Comments for Know-Stroke.org

Comment 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.

Comment on PFO, patient identification cards and fish tanks? by Beth

Beth — Tue, 11 Oct 2011 21:28:12 +0000

I read Bray’s post a while ago in the group on Facebook, and made a *mental note* to immediately schedule an appt. with my cardiologist who preformed my surgery for an over due follow up visit. The metal note to myself failed, as I’ve been dealing with other health issues. Now I have my written note reminder as I shall be in his office tomorrow for an appt. with my electrophysiologist & neurologist in the same office. Glad I found your blog as a reminder, and looking forward to reading your past posts.

Comment on Share Your Story/Contact Me by Julie L.

Julie L. — Thu, 06 Oct 2011 21:45:53 +0000

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/

Comment on Share Your Story/Contact Me by CindyW

CindyW — Thu, 06 Oct 2011 14:41:58 +0000

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.

Comment on Share Your Story/Contact Me by Kristy B

Kristy B — Sun, 02 Oct 2011 07:04:05 +0000

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

Comment on PFO, patient identification cards and fish tanks? by Marcia

Marcia — Wed, 21 Sep 2011 20:10:26 +0000

David!!!!!! OMG!!!!!!! Keep us all posted! xo you!

Comment on Share Your Story 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.

Comment on Share Your Story 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

Comment on Share Your Story 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

Comment on Share Your Story 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.