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Any EDS hypermobile types that have had ablation?
I now have permanent and persistent atrial flutter. I’m on very high doses of flecainide (150mg BID and diltiazem ER 120 mg BID, plus Eloquis. I cannot tolerate metoprolol.)
I’m also a hypermobile Ehlers Danlos patient, female, 71 years old. Vascular EDS has been ruled out by genetic testing.
Over the last four years, my PVCs have increased, then one or two incidents of atrial flutter per year, controlled with meds and ER conversions. Until this last December when the atrial flutter did not stop for two weeks and any attempts by ER to convert failed.
My cardiologist/electrophysiologist has me scheduled for flutter ablation. Normally this is an out-patient procedure, but everything I’ve been reading about EDS hypermobile and ablation makes it extremely risky.
I’m petrified of a bad outcome on the table, but my local hospital is run by hospitalists who determine who is admitted for observation and who is not. Add to it that the doctor who will actually do the procedure thinks that he knows what EDS is “oh yes… you’re flexible!” and I am petrified.
Something has to be done because I cannot drive on the meds they’ve increased me to, plus the blood thinner makes me dizzy and woozy. I’m pretty much stuck on the couch. When I try to get up to do normal chores my heart races and pounds.
We are very limited on cardiology care in our small towns, and although I trust my referring cardio, no one seems overly concerned about the EDS involvement.
Is there anyone here who has EDS hypermobile type that has any experience with an ablation or do you know a cardiologist that I could perhaps pay for a telephone consultation? I’ve not found any on the EDS National Foundation referral website.
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I hope you get answers from knowledgeable patients. I cannot help, but I have read your post and can see that you need help. Good luck!
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1 ReactionThank you. I know it’s a long shot but I’m hoping there’s someone here that can make a recommendation or has a personal experience. Appreciate your good wishes.
Not exactly what you are asking, but I have hEDS, mid 60’s and had a pacemaker implanted recently. As I expected, my healing is delayed. So far it seems my leads are staying implanted. Not sure but it seems my pacemaker itself may have shifted a bit. My shoulder on that side subluxed during surgery and didn’t go back in place for 2 weeks. I’m having more shoulder pain from that- not sure if I’ll need treatment for it or not. My shoulder pops now with movement. I’m still on restriction from lifting that arm up for a few more days so can’t begin any home therapy yet. I did discuss my hEDS with the EP. I do have an EDS knowledgeable cardiologist here in Phoenix. Would that help you?
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3 ReactionsYour reply is very helpful. I’m trying to get my EP to acknowledge that my healing won’t go according to most ablations he performs, and what to be watchful for. I’m also concerned about my pelvis and cervical spine during the procedure. These are my two big unstable points; also a shoulder and knees. If your doctor could be open to chatting with me or communicating with my EP, I’d be relieved. Thank you for your thoughtful reply. I hope you continue to heal and that the pacemaker stays in place.
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1 ReactionI am cautious about giving out too much info on personal info on a public site. If you want to message me I can send my cardio’s name ( he is not on staff ant Mayo) and my Mayo EP’s name. My cardio is really booked out but he might be able to do a video visit? I have trouble getting in to see him. I did see a young resident at Mayo that seemed to know EDS, I can share his name too. But I have no regular cardio at Mayo as they were too overextended to assign one.
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1 ReactionI have Hypermobil EDS and Osteogenesis Imperfecta as well as a congenital heart defect. I had 2 ablations and both had delayed healing one, also dislocated both shoulders and caused a minor heart attack so definitely be cautious.
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2 ReactionsIf your in MN there are several cardiologists that are extremely knowledgeable about Connective tissue disorders.
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1 ReactionI understand about personal info. Thinking a video visit might work if your cardio was willing. I’ll try messaging you (haven’t used that feature here yet). Thank you.
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1 ReactionNope. I’m in a small town in Oregon.
I’m so sorry. What a trial. I did have recent genetic testing that ruled out vEDS and 96 other connective tissue disorders. I can’t imagine having to deal with more.