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I have had mild mitral valve regurgitation for many years--I was probably born with it. Mild regurgitation is common--and particularly in the Ehlers-Danlos sub-set of patients as valves involve collagen. It usually does not progress and does not require treatment. But, sometimes it does and I recently had an echocardiogram that showed that mine had progressed to severe. My orthostatic intolerance had also slowly progressed though it wasn't clear if they were related. Most cardiologists feel that severe regurgitation requires treatment and until recently that meant open heart surgery to repair the valve.
My cardiologist referred me to one of the best valve surgeons in the country, but his recommendation was to fix the valve by accessing the heart through the femoral vein rather than open heart surgery. Part of his reasoning was that I had ME/CFS, dysautonomia and EDS and that the usual 3 month recovery from open heart surgery would likely be much longer....and possibly could lead to an overall reduction in functionality rather than a boost. The other aspect was that, though repairing the heart through the femoral vein is a relatively new approach, it has so far been extremely successful. (Mick Jagger recently had his aortic valve replaced through this technique.)
The interventional cardiologist who performed this surgical procedure on me had never operated on an ME/CFS patient with very significant OI and had no idea what effect it would have on that symptom...but the other reasons for going ahead were compelling as untreated severe regurgitation most often will lead to significant heart damage.
Before this procedure, I could only stand up for about 30 seconds and could not walk across the room. I also had marked shortness of breath. I had 5 star doctors and a 5 star hospital and everything went smoothly, though the procedure required a general anesthetic, intubation and a short in-patient stay in a monitored cardiac step-down unit.
I have waited to post about this as I knew that recovery from such an event would not be quick. It has now been nearly two months and, for me, the change is remarkable. While I still have OI if I overdo it or stand up for long periods, functionally it has been night to day. I suspect that my mitral valve regurgitation had slowly been increasing and that this had been exacerbating my OI. No more shortness of breath! I have recently begun physical therapy as the many months spent mostly bed-bound took its toll. I have also gone back to a pilates class and so far so good.
I know that not many will be in a similar position, but for any who might be, I wanted to bring this up. I am very thankful for having had this procedure.
My cardiologist referred me to one of the best valve surgeons in the country, but his recommendation was to fix the valve by accessing the heart through the femoral vein rather than open heart surgery. Part of his reasoning was that I had ME/CFS, dysautonomia and EDS and that the usual 3 month recovery from open heart surgery would likely be much longer....and possibly could lead to an overall reduction in functionality rather than a boost. The other aspect was that, though repairing the heart through the femoral vein is a relatively new approach, it has so far been extremely successful. (Mick Jagger recently had his aortic valve replaced through this technique.)
The interventional cardiologist who performed this surgical procedure on me had never operated on an ME/CFS patient with very significant OI and had no idea what effect it would have on that symptom...but the other reasons for going ahead were compelling as untreated severe regurgitation most often will lead to significant heart damage.
Before this procedure, I could only stand up for about 30 seconds and could not walk across the room. I also had marked shortness of breath. I had 5 star doctors and a 5 star hospital and everything went smoothly, though the procedure required a general anesthetic, intubation and a short in-patient stay in a monitored cardiac step-down unit.
I have waited to post about this as I knew that recovery from such an event would not be quick. It has now been nearly two months and, for me, the change is remarkable. While I still have OI if I overdo it or stand up for long periods, functionally it has been night to day. I suspect that my mitral valve regurgitation had slowly been increasing and that this had been exacerbating my OI. No more shortness of breath! I have recently begun physical therapy as the many months spent mostly bed-bound took its toll. I have also gone back to a pilates class and so far so good.
I know that not many will be in a similar position, but for any who might be, I wanted to bring this up. I am very thankful for having had this procedure.
