If you’d like to share your stroke,PFO or migraine story and help me grow this blog for the benefit of others, please use this link to go to the posts others have already shared then consider adding your own.
If you’d like to speak to me personally, you can contact me at the above link as well or call my office 401-632-0868
Julie L., 
CindyW, 
Kristy B and 13 others are discussing. 
Amy Gezon 7:29 pm on March 1, 2009 Permalink |
I am 41 years old and last Thanksgiving I woke to find my left arm completely numb and unable to move, my first thought was, I have had a stroke. My husband was at work and my kids were asleep and I found myself strangely calm but unable to call for help. Slowly over 15 minutes or so I gradually regained feeling and seemed to return back to normal and dismissed it as my arm fell asleep. Since that time I have felt very dizzy, increased headaches, pins and needles on my left side, arms and legs, intermittent heaviness and numbness on my left side of my face as well as episodes of amnesia. I also developed galactorrhea (and I’m not pregnant or nursing). So my primary care doctor ordered an MRI to rule out a pituitary tumor, which showed numerous scattered hyperintensities and referred me to a neurologist. Prior to seeing a neurologist, I woke up at 4 am with crushing chest pain followed by intermittent fluttering in my chest, which my husband heard, (he is an ER doc) so he got me in with a cardiologist ASAP. They performed a stress ECHO which revealed a significant PFO. The cardiologist explained that Trans Global Amnesia is a very common symptom in people with PFO. I felt relieved that there seemed to be an answer….then,
I followed up with a neurologist, who went off on me saying that she didn’t get paid much for talking to me and that the cardiologist only spends 5 minutes with me, inserts a device and makes thousands, that 25% of the population have PFO’s and that chronic migraines can cause amnesia, numbness and auras. To me I don’t care if my symptoms were TIA or migraine related, it seems there is substantial evidence that both TIA and migraine can be attributed to PFO. Splitting hairs over what it was seems pointless.
I also mentioned to her that I felt better when the barometric pressure was high or when I traveled to sea level, I live at approximately 4800 ft above sea level. She asked in a skeptical voice “so you feel better when its sunny?” When I tried to describe feeling like I was going to lose consciousness as “somewhat out-of-body feeling”, she asked me if I had seen a psychiatrist for that.
Can anyone relate to my symptoms or experience? I am also a runner with a resting pulse 55-65 bpm, low blood pressure 100/70, 90/60.
The PFO relation seems logical to me so despite the grumpy neurologists opinion I am going to close it May 4th.
Thanks-Amy
SLC, UT
David 7:42 pm on March 2, 2009 Permalink |
Hi Amy;
Thank you for sharing your story. It is unfortunate that you have experienced the delays with your care you cited so well in your note. I hope you continue to “go with your heart” in making your decision to close your PFO. So many others have been faced with the same situation, basically the neurologists and cardiologists can’t agree on a plan of care. This is virtually the same problem as others report in their stories as well as what I personally experienced in making my decision to close my PFO. I can only tell you that it was the best decision I made, over 2 years post closure and still not a single migraine and I have my body and life back. Keep us all posted on your progress please.
Best Regards,
David Dansereau
If you missed my stroke story here it is:
http://knowstroke.wordpress.com/2006/11/16/david-dansereau-my-stroke-story/
Amy 7:07 am on June 22, 2010 Permalink
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!
Lisa DiMichele 7:59 pm on March 21, 2009 Permalink |
It still seems surreal to me….after so many er visits, neurologists, endocrinologists, rheumatologists finally an answer and validation.
After 20 years of suffering migraines with aura, two years ago I really became extremely sick. My friend and I were rearranging furniture in my house, bringing big stuff up and down the stairs; I really overdid it. I started feeling unusually exhausted from that day on and a week later suffered an acute sense of dizziness and numbness through my left side; I now am quite positive that was the first of a series of TIAs. Cat scan showed zip, however. The next week I was conversing with friends when suddenly my vocabulary disappeared, again numbness and tingling surged through my left side.
Within days,I became extremely weak and breathless, had tremors, and brain fog. I was bedridden for 3 months. I had blinding headaches. My husband had to carry me into my doctor visits. I really thought I was dying. During this time I had 2 lumbar punctures, MRIs, Spect scans, a Pet Scan, and numerous blood tests. Still, no answers. During one of my hospital stays, they discovered I had postural orthostatic hypotension with tachycardia, meaning that with posture changes my blood pressure would drop and my heart would race struggling to pump blood to the rest of my body. I also was always cold and developed Raynaud’s.
Last month after going to the er because I had fainted, the doctor decided to admit me to run some tests. A bubble echo was done and ASA with a PFO were found. To think that the problem was stemming from a heart problem and the doctors looked everywhere but there is, to me, mind-boggling. Shouldn’t they have known about the relation of migraines TIAs and PFOs? Needless to say I want to have the closure for myself and my family. I am 46 years old with a wonderful husband and 3 beautiful boys.
So far I have met with a thoracic surgeon who does the closure via open heart surgery; he definitely recommends that it be closed. He says he would either use my tissue or bovine tissue for the repair. He says to do nothing that requires exertion as that will force blood more rapidly through the shunt and increase my risk of tia or stroke. (Here I can correlate my exertion 2 years ago moving furniture with my downfall) I will also meet with another doctor that performs the percutaneous method. I want to know if with the percutaneous method they can be sure to cover the hole completely where the shunt is and that the device will not dislodge. It seems that with open heart surgery, because they doctor will come “face to face” with the heart, they can be more sure of a complete closure. I need to verify this though. What are you thoughts regarding this aspect?
I eagerly await the prospect of feeling good, daily activities are becoming a real struggle because of impaired oxygenation and orthostatic dypsnea. Your website has offered me great support and encouragement.
Thanks, Lisa
Betsy 4:29 pm on April 15, 2009 Permalink |
Hello! What a relief to find this in all this chaos and confusion! Get ready, I need to vent! My husband had a left occipital stroke on March 14. He is 39, and in otherwise perfect health. The neuro sent us to the cardio when he realized it was a stroke, to “find out where this clot could have come from in such a healthy guy”. After thousands of dollars he found a “tiny PFO”…and what really amazed me with your story is that he told us we are a “GRAY AREA”. And said take aspirin. We do not have insurance, but we have paid for all of this upfront. We feel like we are being totally ignored and dismissed. The last we heard, the cardio was going to “discuss” the results of the TEE with the neuro. That was 4 days ago. We are finding that ANY answers we get, we have to call multiple times for, and then they act like we are an annoyance. What is going on here?? IS there any real “health care” in the US?? This has already cost us $15 thousand and my husband is so upset that he hasn’t gotten ANYTHING for it. Also, my husband had NO symptoms, ever. No headaches, no physical problems at all. The only injury is to the left occipital lobe which has taken the right half of each eye’s vision field. And NOBODY has mentioned rehab, we are doing it all on our own through the internet. For 15 grand??? How could this be? Why are we so alone in this?
Jen 2:53 am on November 16, 2009 Permalink |
So I am in a very similar boat. Although, I am only 21, and had a ‘stroke’ this summer. Lucky for me the clot that could have been a full blown stroke happened to end up in my eye instead, killing 1/4th of my left eye but leaving my brain alone. They found my pfo 2 weeks later, and were shocked I had never had migraines. Although looking back I always had, but they affected my eyes more than my head so I never thought they were the same thing as the headaches that kept my sister home in the dark all day long. But three months ago (1.5 months after the clot) I started with the every day full fledged migraines. Fun stuff. Anyway, I have been fighting to get my insurance company to cover the closure for over 3 months now. They refused the device closure 3 times, and it looks like I am going to have some sort of surgery, possibly open heart surgery, on the 21st of december (when the semester is over). To tell you the truth, it is absolutely terrifying, and I can’t understand why they won’t pay to put the device in my heart, but would prefer to cut open my breastbone. I am glad to hear your closure did in fact reduce the symptoms. My worst fear is to have open heart surgery and be laid up for 6 weeks only to still have the headaches and heart palpitations.
David 12:34 am on November 17, 2009 Permalink |
Jen;
First let me start by saying “thank you” again for sharing your story. Immediately, after reading your post I got very angry*, not at you, but at the continued problem with the PFO/migraine/stroke medical/(insurance!) situation. I wish I could help directly by providing more specific advice here for you, but I don’t know the details of your particular case and don’t want to assume (ie. PFO vs. ASD and size of foramen, any possible clotting disorders,etc) I can only add from my story that the only reason I was allowed or approved to elect for PFO closure “off label” using the Amplatzer occluder was that I had ruled in for 2 confirmed strokes. I know, it sucks quite frankly esp. when I know you are already terrified about what to do and fighting freq. migraines now. ( I would ask your doc (+insurance) straight up if you had a second stroke would it change things/your course of care? Send them to my site to read some of the literature/pt. stories if it helps.
Pls. keep fighting this Jen, keep me posted and call me any time if you need more help.
I would like to approve / post your original comments “live” if you don’t mind (they are below) so I can continue to help others and demonstrate to docs/insurance/anyone who will listen that this is a huge medical problem.
*ps- I continue to be migraine free now for over 2+ years post closure and that’s why I get so mad when I hear SO MANY
stories just like yours b/c you should be getting the same help ASAP!
Best regards,
David
office 401-632-0868
my-nutrition-coach.com
my-physical-therapy-coach.com
know-stroke.org
VICKY ROI 2:33 am on March 1, 2010 Permalink |
Thanks for all the great information. I suffered a tia/stroke on july 4th 2010,lucky for me the clot went down my right arm with no damage. i’m 44 and in perfect health and wondered what would cause me to have a stroke. They did a tee and found the pfo.Their March date for surgery is full but maybe they can fit me in sometime in April.I was surprise at the different symptoms,Ive always been cold and the headaches behind my eyes, i believed to be sinus headaches.Thanks to Amy Gezon i don’t feel crazy anymore because i also feel better when the barometric pressure is high.I’m also tired alot, is that also a symptom.
David 2:34 am on March 2, 2010 Permalink |
You are not crazy Vicky, the fatigue seems to be a common symptom. I experienced it too. The good news, after closure I felt like I could run a marathon, and guess what, I eventually did!
Thanks for writing and good luck with your procedure. Pls keep us posted.
David Dansereau
know-stroke.org
CindyW 4:46 pm on March 11, 2010 Permalink |
Hi David,
Thank you for posting your story. I have been trying to find any and all information I can on PFO, as I was diagnosed with one this week. I had been having issues with my heart racing and beating hard. This MAY be attributed to anxiety, not sure if it is directly related to PFO. Anyway, I had an TEE done and they did the bubble test and saw that I have a ‘fairly large’ PFO and also have ‘right to left shunting’ which I guess means blood is flowing back and forth and can more likely cause a stroke. Luckily I am 40 years old and have not had any stroke symptoms.
I am waiting on blood test results that test if I have a heredity issue with producing more clots. I am pretty sure it will come back negative as my father had the same test and it came back negative. If it DOES come back negative he is going to just treat me with aspirin and not recommend surgery to close it.
My fear is that I am an avid runner and I completed my first marathon last fall. It was wonderful! I was looking forward to continuing with running and exercising as it is my escape from anxiety and it REALLY is good for my soul in so many ways. My doctor said he recommended I back off on my running and exercise. I almost started crying right there. I know it seems silly, but running is what defines me and I am afraid that I won’t be able to do it anymore and if I do I am going to be so overwrought about causing a stroke that it won’t give me that mental release that I so need.
I guess my question to you is, were you put on exercise restrictions after you were diagnosed? I can’t find a lot of information on this anywhere. And for my ‘peace of mind’ I’m wondering if I should try to get the PFO closed. Then again..I’ve gone 40 years without any issues. Just wondering your thoughts.
Thanks for taking the time to read this rambling post..
: )
David 9:44 pm on March 11, 2010 Permalink |
Hi Cindy;
I was in fact told to stop exercising and believe it or not to even “stop working” . The precautions I was given may have been a bit extreme, but the reason I believe I was given this warning was that I am a manual physical therapist, meaning I sometimes have to lift and hold sometimes heavy weight/ patients extremities during treatments. The big increased risk for possible shunting through the PFO (due to back pressure in circulation) seems to be when you are involved in activities when you are inclined to hold your breath. (ie) swimming, diving, weight lifting, childbirth (pushing) to give a few examples.
I should note I also by this time had ruled in for my second stroke, so I believe my physician was being more cautious considering my history. I was not able to even think about trying to run after my 2nd stroke because my balance was impaired and I was more concerned with trying to regain strength and balance. After PFO closure I was able to resume all activities with a gradual return to running after about a year (again mostly b/c of rehabilitation issues-stroke impaired strength and balance) .
I know you must be overwhelmed with your situation right now Cindy. Pls take the time to continue to read all you can and I would suggest to get more than one professional opinion. I always feel a bit uncomfortable trying to tell someone what is “best ” for their situation, but I know I advocated for closure after failing at medical management and the limitations it presented in my situation as far as being physically active moving forward.
I also shared your fear/frustration of doing nothing vs risking another stroke (in my case). Pls. reply any time if you have more questions. I hope this helps. I would also suggest If you have not already found the PFO group on Facebook you might want to do a google search for that group to help in your research/support.
I wish you well. Thank you for sharing your story and I hope you’ll update me on your progress as you learn more about your condition.
David Dansereau
know-stroke.org
Vicky Roi 5:04 am on March 12, 2010 Permalink |
DAVID. I WAS WONDERING ABOUT THE ASPIRIN WHILE YOU HAVE A PFO. MY DOCTOR SAID YOU CAN’T TAKE ASPIRIN WHILE YOU HAVE A PFO AND PUT ME ON WARFARIN. IS THIS TRUE.
David 2:54 pm on March 12, 2010 Permalink |
It depends on who you talk to Vicky and this seems to part of the bigger problem when it comes to treating PFO. A had docs argue between keeping me on Coumadin long term vs. using a full daily dose of aspirin, even using beta blockers “off label”. I honestly grew tired of all the confusion and mixed advice between neurologists and cardiologists and kept my blood thin with a low dose aspirin and through dietary means (mainly increasing my consumption of Omega-3 oils). You need to ask plenty of questions to your doc, including “why?” and what is the clinical evidence. Also, I’ve been getting reports from others that have contacted me here that Coumadin seems to be used less frequently these days in favor of Plavix. Here’s a link to a good presentation I posted recently that may answer some of your questions or give you more info to present to your doc:
http://knowstrokeblog.my-physical-therapy-coach.com/2010/02/28/coumadin-aspirin-or-pfo-closure-to-prevent-stroke/
Thanks for posting. Keep asking questions!
David Dansereau
know-stroke.org
Ernie Severino 8:06 pm on March 15, 2010 Permalink |
Hi my stroke was on 01/26/ 2006 I had suffered a ruptured brain aneurysm and had it from the brain surgery. It left my right arm and leg almost useless. I cannot drive and would like to return to work . I looked into bioness products for rehab . they are way out of my price range. my ins and Medicare will not cover it. was wondering is there any way to get these things to help people recover .
David 12:41 am on March 16, 2010 Permalink |
Hi Ernie;
You might try looking at the Biomove. It works on the same principle as the bioness unit-EMG with biofeedback I found the Biomove to be more flexible as you can use it for both upper and lower extremity training, and I believe it is less expensive than bioness. Try biomoveusa.com by Amjo Corp. to learn more. (Last checked they had a monthly rental / lease program-ask for Chris Cane
Hope it helps you!
Best,
David Dansereau
know-stroke.org
Eugene Walton 6:26 pm on April 6, 2010 Permalink |
Hi David – A year after my PFO closure I suffered a severe migraine that may have caused me to loose my speech processing ability for a short while. I was taken to the ER, administered lots of tests and thankfully, my speech returned after a few hours and no longterm damage was diagnosed. I had been on a combination of plavix, full sytrength aspirin and a couple of omega-3′s every day. I was reduced to plavix, a baby aspirin and continued with the omegas. I had further headaches – any ideas?
Vicky Roi 12:48 am on April 17, 2010 Permalink |
HI DAVE:
GREAT NEWS, I HAD MY PFO SURGERY ON APRIL 14TH AT UNIVERSITY HOSPITAL LONDON,ONTARIO.I FEEL FANTASTIC. THE SURGERY TOOK ABOUT 1 HOUR. THEY USED 2 CATHETARS1 IN THE VEIN AND1 IN THE ATERY IN THE GROIN.THEY STITCHED THEM IN, IT TOOK ABOUT AN HOUR AFTER SURGERY AND THEY PULLED THEM OUT. THE HARDEST PART WAS LAYING STILL WHILE THE GROIN PUNTURE SITES CLOTTED, THIS TOOK ABOUT 2 MORE HOURS AND THEN I WAS ABLE TO GET UP. I CAME HOME THE NEXT MORNING,NOW TAKING PLAVIX AND ASPIRIN.I’M SO GLAD I HAD THIS SURGERY,
David 11:55 pm on April 23, 2010 Permalink |
Vicky;
Great news indeed. I hope you are feeling inspired, energized and relieved all at the same time. Thanks for your update. Continue to keep us posted please.
Leigh Perry 3:22 am on August 6, 2010 Permalink |
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!
Candi 6:51 pm on September 7, 2010 Permalink |
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!!!
David 3:44 pm on September 13, 2010 Permalink |
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
Talena 7:05 pm on October 4, 2010 Permalink |
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
Leigh Perry 2:59 am on October 16, 2010 Permalink |
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.
Leigh Perry 11:38 pm on May 15, 2011 Permalink |
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
Kristy B 3:04 am on October 2, 2011 Permalink |
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
CindyW 10:41 am on October 6, 2011 Permalink |
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.
Julie L. 5:45 pm on October 6, 2011 Permalink |
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/