Comments on: Share Your Story/Contact Me http://knowstrokeblog.my-physical-therapy-coach.com A stroke/PFO (Patent Foramen Ovale) awareness blog by David Dansereau dedicated to removing the "gray areas" and understanding the connection between the heart and the brain Wed, 30 Nov 2011 16:35:07 +0000 hourly 1 http://wordpress.com/ By: Julie L. http://knowstrokeblog.my-physical-therapy-coach.com/share-your-storycontact-me/#comment-2697 Thu, 06 Oct 2011 21:45:53 +0000 http://knowstroke.wordpress.com/?page_id=118#comment-2697 Hi, Kristy – We have patients in our group that have more than one device, and a patient who had repair via Robotic surgery. I don’t know the answer to your particular question, but you might find others to bounce questions off of by browsing through the posts. Facebook has changed the group format so it is hard to follow specific topics of discussion at this point, but we are hoping to launch a new website soon that will have a forum for specific discussions. We are a friendly group and happy to help if we can. PFO Research Foundation – http://www.facebook.com/groups/106434738635/

]]> By: CindyW http://knowstrokeblog.my-physical-therapy-coach.com/share-your-storycontact-me/#comment-2690 Thu, 06 Oct 2011 14:41:58 +0000 http://knowstroke.wordpress.com/?page_id=118#comment-2690 Kristy,
I also have a PFO and I went for a second opinion at Mayo Clinic in Rochester, MN. I met with one of their cardiologists and unfortunately since I have not had any strokes I don’t qualify for PFO closure. (Whole other story). Anyway, if I was to have the PFO closed, they don’t use the discs. They use a robot like machine that only makes two “small” incisions on the chest and they actually stitch the PFO closed. (I hope I got that right). They have had great success with this she told me. In any case, if you want the name/number of the cardiologist I saw or if I can help in any way please let me know.

]]> By: Kristy B http://knowstrokeblog.my-physical-therapy-coach.com/share-your-storycontact-me/#comment-2625 Sun, 02 Oct 2011 07:04:05 +0000 http://knowstroke.wordpress.com/?page_id=118#comment-2625 Looking for some others that have been through this….My husband had a PFO closure done 2 1/2 years ago, we received a picture of the device closed around the hole. Last Sept. he had an epidose of stroke/TIA syptoms went to the E.R. was admitted several tests ran, nothing found. He was ok until June 2011 when he started experiencing the symptoms again…more tests…more everything is ok. He has been to the e.r. 2x’s in the past 2 wks for more of the same. More tests and more all ok. We are grwoing tired and asked for more tests i.e. another T.E.E. well this test revealed the hole is no longer closed and has opened back up a little. We are wating to here from our Nuro dr. and our cardio dr who did the surgeory that placed the 2 discs over the hole. I am looking for answers and help if anyone has had to re-do the PFO closure. His 1st one was done through his groin. I just wonder if if can be fixed or patched and if it would have to be open heart this time. Like I said he is only 29 and we have 3 small children so I am trying to reasearch this til the dr.’s call. Thanks to anyone that can help

]]> By: Leigh Perry http://knowstrokeblog.my-physical-therapy-coach.com/share-your-storycontact-me/#comment-1717 Mon, 16 May 2011 03:38:39 +0000 http://knowstroke.wordpress.com/?page_id=118#comment-1717 Hi David Wanted to say hi and tell you that Tyler is doing well and wanted to send you a special thank you ln his first anniversary.It will be a bittere sweet day May25th but Bill and I are sooo proud of him as well of all of the Stroke Survivors

]]> By: Leigh Perry http://knowstrokeblog.my-physical-therapy-coach.com/share-your-storycontact-me/#comment-783 Sat, 16 Oct 2010 02:59:53 +0000 http://knowstroke.wordpress.com/?page_id=118#comment-783 David-Hi!
I wanted to thank you for making yourself available to attend Tyler’s fundraiser! It was SO great to meet you and I apologize for taking so long to say so. Ty’s fundraiser went very well and I have learned a lot since then. Ty has spent the last two weeks at Sargent, being evaluated, and he has made many friends there. “Life throws you a curve” and I guess you try to catch it, right? We have caught the ball and we are throwing it to Ty now to see what direction he wants to take it. We just wanted you to know that your support has been OUTSTANDING and it was truly a pleasure to meet you- I do apologize for not taking more time to sit with you though, just talking with you would have been great.

]]> By: Talena http://knowstrokeblog.my-physical-therapy-coach.com/share-your-storycontact-me/#comment-756 Mon, 04 Oct 2010 19:05:43 +0000 http://knowstroke.wordpress.com/?page_id=118#comment-756 Hi David,
I came upon your site while searching for help regarding my husbands stroke/pfo closure. He had a stroke at the age of 35 earlier this year. Thankfully he has made an amazing recovery and getting better every day. They found no other medical reasons for this stroke but a pfo. The MRI showed a possible earlier stroke that we didn’t even know about. We were told to have the pfo surgery to prevent any further strokes. We did not know there was going to be any issues with our insurance until after the fact. We are now starting our second appeal and are trying to get as much information as we can. I would love to hear any suggestions from others that have gone thru this. I am praying that one day people will not have to choose the fear of facing another stroke because the health insurance companies won’t cover this option.
Thank you so much for taking the time to share these stories and information.
Talena King

]]> By: David http://knowstrokeblog.my-physical-therapy-coach.com/share-your-storycontact-me/#comment-689 Mon, 13 Sep 2010 15:44:45 +0000 http://knowstroke.wordpress.com/?page_id=118#comment-689 Hi Candi;
Thanks for your recent comments to know-stroke.org Our newly formed non-profit group, the PFO Research Foundation aims to help patients like you get answers. Pls. visit pforesearch.org. Our first PFO Summit is September 20,2010 in Washington,DC. You can learn about it through the links provided. I’d also urge you to check out our PFO patient group on Facebook for additional support. You didn’t mention where you live but by joining in on our Facebook group discussions you might be able to link up with someone in your area that can provide a referral. Also, you might learn more about some of the clinical trials in your area that could assist you with referral.
I wish you well,
David Dansereau
know-stroke.org

]]> By: Candi http://knowstrokeblog.my-physical-therapy-coach.com/share-your-storycontact-me/#comment-670 Tue, 07 Sep 2010 18:51:55 +0000 http://knowstroke.wordpress.com/?page_id=118#comment-670 Hi David,

I found your video on Youtube. What really drew me in was how you said your vision changed. I suffer from daily migraines and my vision changed the day I gave birth to my son. I was told I had a hole in my heart 28 years ago when I was born. However, the dr’s told my parents it eventually healed. I am going to get this checked asap but would love to talk to you about your vision symptoms. My vision color hasn’t changed, but I get migraine aura symptoms 24 hours a day. Everything looks kind of static like and shimmers. Sometimes I see Halos and tracers like some migraineurs do, but I believe mine is more often than others as it’s several times during the day if not all day at times. I believe I have had mini strokes, but unfortunately nothing has showed up on MRI. I sometimes find myself not knowing where I am and things look unfamiliar. This can last for 30 minutes or so and leaves me so exhausted. I am on the search now to find a good dr. in my area who might believe me about the mini strokes. This is all so frustrating as my baby is now 9 months and I have been fighting with my own body/brain for the same amount of time and I know I should be there more for him. I pray this is my way out!!!

]]> By: Leigh Perry http://knowstrokeblog.my-physical-therapy-coach.com/share-your-storycontact-me/#comment-609 Fri, 06 Aug 2010 03:22:01 +0000 http://knowstroke.wordpress.com/?page_id=118#comment-609 Hi David-it’s Leigh from Cumberland again and there was some talk around the town about how “different” it is to see so many children, in such a short period of time, having strokes. My mother-in-law is not happy about the fact that we don’t know where Ty’s stroke came from. She heard about RBST which is a hormone that some local dairy farmers are using on the cows to produce more milk. Recombinant Bovine Somatrophin is the name. She heard that there are serious consequences with this hormone and we were wondering if anyone has heard about this or could help us understand this better. Again, our thanks to you and for everything you are doing!!! PS We met Jamie and her mom Sharon at Hasbro when we were all doing rehab- small world! Thanks and you take care!

]]> By: Amy http://knowstrokeblog.my-physical-therapy-coach.com/share-your-storycontact-me/#comment-542 Tue, 22 Jun 2010 07:07:29 +0000 http://knowstroke.wordpress.com/?page_id=118#comment-542 It has been over 1 year and I have to say I am so glad I had my ASD closed (I had shunting at rest, no flap component) I may have treated 3 headaches since my ASD repair in May 2009, none of them migraine, no amnesia spells, no gasping for air in the middle of the night. I am greatful that they could close it without open heart surgery!

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