Hello everyone! I’m beyond frustrated and I have no idea what to do. Here’s my story…
Sept 2015, I had a stroke in my left eye. MRI was clear. Retinal vein occlusion was visualized my neuro- ophthalmologist. Went to a retina specialist to check retinal circulation. Ended up seeing 4 different doctors and had numerous tests. It was awful. After all that, no answer was found, so I was monitored for additional loss.
March 2017, I had another stroke, this time in my right eye. Had a MRI, MRA, and CT scan. Doctors were confused. Neuro ophthalmologist sent me to a hematologist. In the mean time, I went to another neuro ophthalmologist for a second opinion. He said that I definitely had strokes in both eyes. The damage is not reversible. The hematologist ran all kinds of blood work, all of them came back completely normal. Next stop was the cardiologist because I mentioned that I was having palpitations. The cardiologist did a full work up. He ordered a bubble study because of the strokes. The bubble study was positive. His report also states that I have mild regurgitation of the mitral and tricuspid valves, right-to-left shunting, and mild left ventricular hypertrophy. He started me on a regular aspirin and sent me to Houston to see a specialist for PFO closure. The doctor in Houston ordered a TEE. The TEE was positive for a hole. So he ordered heart catheter closure with an Amplatzer device. They went in and he said he couldn’t find the hole! How can he see the hole on Monday and Thursday he can’t? He came in after the procedure and suggested I see a neurologist, to which I responded no.
I’m so tired.
I’ve tried to Google situations like this but it’s like looking for a needle in a haystack. I’ve scheduled an appt with the original cardiologist to go over his report.
Has anyone else had this happen? Any suggestions as to how to move forward? If you got through all of that, thanks!
Hi Manciebeck
Welcome to the ASD forum. What happened to you is certainly very frustrating, and going back to the original cardiologist sounds like a good plan. See what he has to say, but one of my questions would be whether he has ever encountered this kind of thing before. It will be interesting to see what he suggests as a next step.
Have you considered getting a second opinion from another cardiologist?
Yours is a very interesting story, and I hope that you will get some responses.
Seenie from Moderator Support
@Mancieb Sad but true LOTS of people have had happen. ASD diagnoses from Echo (or TEE which is just a fancier more expensive Echo) are incorrect as much as 29% of the time (false positives). It becomes less dependable when there is some valve regurgitation (usually a normal condition) and or especially any degree of ventricular hypertrophy The only real way to know for sure is in the cath lab which is where you wound up. Thank goodness it wasn’t ASD
Now that may seem like a high number, but because it doesn’t apply to false negatives it makes it a pretty reliable screening test.
The neurologist seems like a good call. I would also have a good long discussion with your cardiologist about possible anti-coagulation treatment and Beta blockers. The palpitation COULD be atrial fibrillation (hard to catch) which often causes “eye stroke” I assume they have studied your carotid artery or neck artery, but they should if they haven’t.
Mancie, On reading your story, this is a learning for me that a hole might appear in a test and then not be there in the cath lab. I shudder to think what it would be like for a patient to undergo OHS only to be told “Hi XXX (patient name) our tests showed a hole and we cut your chest open to perform OHS on it. After subjecting your body to the procedure we discovered there is no hole to be fixed so we just stitched you back up. So the good news is that you dont have ASD but the bad news is you still gotta deal with this aborted surgery. We wish you a happy life!” OMG. I dont know how I would react if I was in your place.
I do not know of others who were in the same predicament like you so cant say much. But what the moderators say here sound like good advise to me and I would second that.
Wondering what year this was posted. I had a TEE too, after other tests. Cardiologist said hole was “big.” I’m 71 and lived most of my life without problems until about two years ago when oxygen levels were getting low. Went to a Lung Specialist, but eventually cardiologist said my issue was the ASD. The surgeon who placed the Amplatzer on 8/27/17 said the hole was “littlier than expected.” Am now fighting with doctors about taking Plavix to avoid a stroke, but it makes me very ill … need another alternative and I find I still need to use oxygen (given by the Lung Specialist). Only four days out, I’m hoping things improve! Sorry to hear about your eyes. My hubby gets monthly shots in the eye for Wet Macular Degeneration … grateful it’s helping. Best of luck!