Hi everyone! My name is Katherine. I'm 33 years old and live in Sacramento, CA. Last spring I had a 15mm PFO closed (in March 2014) with the transcatheter procedure using the Gore Helex 25mm device. I'm looking to hear others experiences after PFO closure because I am having post surgical complications that did not occur prior to surgery that are very distressing and I'm curious how common this is?
Prior to surgery I got extremely short of breath and tachycardia during exercise/exertion only, never during rest. Post surgery I have constant shortness of breath even at rest, intermittent chest pressure/pain like a chicken bone stuck (never occurred before surgery) and almost daily migraine auras that blind me for approx. 20 mins when they happen with no pain just visual disturbances (never had visual auras before surgery). All these symptoms started 2 days after the surgery and has been consistent every day for 11 months straight thus far. It's been awful and I'm at my wits end dealing with this. I'm curious if anyone else has had a similar experience of feeling like crap with weird symptoms directly after having their PFO closed via transcatheter surgery using a device?
I've seen my interventional cardiologist who did my surgery along with a second cardiologist for a second opinion and both have no answers as to why I'm having symptoms. Echos show nothing, bubble studies show nothing. Neither has sent me for a TEE since surgery 11 months so I don't know if that would yield answers. Both say they've never seen my constant shortness of breath, chest pains and migraine auras after device placement. I've seen a great pulmonologist who has sent me for every pulmonology test under the sun to rule out lung issues and it shows my lungs are structurally clear and working great, that my oxygen saturation is great and I should not feel short of breath, and yet I do. All my docs are stumped.
I've done tons of research online about complications after PFO device closure and found some interesting stuff. Currently I'm pushing to be evaluated to see if my previously known nickel allergy is to blame. I cannot wear cheap earrings because they make my ears itch, swell, burn, hurt, etc. and cheap non-gold rings leave sores on my fingers. I get bad inflammation from cheap nickel jewelry. There's a lot of research out there talking about the complications of nickel allergy presentations after PFO closure with a percutaneous transcatheter device because most are made with Nitinol (55% Nickel and 45% Titanium mixture) which include chest pains/"chicken bone feeling", constant shortness of breath/dyspnea, migraines with auras that never occurred before surgery, along with a host of other problems. Seems to fit my situation but because I have the Gore Helex device my cardiologist is adamant he's never heard of it being an issue with that specific device since it has some kind of Teflon coating on the metal on the device to hide the metal from my immune system so there should be no allergic reaction.
All I know is It's been 11 months since the PFO surgery and I am not getting better -- I'm still having constant shortness of breath, still have constant chest pressure/pains, still have daily migraine auras. I'm at the point where enough is enough. I'm trying to stay patient between doctor appointments but I feel like I just want to yell at my doctors to hurry up and figure it out! I was told I was supposed to feel better after surgery, but that didn't happen for me. I actually feel worse.
If you've had post surgical complications after your PFO device placement, please tell me your experience. I feel alone in this because everything I've read in patient forums is about how great people feel afterwards, and it would really help to know I'm not alone. Thanks for reading!