If you have arrived at my blog after searching for information on PFO,stroke,migraines and/or are researching the connection between the heart and the brain, I’d like to hear from you. Please consider sharing your own story, or if you’d prefer to reach me in private I can be contacted using the form below.
If you’d like to read some of the other stories that have been posted, simply click on the comments link below to read more or post your own story.
Know-Stroke.org | A Guide to Stroke Awareness & Advocacy | Survivorship | Technology and Rehabilitation | 
How do I contact you? How will you respond to me??
Any time you leave a comment on my blog I receive a note that alerts me. Your email is available to me to reply directly to you but your email will not be visible on my blog. I will respond to all posts as soon as I can get to them. Please use the contact form above to correspond to me directly. If you indicate in your post to keep private I will not post your comments. Otherwise, if your story is related to the PFO/Stroke/Migraine conversation and your comments help contribute to the dialogue I will make them “live” for others to share.
LikeLike
Hello,
Thank you for sharing your story. Like you were, I am 39, have always been in good health, and have recently discovered I have a moderate PFO. I learned this only after an event 6 weeks ago in which I had numbness, speech disturbance, impaired consciousness, confusion, inability to remember my kids’ names or what year it is. These symptoms lasted longer than 12 hours. It then took me 2 weeks to get my full memory (what’s this new CD–oh, it was a chrismas present from my husband?) and cognitive abilities (where do the dishes go when emptying the dishwasher?) back to normal. I’ve had migraine with aura my whole life, and with these I’ve had numbness, aphasia and confusion, but never lasting for longer than a few hours. My MRI was normal and therefore my headache doctor (a neurologist) says the event was a migraine. I’m now on low dose Topamax to prevent migraine. I continue to take the baby aspirin I started a year and a half ago which almost eliminated my migraines.
I am worried I will have a stroke and am interested in closing the PFO for both stroke prevention and migraine prevention. But I’m not eligible for clinical trials because I don’t have migraines as often as 4x per month. And I haven’t had a stroke yet so I can’t get it done without a clinical trial, as far as I can tell. By some definitions the event I experienced was a TIA, and perhaps that could qualify me. My blood pressure has always been very low, and I’m thin naturally. But with stress from work (and from having small kids and no free time), I’ve started to get near hypertensive peaks at work. I used to run (even did long distance as a kid) and be very active, but now I struggle to exercise even once a week. I feel I’m a timebomb. Do you have any advice about PFO closure?
I look forward to hearing from you.
Sandy
LikeLike
Sandy;
Thank YOU for sharing your story. As I mentioned to you on the phone today so many other individuals have contacted me about similar events but would not go on the record to put their story out there. I feel very strongly that it is so important to build a forum to share insight and common experiences. As I mentioned to you, I know how I felt when I was searching around for answers and could not find a real voice or person to talk to who had opted for PFO closure. After our discussion, I plan on going back to some of my old notes and fill in some of the voids I left out during my recovery. I think it will be useful for all who may be considering the option I selected.
ps-I’ll pull together the contact information I promised you and email directly
Thanks again Sandy for your story and please keep me updated.
David
LikeLike
posted for Melissa by David (originally appeared in ABOUT section)
Melissa Smith Says:
February 28, 2008 at 1:06 am
Hello,
I found your story and it struck me so profoundly that we are so very much alike in our case history.
I am 38 with three children and husband good shape, non- smoker, BP of 98 / 68 decent cholesterol and had a TIA / Small Cryptogenic Stroke in Oct. 2007. My history of migrane with aura goes back many years and two years prior had an “event” that sent me to the emergency room only to be told that I took a medication too close together and and was sent home with no further testing. 6 months later after telling my physician about recent unexplained panic attacks that I was having before falling asleep , episodes of vertigo, aura without migraine and numbness in the back of my head, I was sent for an MRI / MRA which showed an infarct or small “white” spot. I went to the Cleveland Clinic for testing for MS and was told that most likely that my symptoms were Migrane related , the spot she was “unimpressed” with and felt that it could have been there since birth and the other symptoms were for lack of words “in my head”. Very frustrating. Life goes on.
This leads up to Oct. I was coming back from a business trip with a friend (thankfully she was driving) and my right side started to go numb. It started with my face including my eye and tounge and radiated into my arm and leg. It stunned me at first and I thought I had pinched something and began to slap my face and arm and jerk at my leg trying to get the feeling to come back. It seemed to only last a few minutes and started to go away . By then , I felt that the likelyhood of a panic attack were good so I popped an ativan and took an excedren migrain tab which I had in my purse. Since my vision seemed blurred ( not like the aura) but I was hoping it was a migrane related incident. After some time passed I tried to make light of it and saw a Dr. the next day. I had an MRI / MRA which in fact showed the TIA. The Radiologist was even able to tell me that it was within the last three days not knowing when I had the event. Two days later I had reisdual arm weakness and became very upset and landed in the emergency room. Was sent via ambulance to UPMC to rule out another event and from there I had numerous blood draws for clotting disorders etc another MRA, an Echo all showing nothing but the previous event that week, which was a relief. I was put on Aggrenox which made me horribly sick for about a week. It was awful but I knew I had to take it until they figured out what was going on. It was when I had the TEE the PFO was discovered. My cardiologist felt very strongly that it was in fact the culprit. At this time I had been seeing a Neruo at UPMC in Pittsburgh and he discussed with me that there was a Cardiologist at the hospital in connection with him that was taking part in a PFO / Stroke / Migraine with Aura study and the Starflex closure device. I went to see him and after discussing all my options I rolled the dice and joined the study and was dealt the card to rec’ the closure device. I went in just on Valentine’s day for my surgery and during the proceedure they discovered that I also had an ASA ( atrial septal aneurysm) next to the PFO that they repaired at the same time. The surgery went very well, the staff was wonderful and I am feeling great other than the fact that I threw my back out 3 days after due to not putting much weight on the leg that the surgery was done on and bent down to pick something up and presto! Muscle spasm for 3 days.
I am feeling so blessed and fortunate by having the small signs that led to the surgery since so many others were not so fortunate. Other that thinking that I am a little forgetfull once in a while I do not have residual effects and cannot wait until I can get back “normal” soon. I am very positive and am a huge Oprah fan and saw that you had some ah ha moments from her show. I too have had this same feeling and am currently reading the New Earth Book and look forward to making some really positive changes in my life and living to the fullest . There was a fellow Cardiologist at my local Heart Dr. that was the same exact age as us whom did not fair so well and is relearning to walk and talk and will most likely never practice medicine again, I think this is why he felt so strongly that the PFO was the cause and wanted me to get it closed right away. My mother also knows a young man , I believe mid thirties also that had a major stroke at the dinner table with his wife and children watching and he told her that he had migranes with aura since he was very young.
I think there is a huge connection with this and I think that it is equally puzzling that so many are in our age group.
It was wonderful to read about your story and hope that by sharing mine you may gain something from it.
Sincerely,
Melissa
LikeLike
Hi Melissa;
Your story is so amazingly similar to mine. I appreciate you taking the time to share the details of your journey especially the time line on how you arrived at being able to close your PFO. Many individuals have called me “off the record”after reading my story and were told their best possible option for closure was to enroll in a similar study to the one you mentioned. The general feeling is that these individuals do not want to enroll because they want to get their heart defect repaired and not have to live with “Not knowing”. It is to that end that I stay motivated to help advance the education and recognition /screening for PFO/ASD. Each time I hear a story like yours my commitment is strengthened. Thank you. EVERY time I hear of a case where the results were not so good, like the examples you shared, I get angry that perhaps more could be done.
I just learned a short while ago of a high school boy in my area that went into his basement to lift weight and later was found dead. It was determined the cause of death was he had an undiagnosed PFO. I know that could have been me. and that is why I feel the most compelling point you shared in your story is when you described feeling blessed and fortunate and having the small signs that alerted you something was not right. Those signs and your outcome happened for a reason, in my opinion, as they did in my case. I hope I can count on you to help with this cause in the future. For now, sharing your story was a big help. Best wishes in your recovery, David
LikeLike
I’m a longtime distance runner and, as of 1998, a stroke survivor. My PFO was closed on June 25, 2007, in St. Louis, Mo. Thought Tedy’s story was pretty amazing as well. My personal history, including a link to a video of PFO closure, is here: http://stroke-of-faith.blogspot.com.
LikeLike
It all started with bunion surgery……….
In October 2005, at 49 years of age, I had bunion and 2nd toe hammertoe surgery on my right foot. As my particular case was a little more complex than average, I was required to be non-weight bearing and in a surgical cast from my toes to my knee for what was estimated to be 8-10 weeks. You know those medical “risks” they always tell you about but you never knew anyone that it happened to?? Well, it happened to me… DVT and PE (deep vein thrombosis and pulmonary embolism) in other words, blood clots. It seemed all had been going as well as expected until at about 6 weeks post op when I had a fall off my crutches and banged my knee (hard) on the landing of my kitchen step. I believe that was when the blood clot must’ve dislodged itself from the vein behind my knee and traveled to my lungs and heart. I didn’t immediately realize what happened. A few hours later, I became short winded and struggled a bit to move comfortably from one room to another in my very small house. I didn’t understand what was going on, and thought maybe my shortness of breath was due to my being overweight, or it was the start of bronchitis or some other respiratory ailment. After all, it was November… the Friday before Thanksgiving. My husband asked if I thought I should go to the ER. I said, no… let’s just wait. If it gets worse, I’ll go. I had an appointment scheduled with both my podiatrist and my internist on Monday and not wanting to appear a hypochondriac, figured this could wait until then. Over the weekend, my shortness of breath upon exertion continued, but really didn’t seem to get any worse…. And it only bothered me if I was up and about, not when I was resting.
On Monday, 11/21/05, the podiatrist visit determined that my toes were doing excellent! I didn’t bother to ask him about the shortness of breath; it didn’t seem to be foot related. I did ask though why the toe that was repaired for the hammer toe appeared to be bruising now 6 weeks after surgery. It looked a little purplish when I had my foot resting on the floor, but would go away when I elevated my foot (more on this later). He simply indicated that it was not unusual, sometimes that happens but should go away. I left his office, and continued on to see my internist.
It took a lot of effort to walk from the parking lot into my internist’s office. By the time I got inside, I was completely exhausted and was having a very difficult time catching my breath. My appointment was for a standard office call… med refills, etc. I mentioned to him my shortness of breath. He listened to my chest and didn’t like what he heard. He told me to go over to the hospital and have a CT scan done, just to be on the safe side. He said if all is well, they’ll send me home… if not, I’ll probably be admitted. I did as I was told, again walking from parking lots to buildings two more times before the long walk down the hallway to the Radiology department at the hospital, stopping about every 5 steps to catch my breath and take a sip of water. I don’t know why it never once occurred to me to ask for a wheelchair. Thankfully my mother had been with me all day, and was lending assistance both in driving and walking.
The technician performed the CT scan and when finished told me “ok, go on home and if the radiologist sees anything your doctor will call you”. I was surprised that no one was going to look at the x-ray right away since my doctor had said they might keep me. But, who was I to argue? I left the examining room and with my mother beside me began my decent back down the hallway readying for our leave. Moments later one of the two technicians came rushing out of the examining room calling my name and pushing a wheelchair. She asked me to sit down and to please wait in the patient waiting room for a couple of minutes. She seemed worriedly anxious, so of course this concerned me but I really didn’t know what the cause of her anxiousness was. A few minutes later she came out and sat with me, explaining that the radiologist had not yet looked at the x-ray, but the other technician saw what appeared to be blood clots. He told her to “catch me” before I left and have me wait. After the radiologist read the x-rays, the technician came out again and explained that I was going to need to be admitted for the doctors to do more tests. After a long day and evening of doctor appointments and waiting in ER I was finally admitted to my local regional hospital
I was told not to get out of bed. I wasn’t to move around much because the doctors were concerned about the clots dislodging and causing a stroke. The next day, the cardiologist from my intern’s office came in to speak with me. He explained that in addition to my lungs being heavily peppered with PE (pulmonary emboli) I also had a clot in my heart. He wanted to do more tests before deciding how to address this issue. I spent most of Tuesday and Wednesday having tests and waiting on specialists to examine the results.
On Wednesday evening, the cardiologist again spoke with me and explained that a very large PE (a 7” clot) had lodged itself in a hole in my heart and every time my heart pumped, the tail of this blood clot was being sucked into the mitral valve. (At this point in time, I did not know that this hole had a name… PFO). The fear was that any excessive movement could cause a piece of the clot to break off, get sucked through the mitral valve and travel to my brain causing a stroke. Suddenly, my entire life was changing and I had no control over it. I felt like a ticking time bomb. Particularly after my cardiologist told me that after 25 years in practice… “I’ve never seen the likes of this before!” He admitted that he didn’t have a clue as to how to proceed, and was very hesitant to go in after a clot for fear of dislodging it and making matters worse. He wanted to contact other specialists for their opinions.
I spent the next 4 days lying in that hospital bed…. waiting. For what, I wasn’t sure. I cried. I prayed. I cried some more. What was happening to me? Was I going to die? No one could give me assurance either way. Thanksgiving came and went. My cardiologist wanted to have an IVC filter placed into my vein to prevent more potentially fatal pieces of PE from traveling from the DVT in my leg up to my lungs. The vascular doctor didn’t agree. So many people… so few decisions. I felt hopeless. My husband became agitated and tired of playing this waiting game. He called a very dear friend of ours who is a nurse in the vascular department at the University of Michigan hospital in Ann Arbor, MI and he asked for her help. “How do we get Vicky out of this hospital and transferred to U of M Hospital?” She quickly got the ball rolling and had the vascular doctor that she worked for agree to admit me. After 7 days in the local hospital with virtually no change in my condition, just waiting, I was being transferred to a state of the art Level 1 trauma hospital. No more fooling around!
I arrived by ambulance at the U of M Hospital, and after a brief assessment was taken into OR for the placement of the IVC filter. Dr. Thomas Wakefield, my new vascular surgeon, was taking charge! Within two hours of my arrival at U of M I was “filtered” and back in my room to finish up the registration paperwork. I had a new sense of hope. I felt that at least things weren’t going to get any worse at this point.
Twelve hours later, my heart was literally in the hands of Dr. Stephen Bolling, cardiac surgeon. He performed open heart surgery on 11/29, utilizing a cardiopulmonary bypass to take over the work of my heart while he removed the clot from the IVC (inferior vena cava), the right and the left atrium. He later shared with me that he had never seen a clot that large before, and this was only the second time he had ever had to perform this particular surgery – removal of a cardiac mass from a Patent Foramen Ovale (PFO).
The next few weeks were a struggle. I remained in the hospital. My glucose levels went out of whack, my liver went into shock from all the pain killers I was on, my mental state was deteriorating, my veins were collapsing from all the blood draws, my PT levels were not stabilizing. I was in the ICU twice more while the hospital staff tried to regulate my meds and get my liver working again.
All the while, remember my hammertoe…. It was now 12/4 – 13 days after being admitted to the first hospital. My toe was becoming an increasingly darker shade of grey/purple/blue/black. Dr. Wakefield felt that it would probably recover, and had been caused by yet another clot traveling in the opposite direction, thus blocking the blood flow in a vein going to my toe. At this point, he just wanted to keep a watchful eye on it. The cast had been removed upon my admission to U of M, and therapy had me ambulating with a walker and an air cast in order to recover from the heart surgery. My toe hurt so badly whenever gravity caused blood to flow downward. I swear the pain I had in my toe superseded ANY pain I felt after heart surgery! As well, my legs and feet started swelling. The stitches from bunion surgery were now ripping apart. It was so hard to walk through the pain. My husband is a believer of “tough love”. He pushed me to walk. I wasn’t the best patient, believe me. I am stubborn and obstinate. It HURT so badly to walk! I didn’t want to do it!
On 12/6, it was determined that my toe had become gangrenous and would need to be amputated. Dr. Wakefield wanted to wait a few more days to allow more time for demarcation (the process where a clear delineation of good/bad tissue could be assessed). I was still having a few other problems with atrial fibrillation and the stabilizing of my anti-coagulation levels, so I remained in the hospital.
On 12/13, I went into surgery for the 3rd time in the past two weeks. This time to have the gangrenous toe removed. I was both saddened and relieved. I was sad, of course, to be losing a piece of my body. On the other hand, I was in SO MUCH pain that I thought if this is the ONLY way to get some relief… then get rid of that toe!
On 12/16, I was sent home to recuperate. If walking had been a chore BEFORE the amputation, walking became even MORE of a chore afterwards. The pain was beyond belief. I don’t know what I expected, but it wasn’t this! The bunion surgery had been uneventful. Even the discomfort from heart surgery had been well managed with medication. But THIS… oh my goodness… nothing brought relief to the pain in my now missing toe. Again, heart therapy required that I walk… foot therapy required that I keep the foot elevated. What a conundrum! Either way I was at odds. I continued to be stubborn about walking, because of the pain in my foot. Both of my feet continued to be severely swollen and any pressure at all made the skin feel like it was ripping. I have paid for that stubbornness since. It took much longer than necessary to regain my endurance and lung capacity.
It’s been a long struggle back to living a slightly more compromised, but comfortable life – well over a year. I am currently about 95% back to normal (for me). I’m lucky to be alive… many a doctor and nurse have reminded me. The statistics for death with DVT and resulting PE are astonishing. I am one of the lucky ones. I am a survivor.
LikeLike
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!
LikeLike
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
LikeLike
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
LikeLike
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.
LikeLike
My son Tyler suffered a stroke at the right MCA territory. Unlike your stroke Tyler was checked for a PFO and his heart showed no abnormalities. This being very good news, he was examined for anything and everything else under the sun. At 14 years old, Ty ‘s situation baffled the doctors and I guess you could say “annoyed” them too. It was a very frustrating time for Ty and the doctors because they were concerned with finding the source so that there would be no “repeat offender”. We spent two weeks at Hasbro (WONDERFUL) hospital where numerous tests were done and then we were finally released to Spaulding Rehab in Boston with the medical exams to continue under the Mass Genneral Stroke team. Again I can’t say enough about the care we received! Unfortunately for all, the source of this unfortunate incident was never fully discovered and now we are both back at home working hard in three different therapies (why they are not fully covered for situations like this is beyond me!) but he has done remarkably well with his own determination, lots of care and advice and support from everyone. We have learned alot and still need to learn more so any advice or ideas from others is absolutely welcome! Thanks for the book David! Sincerely Leigh Perry-Ty’s proud mom
LikeLike
Hi Leigh;
Thanks for sharing Ty’s story here. Pls. let me know if I can be of any help. I am working on trying to make available more resources for stroke survivors as well as improve education through this advocacy blog as well as with my work with the ASA/Tedy’s Team and our newly formed PFO Research Foundation. As you pointed out, there is so more work that needs to be done with stroke detection, education, and coordinating comprehensive, effective rehab strategies that will get reimbursed fully (especially for young survivors!!). I’d be interested to know more about Ty’s journey and specifically what you all could use for additional help.
In the meantime, if it hasn’t already been suggested to you, pick up a copy of the book Stronger After Stroke by Peter G. Levine, it is a wonderful resource for survivors and caregivers. Also, I had reached out to both Bill and Sharon, so I am glad we have made a connection. Keep me posted or call if I can be of further help to Ty and your family.
ps- Not sure about the BGH connection with stroke but I do know there are many environmental factors contributing neg. to our health.
Try http://ewg.org/ to look it up
LikeLike
I just found out I have a PFO after a cerebellar stroke and ministroke in 27 months. I am 45. Should I be scared to do cardio, how much, how long, what should I avoid? Thanks Dave, I appreciate reading something from someone who seems a lot like me.
LikeLike
John;
I really wish I had a definitive answer for you or a resource to direct you to for the answers. I am looking for the same answers. I hope this explanation helps
http://knowstrokeblog.my-physical-therapy-coach.com/2010/10/07/exercise-guidelines-for-pfo-patients-needed/
Also pls try our patient discussion forum at PFO Research Foundation if you haven’t already reached out for help there:
http://www.facebook.com/group.php?gid=106434738635#!/group.php?gid=106434738635&v=wall
Thanks for sharing,
David
LikeLike
hello david,
my name is myles (41 years old) and i live in the UK and just came across your site relating to PFO. in april this year i suffered a stroke and following tests they concluded i had a PFO. i have been suffering from migraines for about 10 years and did go to my gp but no tests were completed. i put it down to stress from work. i am also a registered nurse but was not aware of the connection between migraines and PFO as this was not my area of nursing. on the night i suffered a stroke i was taken to A&E dept and told them for about 2 hours i was unable to move my right arm or leg. eventually i recovered and that night was sent home. i was sent for tests but the medics thought it was just a bad migraine untill i had a CT and MRI scan and they started me on asprin and parsantin. i finally had a bubble echocardiogram which indicated a PFO, but took 3 months to find this out. i was off work for two months and now back. i am on a waiting list for the PFO closure which i hope will be end of october, but am scared. it was good to see your site and the other people who has suffered the same thing as me. is there any advise you can give me? how did your feel after the operation?. finally, im glad i came across this site now and its been very helpful.
many thanks
myles
LikeLike
I am 58, almost 59 (in Jan) and had my life saved by the ads that Tedy did regarding stroke defense. I had just had an arterial bypass operation in my right leg and was talking to a nurse practitioner regarding pain management. I realized that my left arm had gone numb and I did not seem to be able to speak properly. This was mentioned to the nurse practitioner and she agreed that I was having a stroke. Turned out that I had 4 tia’s and am now on warfarin as a blood thinner and will have the hole in my heart repaired after I recover from the arterial bypass. If not for Tedy’s ads and websites such as yours, I would not have known what was going on and might have not come out of it with minimal damage. Thank you for the work that you folks do. Paul
LikeLike
Paul;
Thank you so much for sharing this. I appreciate knowing that you were helped by this website and Tedy’s PSA’s. You’ve made my day and I plan to pass your message along to #54 so he keeps spreading stroke awareness. Thank You and I wish you all the best!
David Dansereau
know-stroke.org
LikeLike
David, just an update on what has been going on with me. The only artifact of the tia’s is some weakness in my right hand when I try to grip something such as a knife, fork or pen. Typing with my right hand can be comical also. I have found something that might help others with this artifact; squeezing or trying to squeeze a worry ball or Spaldeen seems to help with the strength in my hand and doing 1 hand curls with a 5 pound dumbell is really helping with arm strength. Hope that this post will help somebody. Paul
LikeLike
David, thanks for the response and one of these days I hope to thank Tedy personally. Paul
LikeLike
Hello, I found your blog today as I was looking for information on Stroke and PFO’s. You see my husband had a stroke event last January. And as I read your story I was crying as I saw so many similarities. My husband had always suffered from migraines, sometimes worse than others. But with a family history of them, there was no real concern by doctors. As he was working last January he suffered stroke symptome and also kept them to himself. He told me, but he was not overly concerned. One thing led to another at an annual visit to his neurologist and they ran tests and detected the PFO. He did have surgery to repair the PFO in September of this year. With 2 small children at home, we consider ourselves very lucky that the detection was made and that the medical group in Boston reviewing his case, thought he was an excellent candidate for the surgery. Good luck to anyone that finds themselves in this situation. He is doing great and no regrets about moving forward throughout all of the tests and multiple doctors that helped us along the way.
LikeLike
For Immediate Release
June 23 2011
Stroke Victim Plans walk across Country
To bring awareness to this devastating
And debilitating disease
Russell Michael Plans a Cross-country walk to visit his Mother in a rest home on the East Coast, Russell a Stroke victim diagnosed with chronic micro vascular stenosis is willing to take the risk, in order to bring National attention to this devastating disorder. Russell A veteran, is under Veteran Care at the Los Angeles Facilities, He is going against Doctor Recommendations, and Russell was just, approved for double knee replacement surgery, walks with a Kane. The plan is to walk from His Film Studio in California that just hosted the Music Video “Run the World Girls” by Beyonce Knolls. Russell the studio owner has hosted many major films and music video such as Pink’s ‘Fun House”, Blink 182, and Country star, Derricks Bentley’s “Waiting for a slow Down”, “Monster in law” with Jennifer Lopez, “Tip Toes” with Matthew McConaughey and Kate Beckinsale, and Many other films and Videos!.
The cross-country walk will end at the Veterans hospital in Baltimore Maryland with a stop to meet up with my two autistic grand Children, for the last leg of the walk in hopes the boys will join, their Grand Father on the last few miles. Russell who has not seen his Mother or Grand Children in 8 years is unable to drive. Fears a long plane flight might create clots, I have decided that my stroke was for a reason, that I should do something to help others and bring awareness to this devastating disorder. When considering other forms of transportation I came up with the idea of walking, since I was, gifted, with the ability to walk, after the trio of strokes I suffered. Bringing National awareness to the causes of strokes seemed to be why I was, spared total devastation, by this debilitating disease.
Brain disorders no matter how received are even in there least forms are devastating and always debilitating in some manner. Strokes are becoming more and more common among the young, with all the worlds stress and threats placed on young people today, it is no wonder!
The Veterans administration is leading the way in head trauma and the effects of it. This research and quest by the veterans administration is leading to greater understanding of strokes and there causes, effects, prevention and cure. I hope to shed light on the great work by the veteran’s administration is doing and to bring awareness to those at risk of having a stroke. Only through national awareness, can this be done, so walking away from my dream of owning a major film studio, is a small cost. I also, in a strange way feel this was the only way; I would walk away and take time to visit, My Mother and Grand Children.
LikeLike
I am not much of a blog person, but I am tired of trying to figure this thing out and not having answers. I, at the age of 31, suffered a stroke. MRI results showed I had already suffered 2 TIAs prior to the stroke. I am lucky that my recovery has been well. I had a PFO, which was previously undiagnosed, and had it closed a month after my stroke. A year and a few months later, I am still suffering migraines. My neurologist thinks that it has no connection now to my PFO, my cardiologist feels it is the PFO. It is not 100% closed, but they say that it is highly unlikely anything can pass now. Well, it is highly unlikely a 31 yr old has a stroke, so…. My husband is worried and wants to pursue Mayo Clinic. I have 2 young children and want to live life not worried that I will stroke out or suffer a “complicated migraine.” I am enormously relieved to find this site, but wish there was some sort of support group locally. Thanks for giving me a place to share. I could give TONS more details, but kids want Mom off the computer. Happy Summer!
LikeLike
Thank you Stephanie for taking the time to comment here. I certainly know how that feels being pulled by your family, but as you know those little ones are also the primary reason why we search for the best solution so we can be around for them to bug us more:) Perhaps that is why I haven’t got back to you sooner but is it because of your story and another powerful post (Christine) who’s story you can read below yours that we all must continue to fight for patient rights and get answers and find the best treatment options for PFO. Please provide more details here when you have a moment. In the meantime I hope you have found our PFO patient group on Facebook. You can link to it and join from the home page of PFO Research Foundation http://www.pforesearch.org
LikeLike
David,
I’m so glad to have found your site.
I recently suffered a stroke about 7 weeks ago. I spent an entire week with a stroke that had been misdiagnosed by four different doctors and one chiropractor during that week. I am only 43 yrs old and in top physical condition. I don’t drink, don’t smoke, have a great diet, exercise 6 days a week. Actually I was on my way out to the gym to an exercise class when suddenly, as if someone pulled blackout shades down to my chin, I lost much of my vision. Just like that. I felt a rush of panic, looked up and realized that all of this time, everyday I took my eyesight for granted. Now I had suddenly gone blind. I called to my partner for help who brought me upstairs to lay down. I slept, when I awoke what I was sure was twenty minutes had been 2 and a half hours. At the time I had no idea this time distortion was caused by the stroke.
I felt a sense of urgency and we got the kids in the car and rushed me to the local ER. I threw up on the way and lost consciousness due to a seizure, very briefly. At the ER the doctor told me I was suffering from an ongoing ocular migraine. My symptoms were that I could not see in my mid/upper left visual field, sharp head pains, vomiting, and everything looked as if it were underwater. I did not know where I was much of the time as my visual memory was affected, as well. I also presented with one pupil slightly larger than the other, and sharp pains in the head. My symptoms are/were mostly visual and memory; no physical imbalances whatsoever. The doctor sent me home with migraine medicine prescriptions, and told me to call the neurologist on Monday, as it was a Saturday that day. The neurologist turned out to be closed on monday. I am telling this whole story to remind people that not all stroke symptoms are the same. Looking young and healthy did not help me to gain a diagnoses early, sadly. That week I visited my primary care, who also missed the stroke and sent me home with migraine meds. I saw my chiropractor the next day, who told me it was a Stomach bug. By Thursday I had become completely exhausted from trying so hard to function normally. I was at the end of my rope. With my family’s help I got to the earliest neurologist appt I could. The neurologist and her assistant told me it was a migraine. I asked them if they had ever heard of a visual migraine to last a week, and they said no. I told them I have two small children ( 6 old twins) who I am the primary caregiver for, and I am unable to care for them through this. To my deep dismay, the intern told me it was a Migraine and that he will see me in a month. He gave me migraine medicine prescriptions and told me to make an MRI appt at the front desk for the next week or so. I asked him point blank “this feels like an urgent situation to me. Are you SURE I shouldn’t have an MRI sooner? There is something wrong in my brain, are you SURE this is safe?”. He smiled and told me “there is no urgency here. There are no lesions on your brain” I left knowing there was something wrong in my brain which had gone undiagnosed. I was in tears now; my partner told them we would not leave that office until we got an MRI that day, so they ordered one for late that night. I went in with the help of my mother, and found that the intern had ordered the wrong MRI. He ordered it for my eyes although I told him it repeatedly it was not my eyes, it was my brain. The MRI technician was impatient with me as I described to her my dilemma, and I finally told her to go ahead and do the scan as now I was powerless. She did the scan and they sent me home. At 9am the next day that neurologist called me to say that I needed to return immediately to the ER at her hospital, there was a lesion on my brain which looked to be a stroke. I was surprised they could see enough of my brain to see the lesion. I told her that I had two small children; my partner had to fight to get that MRI; I told her I will never see her again. I had my partner drive me to Mass General ER, where I BEGGED them to believe me, to please help me, not even for me but for my two small children who need me. I was shortly thereafter admitted to MGH for a stroke in my right temporal/occipital lobe. I spent a week there. While at MGH I was diagnosed with a PFO in my heart and now I am undergoing more tests on the heart, brain and blood to be sure that the correct cause of the stroke is found.
I am grateful for your website and I hope to learn more as I go along here with my healing process and my options for treatment. As you can well imagine, I am not trusting of doctors anymore; I understand they are very limited and I am learning to be a very very clear communicator and advocate for my self and family. I am cautiously approaching all treatment options, most importantly doing all that I can to avoid suffering another stroke. I truly hope that my story will save someone who may be having a stroke whose outer appearances do not present as a typical stroke candidate, whatever that is supposed to look like. Please advocate for all and take all possible symptoms seriously. The cost of an MRI is so very minimal in comparison to you or your loved one’s precious life. Take care of yourself and of each other, always.
If you are a health care provider, remember to set your ego aside and listen closely to your patients/clients. They are most likely feeling powerless and handing a great deal of power over into your hands. Take precious care to listen and use your knowledge wisely but with great respect for what you do not yet know. Always keep an open mind, and even more importantly, an open heart.
LikeLike
Thanks Christine for sharing your story. You have inspired me (along with Stephanie’s comments before your post) to feature your story, hopefully others will listen.
Here’s how: view my post
Be sure to connect with our patient group at http://www.pforesearch.org
Best,
David
know-stroke.org
LikeLike
I had a stroke 3 weeks ago. Only thing that happen was I could not speak properly. Worked until someone asked me a question and I answered with a number. I went to my Dr. and on my way to the ER and the very next day someone asked about the Ultrasound and there was my reason for being a PFO “survivor”. I’ve decided to have the PFO done at the end of this month. No one can say not to do it. I’ve had Migraines but nothing recent or really bad anymore. Is there anything I should worry about? This is such a hard topic and no real things out there. Thank you for this place to open up a blog.
LikeLike
I had a PFO closure Dec of 2010, after 2 years of multiple Neurologist looking at me funny to the point where I gave up. I suffered from TIA’s and the Dr’s didn’t realize that was my problem until a major one. I am just curious if anyone else still has mild TIA’s after surgery. I know I do, I’m only 85% better…but I’ll take that.
LikeLike
Hi everyone. I am happy to have stumbled onto this blog, and thanks David for creating it.
I guess I will start by saying that as far as I know, I had never had a TIA or stroke. But I have had many migraines since I was 14 that have started with that terrifying and annoying aura. Sometimes I get the headache to accompany it, but not always.
I am now 21 years old and in recent months have been seeing the aura about every two weeks or so. They used to only happen every few months. I went back to the neurologist who seemed concerned and sent me for a bubble study which showed evidence of a PFO.
Needless to say I am pretty scared. I have an appt next week with the neurologist to see where to go from here. I will see a cardiologist I’m sure.
I know you can all relate. I’m sorry to all of you who have had strokes. It’s scary to be a 21 year old thinking that the possibility of stroke is out there, you just never know if and when it will happen. It makes all of my previous dilemmas in life seem so unimportant compared to this…
But most of all, what makes me the most mad is all the doctors I has seen… Whether it be the pediatrician when I was a teenager, my previous doctor, and my neurologist for a year…. Never thought about a PFO causing it…. It makes me mad, I think this needs to be something do tors start paying more attention to.
For me, I’m not sure what will happen. I’m an obsessive worrier so this diagnosis is making me a wreck. I wish you all the best, and thanks for sharing your experiences
LikeLike
Thanks so much everyone for sharing your personal stories. I can relate so well. I am 43 years old and have two children, 20 and 12 years old. I have always been very interested in exercise and nutrition, everyone I know says I am the healthiest person they know! I don’t smoke, exercise every day, not overweight and never had any problems with my yearly bloodwork. I was under a lot of stress, working very hard to pay my daughters college tuition and taking care of my aging parents. My job is very physical and I do a lot of lifting. I saw a big change in my health last year, at that time I was running 7 miles every other day and weight training in between. It turns out I was hypothyroid (Hashimotos). I had severe symptoms, which eventually responded well to Levoxyl. My energy level never returned to normal, and seemed to be getting worse over the past month. I was also getting mild headaches two or three times a week. I started “retraining” by runnning and walking uphill to increase my endurance. Nothing was working. I could never seem to catch my breath. Also “breathy” when not exercising. I had been to the allergist (no asthma), endo said it had nothing to do with my thyroid and I was probably out of shape! Started up with a personal trainer again. On April 2nd I took a weight lifting class, doing a lot of reps of squats and lunges. Within a half hour of finishing the class, I had tunnel vision, everything went black and white, and I caught myself before falling to the floor. If felt almost electrical, like someone had pulled my plug! When I spoke, I was slurring. I was alone and in a hurry, so I just kept going and told my husband what happened. My legs felt like rubber. I had an emergency appt. with my endo., thinking it was my low blood pressure/thyroid. It took two days to get to the hospital. I continued to decline, to the point where I couldn’t lift my arms or walk unaided. I was in shock to find out that I had a stroke. (right front side) There was some other abnormalities on the MRI and CT scans…cerebral fluid behind my eyes (doctors ruled out needing a shunt) and some unusual cluster of veins in the back of my brain. They told me I have a PFO and they believe that is what may have caused the stroke. They mentioned PFO closure but didn’t elaborate and the cardio team signed off of me without follow up. I have weakness, balance issues and some numbness in my left hand and face. I am very noise sensitive right now, have trouble concentrating and still not comfortable driving. I have PT 2 to 3 times a week which is helping a lot. The hospital send me home on low dose aisprin and a statin and follow up with the nuerologist. I have an appointment with a different hospital (JFK, Edison, NJ) that has a nueroscience center and doctors that specialize in stroke. From all the research on the internet, I really feel like the PFO is the cause. My current nuerologist told me he is not 100 percent sure it was the PFO and they don’t usually close it until there is a second stroke!! This has been a life changing event. I realized that I was pushing myself way too hard and the important people and things in my life have really come into focus. I know I am going to recover from this but I am terrified of having another stroke. If weight lifting caused the problem with a blood clot entering through the PFO, how am I going to go back to my career or working out? I am not a sedentary person! I can’t imagine never being able too run again. If I am a good candidate for closure, how do I know it’s going to hold up for the next 40 years? Thanks for listening. If anyone knows of any good medical resources in NJ, let me know. I was told that Morristown Hospital in NJ is the place to go for Cardiology. Good luck and God Bless!
LikeLike