Comments on: Surgery Update-PFO Closure http://knowstrokeblog.my-physical-therapy-coach.com/2007/05/26/surgery-update-pfo-closure/ A stroke/PFO (Patent Foramen Ovale) awareness blog by David Dansereau dedicated to removing the "gray areas" and understanding the connection between the heart and the brain Wed, 30 Nov 2011 16:35:07 +0000 hourly 1 http://wordpress.com/ By: Edna http://knowstrokeblog.my-physical-therapy-coach.com/2007/05/26/surgery-update-pfo-closure/#comment-1401 Thu, 10 Mar 2011 06:51:27 +0000 http://knowstroke.wordpress.com/?p=8#comment-1401 David,
I just read you post. I feel so good that there was a good end to your story. I hope mine will be the same way. I am sooo afraid of what the cardiologist will do to me because I have never been to the hospital but to have my children. I am so worried, but knowing about your story and how it ends make me feel fine. I am glad you wrote what you wrote about your story and the explanation of PFO. Thank you sooo much.

]]> By: David http://knowstrokeblog.my-physical-therapy-coach.com/2007/05/26/surgery-update-pfo-closure/#comment-382 Sat, 24 Apr 2010 00:11:44 +0000 http://knowstroke.wordpress.com/?p=8#comment-382 Get as much info as you have available and present your case. Also, get more than one opinion so you know all your options, then keep trying.
Here’s a link to the PFO Research Foundation, a newly formed patient resource I am involved with to help improve patient care. The PFO Research Foundation (PRF) was formed by patients for patients and is supported by leading experts in the field of PFO medicine.
I know it can be a huge frustration but I ruled in for 2 strokes and I was finally approved for closure after doing just what I advise here. Keep trying and fighting. You may also be helped by sharing your story on the facebook link to our PFO Research Foundation Group

]]> By: Karen Schneider http://knowstrokeblog.my-physical-therapy-coach.com/2007/05/26/surgery-update-pfo-closure/#comment-354 Thu, 15 Apr 2010 01:35:07 +0000 http://knowstroke.wordpress.com/?p=8#comment-354 My husband had his second stroke 12/28/09. He had no known pre-existing conditions which would predispose him. Neurologist performed a doplar study and a PFO was discovered. It is large, 7-9 mm. Neurologist encouraged him to enter into a research study for the effectiveness of Amplatzer closure device. Evidently FDA has only approved this device for “humanitarian” i.e. research use. We found out this a.m. that he will not be in the part of the study receiving the device. He will be in the control group and be on med only, Agrennox. The more online research we do the more we see the need to close the PFO. Dave, how did you get the device for your PFO outside of a research study? If the FDA has not approved it for stroke cases, insurance will not pay. To add to the stress, as far as we know open heart surgery is the only other alternative and not a good risk for anyone with prior strokes.

]]> By: Marsha http://knowstrokeblog.my-physical-therapy-coach.com/2007/05/26/surgery-update-pfo-closure/#comment-164 Thu, 11 Jun 2009 13:38:38 +0000 http://knowstroke.wordpress.com/?p=8#comment-164 Dear Dave,
On May 1, 2009, I had what was called a TIA or mini stroke and was hospitalized for 4 days with test after test done for those 4 day that came back with the doctor saying we dont know what happened and cant find the cause of it. I was release very fastrated into the care of a neurologist that beleive I was only experiencing seizers but will send me to a cardiologist anyway because it is recommended.

At my cardiology work up he found a few things that to him did not look right like the fact that my lower extremities would turn blue if I sit for more than two mins and I told him I noticed it after I was released from the hospital and I was inceasininly out of breath doing things around the house that never happend before so off he sent me to do a TEE only to find a PFO in my heart on May 27, 2009. I did not think twice to get the surgery to get it fixed because I want my life back. I cant play with my kids that way I use to. I have so many headaches it is not funny, I am on so many meds until the surgery that I feel like I own the local CVS.

Thank God my surgery date is on June 18, 2009. I am so inspired by your story that I wish it was today.

Marsha
Miami FL

]]> By: Brenda King http://knowstrokeblog.my-physical-therapy-coach.com/2007/05/26/surgery-update-pfo-closure/#comment-138 Wed, 15 Apr 2009 20:37:20 +0000 http://knowstroke.wordpress.com/?p=8#comment-138 Dear Dave:

I’m 52, in good health, and nearly 7 months ago I had a small stroke. Because there were no other risk factors, doctors ultimately did a TEE and found the PFO. I also have had migraines with aura since high school. And I’m always tired. I’ve read so much on the internet that my head is spinning. Doctors won’t recommend which treatment I should have–they tell me the options are medicine or PFO closure and that I need to decide. Here’s what I also don’t understand–the FDA hasn’t approved the PFO closure device for use unless you have a second stroke. First of all, I don’t want to chance a second stroke that may be much worse! Also, if it’s not FDA approved, does insurance cover the procedure? My neurologist advises against having PFO closure outside of a clinical study because it has not been determined that is the best treatment. Then I have a cardiologist saying, yes, we can close it… I’m very confused and unsure what to do. Can you give me any insight into my frustrations? How did you decide that PFO closure was best for you?

Thank you so much.
Brenda

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