Comments on: Share Your Story

By: Samantha

Samantha — Wed, 30 Nov 2011 16:35:07 +0000

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.

By: Pamela

Pamela — Sun, 11 Sep 2011 00:29:56 +0000

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.

By: David Dansereau

David Dansereau — Mon, 15 Aug 2011 20:13:39 +0000

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

By: David Dansereau

David Dansereau — Mon, 15 Aug 2011 13:20:19 +0000

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

By: Christine

Christine — Mon, 15 Aug 2011 02:45:24 +0000

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.

By: Stephanie

Stephanie — Sat, 06 Aug 2011 16:56:22 +0000

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!

By: Russell Michael

Russell Michael — Thu, 23 Jun 2011 17:32:28 +0000

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.

By: Paul

Paul — Mon, 14 Mar 2011 17:14:00 +0000

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

By: Cindy Miller

Cindy Miller — Wed, 26 Jan 2011 02:41:32 +0000

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.

By: Paul

Paul — Wed, 01 Dec 2010 13:29:53 +0000

David, thanks for the response and one of these days I hope to thank Tedy personally. Paul