Facebook, and YouTube. It features video testimonials from professional football player Tedy Bruschi, who had a stroke in 2005, recovered fully, and was able to resume his career.

Starting this week, we’re posting important stroke awareness facts as well as links to resources, events, and organizations to our Twitter feed and our Facebook Group. We’ll also be linking to the TacklingStroke YouTube Channel, where every week we’ll be posting a new video of Tedy Bruschi discussing stroke warning signs and his own experience with stroke and recovery.

The goal of the campaign is to educate as many people as possible about stroke, and hopefully help save lives.

As you are a thought leader in the stroke awareness community, I hope you’ll consider mentioning our TacklingStroke campaign on your blog, and even participating in it yourself. Please feel free to embed our first video from YouTube if you’d like (http://www.youtube.com/user/TacklingStroke ).

Thanks for taking the time to read this email. Please don’t hesitate to contact me with questions, or suggestions about how we can make this stroke awareness campaign a success.

Jenna Rasmusson
Senior Market Development Manager
AGA Medical Corporation

CAMPAIGN LINKS:
Twitter Feed:
http://twitter.com/TacklingStroke

YouTube Channel:
http://www.youtube.com/user/TacklingStroke

Facebook Group:
http://www.facebook.com/group.php?gid=89631292815

]]> Comment on 26.2 has been the only number on my mind by jack ferreri http://knowstroke.wordpress.com/2009/04/21/262-has-been-the-only-number-on-my-mind/#comment-156 jack ferreri Fri, 22 May 2009 20:44:20 +0000 http://knowstroke.wordpress.com/2009/04/21/262-has-been-the-only-number-on-my-mind/#comment-156 David-- Congratulations! just 18 years after your first one---- You are the man. Jack David–
Congratulations! just 18 years after your first one—-
You are the man.

Jack

]]> Comment on Recruit the right Physical Therapist as Your Stroke Coach by Dean Reinke http://knowstroke.wordpress.com/2008/10/29/recruit-the-right-physical-therapist-as-your-stroke-coach/#comment-148 Dean Reinke Fri, 15 May 2009 17:15:24 +0000 http://knowstroke.wordpress.com/?p=101#comment-148 As a survivor of a massive ischemic stroke I know that neuroplasticity is working for me. But the main problem I see is that I have a large dead area that needs to move control to another area. The neuroplasticity that has already occurred for me is probably from the penumbra of the stroke. What has been proven in getting the start of motor control moved to another location? Once started I can use the usual methods to make it work better. Dean As a survivor of a massive ischemic stroke I know that neuroplasticity is working for me. But the main problem I see is that I have a large dead area that needs to move control to another area. The neuroplasticity that has already occurred for me is probably from the penumbra of the stroke. What has been proven in getting the start of motor control moved to another location? Once started I can use the usual methods to make it work better.
Dean

]]> Comment on Share Your Story by Amy G http://knowstroke.wordpress.com/2008/02/11/share-your-story/#comment-145 Amy G Fri, 08 May 2009 02:18:40 +0000 http://knowstroke.wordpress.com/?p=9#comment-145 I had my ASD/aneurysm repaired on 5/5/09, I feel great, so far no headache. I was told I would feel chest fluttering, but I had so much of that prior to the closure that the irregular beats and fluttering are improved. I would think that I had some placebo procedure, were it not for the CD of my procedure and the follow up echocardiogram. It's hard to believe that you would have to endure open heart surgery to close these defects in the past. So far no headaches, and my mind seems a little less fuzzy! I had my ASD/aneurysm repaired on 5/5/09, I feel great, so far no headache. I was told I would feel chest fluttering, but I had so much of that prior to the closure that the irregular beats and fluttering are improved. I would think that I had some placebo procedure, were it not for the CD of my procedure and the follow up echocardiogram. It’s hard to believe that you would have to endure open heart surgery to close these defects in the past. So far no headaches, and my mind seems a little less fuzzy!

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