Sushi Posted June 4, 2019 Report Share Posted June 4, 2019 Hi everyone, I haven’t posted for a while but wanted to mine your great experience. Has anyone had their mitral valve repaired with a MitraClip rather than having open heart surgery? I have severe mitral valve regurgitation after a lifetime of mild. I thought I’d never have to have valve surgery! I am scheduled to receive the MitraClip in two weeks. The cardio-thoracic surgeon felt that, with dysautonomia, pretty severe OI and Ehlers-Danlos syndrome, this less invasive procedure would be better. It is done trans-catheter through the femoral vein, so no incisions, no heart lung machine and much shorter recovery. My question is whether it will help with the pretty severe OI and other dysautonomia symptoms I have? Who knows...more blood flowing in the right direction seems like it could help a lot of things. So if anyone has had this procedure, I’d love to hear your experiences. Thanks! Quote Link to comment Share on other sites More sharing options...
Pistol Posted June 5, 2019 Report Share Posted June 5, 2019 @Sushi - I have not had this surgery but I know that MVP can be associated with OI, therefore I think it is reasonable to be hopeful for symptom improvement after the procedure. It sounds like you are in good hands with your surgeon, it appears he is mindful of your dysautonomia. I had a heart cath done ( which is a similar procedure as in threading a catheter through the vessels into the heart ) and despite severe POTS I tolerated the procedure very well. Best of luck - I hope the procedure goes well and I hope it will bring you relief of your dysautonomia symptoms. Please keep us posted!!!! Quote Link to comment Share on other sites More sharing options...
Sushi Posted June 5, 2019 Author Report Share Posted June 5, 2019 5 hours ago, Pistol said: @Sushi - I have not had this surgery but I know that MVP can be associated with OI, therefore I think it is reasonable to be hopeful for symptom improvement after the procedure. It sounds like you are in good hands with your surgeon, it appears he is mindful of your dysautonomia. I had a heart cath done ( which is a similar procedure as in threading a catheter through the vessels into the heart ) and despite severe POTS I tolerated the procedure very well. Best of luck - I hope the procedure goes well and I hope it will bring you relief of your dysautonomia symptoms. Please keep us posted!!!! Thanks. Yes I had to have a heart cath as part of screening for this procedure. It went well except for the difficulty getting the catheters in due to my tiny, deep veins. At least I’ll be under anesthesia for this in the coming procedure. The most difficult part of this procedure for the patient is the six hours lying flat on your back without moving in recovery. But I am hopeful for the outcome and even if I don’t get symptom reduction it is necessary to prevent damage to the heart. Quote Link to comment Share on other sites More sharing options...
Scout Posted June 8, 2019 Report Share Posted June 8, 2019 Hi there Sushi, I have MVP, but it is only mild at this stage, so no valve repair as of yet. I apologise that I don't have much to add to this discussion, but just wanted to wish you well! I'm sure the cath surgery will be the best way to go, especially if recommended by your specialist. If you don't mind me asking, how quickly did your MVP progress from mild to severe? Lots of well wishes your way. Quote Link to comment Share on other sites More sharing options...
Sushi Posted June 8, 2019 Author Report Share Posted June 8, 2019 Hi Scout, Thanks for the good wishes. I am not really sure how long it took to progress from mild to severe. It was first documented over 30 years ago though I probably had it from birth. I had echocardiograms every couple of years for a long time and it was always mild. Then I had one a out 4 years ago that was mild to moderate. The cardio wasn’t concerned and didn’t watch it with yearly echocardiograms. Then it seems to have triggered Afib (at least that is what my EP thinks). She did an echo in January followed by a transesophogeal echo for a better look, and it showed as severe or moderate to severe depending on what cardio read it. After that I was referred to get it repaired. Quote Link to comment Share on other sites More sharing options...
Sushi Posted July 17, 2019 Author Report Share Posted July 17, 2019 On 6/5/2019 at 5:20 AM, Pistol said: - I have not had this surgery but I know that MVP can be associated with OI, therefore I think it is reasonable to be hopeful for symptom improvement after the procedure. I had my mitral valve repaired with a MitraClip on June 19th followed by a night in a cardiac step down unit. I tolerated the procedure well though recovery has taken a while—as I expected. I had a followup appointment today and another echocardiogram—the MitraClip is still perfectly placed and the level of regurgitation has remained as “trace” since the procedure. But importantly, my OI has improved tremendously—no more pre-syncope every time I stand up. I am even able to do a tiny bit of yoga. Take away: if you have any level of mitral regurgitation, make sure that your doctor is watching it with regular echocardiograms. Also, for me, severe regurgitation was definitely associated with orthostatic hypotension. I am so happy to be functioning better! 🙂 Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 17, 2019 Report Share Posted July 17, 2019 GREAT NEWS @Sushi! nd thank you for the update, I am sure this will be of interest to a lot of other people suffering from MVP. I hope your improvement is permanent and your recovery fast!!!! Quote Link to comment Share on other sites More sharing options...
Scout Posted July 18, 2019 Report Share Posted July 18, 2019 @Sushi I am so pleased to hear you're doing well! That is such good news! Sending lots of well wishes for your healing! Keep us posted 😊 Quote Link to comment Share on other sites More sharing options...
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