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Young Stroke Survivor
I am 33, and had a stroke in May at the age of 32. So far everything is ruled out, except PFO. I had 2 TEE attempts, and going to Strong Memorial Friday for another go. Has anyone had a PFO closure? Did it help you do things you couldn't do before? What were some things the closure improved?
AHAASAKatie, December 20, 2018 9:11am EST
Good morning, I can share the information we have on the correlation between a PFO and Stroke if that helps at all. How are you doing with the recovery? Is there anything we can help you with or do to be supportive? Thanks Katie
AmbassadorDN, December 20, 2018 10:21am EST
Welcome to the Support Network!
Katie has given you a great resource. I have not had a PFO closure myself since my stroke was at birth and was related to a heart valve defect. However, I wish you a successful TEE test. I've had a few TEEs, so let me know if you have any questions or concerns.
To Heart and Soul Health,
Ambassador DN (Debra)
Swtangel25, December 20, 2018 9:31pm EST
Thank you for the support! I have my third TEE tomorrow morning. I'm actually hoping they do see a PFO. Then I'd have an answer, something I can do about it. I am quite aware now how a PFO can cause a stroke, but that seems to be ALL there is online. I was diagnosed with MVP a few years back, exercise-induced asthma in my teens, but that didn't seem right to me. I felt like my heart rate jumped before my breathing... But exercise makes me black out if I'm not careful, so I don't do much more than walk, and not much of that. I am pretty sure I have Raynaud's as well, my doc agreed it was possible, and never discussed it again. I feel like a PFO would answer so many questions. Then the question becomes, are those other diagnosis incorrect, or related?
As far as my recovery, I am doing much better. I still have some nerve pain in my right arm, not like before, though. Rain used to hurt. After the stroke, I tried a lot of sensory re-education techniques, if I used cold water, I'd tell myself, "it's not pain, it's cold". Over and over. My typing took a hit, I have to proofread a lot more. I've edited this about 12 times already. And my husband says I still use incorrect but related words sometimes, but no one seems to have noticed, and I don't know that I believe him. Lol. But I got very lucky. I don't know that I can be that lucky again.
Swtangel25, December 21, 2018 10:49am EST
So.... no PFO.... my heart looks perfectly healthy..... but then why did this happen? Where do I go from here? I feel so lost.... if everything is ruled out, including PFO, what happened?
AmbassadorDN, December 29, 2018 1:29pm EST
My apologies for the late comments here (Christmas crazies with the family!). I really hope you enjoyed the holiday despite feeling disheartened at the results. I admire your tenacity, though!
Since a PFO was ruled out, and you mentioned that you have exercise-induced asthma as well as MVP, have you met with a pulmonary hypertension specialist? I don’t know how much you know about PH, but if you are having these issues with blacking our during exercise, I’d advise you to see a pulmonologist who specializes in PH. There aren’t many—they are few and far between much like congenital heart defect cardiologists—but here is a resource to get you started. https://phassociation.org/
I actually sought one out in Los Angeles (I live in So. Cal), and he thoroughly tested me. Turned out my symptoms were because of secondary PH due to my defective heart valve.
Also, and I’m sorry if I didn’t see if you mentioned this, but if you have a neurologist, speak with that doctor to try to see what’s going on, even though it is clear you did have a stroke. Perhaps your neuro can help pinpoint the cause(s). Although I’ve had a weak right side my entire life, I didn’t know I’d actually had a stroke until I was 41 when I had an MRI following a TIA after my second heart valve surgery. My doctors and parents just believed that I was hypoxic during birth because of the heart attack; we had no idea that the clot from the heart attack caused a stroke!
I wish you the best, and feel free to vent and ask questions, and of course, keep us posted!
To Heart and Soul Health,
mschief, May 7, 2019 12:17pm EST
I too had a cryptogenic stroke at 39. I still suffer from little things that most people don't notice but I find it very frustrating.