Surgery Update-PFO Closure

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Update to my story:


It has been a long and mostly frustrating several months since the ordeal I spelled out in this article. I thought about pulling down my story and taking it off the web after I finally was cleared to have heart surgery to correct my PFO on May 1st. After much consideration, I felt it it important to leave the information and build on it to help raise awareness for stroke eduction.

Thank You

I have had such great support over the last several months during my recovery. Again, I want to thank everyone for their well wishes and their understanding over these past several months. I admit-it took some time for me to realize it, but I now know just how important it was to STOP all my running around and follow doctors orders to heal, both physically and emotionally. This also turned out to be a blessing on many levels and I want to let everyone know the real stroke hero has been my wife for staying so strong for me and our family. Thank you Lisa with all my heart.

The results have been excellent and well worth the long wait for me…

For the first time in more than 9 months I have a clear head. The surgery that repaired the hole in my heart has also instantly stopped the daily migraines and headaches I had been experiencing for all these months prior to surgery.

How could this happen and why does it take so long to get treatment? I don’t think doctors have the answers yet on many levels -but it has me completely intrigued. Regardless, I feel great and ready to get moving to raise awareness.

Here’s what I’ve been doing

Watch my video

By the way…You proved to me there is a need

By posting my story on the web, my website received hundreds of “hits” after the first ezine issue where I discussed my stroke. When I looked at how folks landed on my site I noticed (now over 8,000 hits to date) had arrived at my site by Google and Yahoo searches alone for the terms PFO and migraine. That was amazing to me just how many people are out there searching for information on these topics- much in the same manner I had been months earlier. The other interesting response was the feedback I received and responses where individuals recalled their own stories with similar struggles getting a diagnosis and treatment plan. My conviction to stay focused on launching a stroke awareness campaign was reaffirmed after reading your stories. As mentioned, I am establishing a dedicated blog http://knowstroke.wordpress.com to this topic and I urge anyone who wrote to me to please post their experiences

(see Share Your Story on my blog) to build a forum for support.

 

 

If you choose to remain private I certainly understand your position, but please call me directly in confidence if you simply need to bend an ear. If you would like to speak to me personally about donations, fund raising ideas, or ways you could help raise awareness in your own neighborhood please call me directly at (401)632-0868

Please consider a donation to Tedy’s Team and the American Stroke Association here

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Comments

Brenda King says:

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

Marsha says:

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

Karen Schneider says:

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.

David says:

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

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