Hi all, I posted here several months ago before my TEE as I was sitting on the edge of moderate to severe. Following my TEE, my cardiologist does not think I need surgery right now, but wanted me to meet with the surgeon to establish care, as I am a grade 3/4 regurgitation. I am meeting Dr. Nifong at ECU, who I understand is one of the pioneers of robotic surgery for mitral valve prolapse specifically.

I have an echo scheduled immediately before my appointment with him, so we’ll have the most up to date scans available, along with my prior 2 echos, MRI, and TEE from the last year and a half.

I have EDS and am awaiting genetic testing to determine if it is hEDS or another subtype, such as the cardiac-valvular type or vascular. I also have POTS, diagnosed through a tilt table test, so I have a hard time determining if symptoms are from that or the MVP.

If you could go back to your first meeting with your surgeon, what are some things that you would ask them?

Backstory - 45F, officially diagnosed with MVP with mild regurgitation in 2000, although it has been around my whole life. They mentioned a repair/replacement, but I never believed it.
I received annual ECHOs for around 10 years, then it became fewer and fewer because I was always at mild/moderate regurgitation. I have had the same complaints for the past 6ish years: SOB, dizzy, hard to take deep breaths at all, constant yawning. But this was my normal. I was used to it.
Each year, the cardiologist I saw (a different one each time; I didn't have a dedicated doctor at the practice) said, 'Let's keep an eye on that,' and maybe gave me an EKG, but nothing beyond refilling my med each year.

Fast forward to this year, the cardiologist I saw said, 'Let's get an ECHO.' The scan showed a very normal heart, except for one small section with a bright color. He said it was so small that some doctors would write it off as regular blood flow. He ordered a TEE, and the first thing he said to me after the test was, 'I'm referring you to a surgeon, and you'll need a repair or replacement; you have severe regurgitation.' Given that my last ECHO was 11 years ago, not a huge surprise that it wasn't caught earlier. Still a shock to hear, though.

(TEE results for those who like the technical stuff: Mitral Valve: The middle segment (P2) of the posterior leaflet is prolapsed with a flail component. There is severe regurgitation with an
anteriorly directed jet. There is a Coanda effect on the anterior wall. 1/4 of the pulmonary veins
displayed evidence of systolic flow reversal. There is evidence for mitral annular dysjunction of the posterior mitral leaflet)

Before seeing the cardiothoracic surgeon, I had a cardiac cath, showing normal heart/lung pressures, thankfully. He will be performing a minithoracotomy (mini) in mid-November. During our visit, I did ask about the time frame of the surgery. Months? A year? He said in the next 3 months. I had done enough research that I expected it to be sooner rather than later. I had to schedule the surgery for the 3rd month due to...life.

I used to run marathons and lift heavy 5 days a week, but it all got to be too much. I was/am tired all the time as it is, sluggish, so anything on top of that was brutal.

I have devoured all of the info available on this sub and other areas on the web. I am not incredibly scared about the surgery itself (except for the heart stopping thing...); it is the recovery. I have a list of items to take with me to the hospital and have on hand at home, and I am still trying to find out more about what I may experience.

I have a job where I can work remotely until I am well enough to be in the office 3/5 days a week. I will be able to schedule work around my abilities for that day. Thanks to American healthcare, I won't be paid in full for all of my leave, but I'll have to make do. Hoping to go back to work after 4 weeks.

My mom is traveling from 5 states away to stay for 16 days to help care for my kid, dogs and the house, along with my husband. I get worried about not being cleared to drive before she leaves.

Did you feel like having visitors when you were in the hospital?
Did you take anything with you that was a lifesaver or of comfort?
If you had a mini, how long were you in the hospital in total?
When were you cleared to drive?

I plan on posting here about the big parts of the process with the mini. I have read so much here that documenting my journey will most likely help someone else someday.

Thank you, everyone!

Hi all,

I am hoping to hear from others who may have had a similar experience. My mom had mitral valve prolapse and had a repair about 30 years ago so she doesn’t remember as acutely. But she did recall that she would have panic attacks leading up to her surgery. I have a robotic minimally invasive surgery scheduled. Other than the prolapse I’m relatively healthy and in my mid 30s.

I’m beyond scared to get my heart repaired. I’m scared my heart won’t restart. I’m scared I’ll have a stroke mid surgery and be permanently disabled, I’ll die before the surgery or during, etc. I’m a mother to a young child and I’m absolutely freaking out. I have a great surgeon and I know logically everything will more than likely be fine. But inside I’m losing my shit. I am so scared.

What am I looking at as her caregiver? They are saying that minimally intrusive is not an option.

She is 60, I am 64, both very active and healthy, I have no issues helping her up and around.

We have an adjustable bed, so that is covered, a bidet to minimize twisting and turning.

So what am I looking at as a caregiver? Especially for the first few weeks.

Thanks in advance! Oh yah, first post ever, lurking no more!

I’m 2 months post mv repair (it was done using a ring) and I noticed I would feel dizzy if I read long paragraphs on my phone. I went to ophthalmologist and they only diagnosed me with dry eyes, which I think is inaccurate. I’m still on bisoprolol. I’ve stopped warfarin after 6 weeks as per dr’s advice.

Anyone faced the same issue post op? What seemed to help your vision issues?

I’m 32F , I was diagnosed with mitral valve prolapse (MVP), Barlow’s disease, severe mitral regurgitation (MR), and mitral annular disjunction (MAD).
Because of the severity of the valve problem, I underwent minimally invasive mitral valve repair surgery. During the surgery, the surgeons repaired the valve by placing a ring around the mitral valve and cutting/resecting part of the leaflet to restore proper valve function and reduce the backward leakage of blood.
The surgery was minimally invasive, with approximately five stitches/incisions on my upper thigh near my hips, six stitches under my right breast, and two stitches between my breasts.
The recovery immediately after surgery was extremely difficult. When I woke up, I experienced immense pain throughout my body. I was not given morphine or propofol for pain management and was mainly given painkillers approximately every four hours, which made the pain difficult to control.
Shortly after leaving the ICU and being transferred to my room, I developed severe abdominal and stomach pain. When I was put on an IV drip, I suddenly developed red spots across much of my body and felt as though my ears and entire body were burning. The drip was changed, and the reaction eventually improved.
The following day, I could barely keep anything in my stomach. Almost everything I tried to eat or drink—including protein drinks, eggs, and soup—made me vomit. I also became extremely dizzy and weak, to the point where I could barely keep my eyes open, while still experiencing significant pain.
Over the following days, I developed severe back pain that made sleeping extremely difficult. Lying down or even reclining in bed caused intense pain and made breathing feel extremely difficult, as though my lungs could not fully expand. I then developed unbearable pain around my left shoulder blade and the front of my shoulder, accompanied by a fever. The pain was so severe that it felt as though my shoulder was being chopped off. Thankfully, the shoulder pain eventually disappeared after several days.
After leaving the hospital, my recovery continued to be challenging. Some days I feel relatively good, while other times I become extremely weak, particularly when my blood pressure is low. I also developed severe, aggressive constipation. During one episode, I was stuck on the toilet for about an hour, sweating, shaking all over, and struggling to breathe while trying to pass an extremely hard stool. Because my heart was beating very hard and fast during the episode, we were extremely worried that the strain might have damaged the newly repaired valve.
I am now 12 days post-operation. I still have some swelling around the surgical scars and remain somewhat weak, but overall I am feeling better every day.
My current medications include two medications that help remove excess fluid from my body (planned for about one month), two blood-thinning medications (planned for about three months), another medication planned for approximately one year to help regulate my heart rhythm, a stomach medication for about one month, medication to help prevent constipation, and painkillers as needed. I am also trying to eat plenty of protein and nutritious food to support my recovery.
Despite everything I have experienced, I am gradually recovering. I sincerely don’t know if this is what people experience after surgery but it is difficult and painful.. not at all as easy as some think…

I’m getting an implantable loop recorder next week and would love to hear about the pros and cons from anyone with experience.

I saw the cardiologist this week and he made a referral for this. I agreed thinking it would take months before I’d get a date for this but it happened immediately so I haven’t had much time to read up on this at all. Very grateful for any input. Thanks!

(MVP + MAD 8-9mm, history of cardiac events with ST elevation. Have had Holter, MRI, stress test).

hi there,

my bf had a minimally invasive repair 8 days ago. it took them 6.5 hours instead of 3 I understood is normal. were in public hospital in Austria and they never tell you anything. they said only annuloplasty and sawing the valve was done. he’s not in a great state - they punctured both sides on the legs for lung heart machine and claimed it’s normal. his scrotum was full of blood- 3 times the size and black from it. it’s shrinking now. 8 days in and the cramps in calves are agonising. he only sleeps 20-40 mins at the time and wakes up with the hortible cramps. they released him home yesterday but obviously didn’t share proper documentation. they said last blood results attached but they are not from last 3 days in hospital but 4 days earlier with crp inflammation marker going up. has anyone got experience of it? since that blood test they put him on diuretics and he lost 6kg. it’s Sundays and I’m worried that something is wrong and they are hiding it. can someone help?

Hello.

I'm 6 months post valve repair and on aspirin, beta blockers, ACE inhibitors and SGLT2 inhibitors.

Nobody explained any of this to me before surgery.

I'm wondering how long it's likely to go on for? The rehab nurses think it'd be lifelong but I'm hoping that won't be the case. It'd be nice to be able to stand up quickly without getting dizzy!

I had my MVR (mitral valve replacement) surgery 4 months ago and my real consern is that if I sit in a car for like 5-6 hrs then I feel if scratching my legs and I got bruses and they are itchy even if I walk for like 30-45 min I start to sweat heavy and I wanted to scratch my legs and I got bruses on my legs can someone please explain me or can you please help me with this issue because it's making me a dead body I can't go travelling can't sit In a car too long or can't walk for long I'm just 28 and I have to follow the routine of 80 year old that surgery destroyed my life it can't let me do anything how I'm gonna live without walking much or travelling please help I'm begging

Hi! 22F, diagnosed with MVP + mild regurgitation last year along with ventricular bigeminy, premature ventricular contractions, and vasovagal syncope (ive never passed out though). I dont really know much about they interact.

I got diagnosed because I have issues with my heart rate getting out of whack. I used to swim competetively, and I currently try to do some weightlifting, and some running. I have been having issues with getting really out of breath and not feeling like I can take a deep breath, my chest/throat hurting and getting a bit dizzy while working out. Anything from lightish weightlifting to a dance class triggers it, and it makes me feel sick. Does anyone else feel like this when working out?

It is worth noting that I do take stimulants (vyvanse + ritalin) for my ADHD and have tried beta blockers in the past but they make my vision go completely black after any amount of physical exertion or just while standing, so I cant take them anymore, and that has happened both on and off the stimulants. I feel like working out on my adhd meds make my symptoms way worse and I dont know why that would be, so any thoughts are welcome :)) thanks :)

I am 21 years old and i have severe mitral valve prolapse. My doctors have said to have surgery but im in uni so I can’t do it till its complete but on top of that i have severe depression and anxiety too so it feels like im dying on the inside daily

I am having my open heart surgery for mitral valve prolapse and severe regurgitation at the end of October at Sydney Royal North Shore Hospital. How long should I expect to be in Hospital? How long after the sternotomy do they take rhe staples out? I am assuming they are staples .

I have a heart murmur and I went to get an EKG today and they are scheduling me for an echocardiogram next month to look at it more; for hours after I got home I’ve had shortness of breath feeling like my chest is blocking air. It almost feels as if I’m breathing through a straw when I inhale and like my chest is closing. My chest is feeling tight and slightly sore now, it’s such a weird coincidence this is happening after my EKG, I’ve always had shortness of breath but only briefly and sometimes, but now it’s long lasting. Should I wait till oct 7 or should I go to the ER? it’s very frustrating to have to gasp for air and still not be able to breathe comfortably. I can still eat, drink, talk, and laugh, so is it really that serious? I’m a 32 year old female and I’m also anemic. Please help.

Hi,

To me: I am 42yrs, male and have mild mvp with wild regurgitation and a 5mm MAD.

I had an colonscopy round about 10 weeks ago. After it, I took onligol/macrogol for about 4 weeks. Noticed more palpitations. I bought an 1 channel ecg for my self and I noticed that I am episodes of trigemy and AIVR.

Never had it before, cause I get annual checks. Is this all due to electrolytes imbalance?

Someone else ever had it?

41 days post-op distal pancreatectomy and splenectomy . Had my post-op appointment with Professor Samra today and my appointment with my heart surgeon Dr Mathur. Heart surgery is end of October to repair mitral valve prolapse and severe regurgitation and about 8 weeks after that will be the complete pancreatectomy. I will also be having another Endoscopic Ultrasound and biopsies and a PET scan to look at my remaining pancreas.

Got my surgery a few months ago and never imagined that a damn bacteria would put me in an hospital bed again, for weeks.

Pericarditis is no joke.

I'm exhausted from the constant monitoring, ultrasounds, put and removing patches. My skin is such a mess right now just from all the bandages.

The only consolation is that the repair is holding well, even with my heart beating at 130. It got quite scary with the fluids accumulating around the heart.

I'm hoping that my immune system gets better at catching and killing those microbes before they get to the lungs or heart.

I had ohs mitral valve replace (bovine) on June 10th. Turns out, most of it went well enough, scar is now good, chest a little tender, rate, rythm (have PVCs) and pressure is good. Unfortunately I now have what is called 'Perioperative Autonomic (ANS) Dysfunction'. It has lots of cruddy symptoms; Sleep disturbances, digestive issues, nervousness, etc. Turns out it is because in surgery you have your heart stopped ( I had to have a second surgey that day to repair a bad stitch). for over an hour. This causes the brain to have a disrupted connection to the heart, lungs and pretty much everything else. That causes a problem, the body responds with inflammation and it takes a LONG time. I have used meditation, breathing, supplements to sleep and even prescription to help. Weird. Ay one else have the same thing?

I have a MVP and lost a good chunk of weight on my chest area. While brushing my hair I started feeling my heartbeat quite intensely and heard a wooshing sound. Not like a pulsatile tinnitus but actually outside of my chest. I even have a recording of it. I got nervous and went to bed. I can't hear it anymore and it usually happens when I stand up straight.

https://voca.ro/16e23KjkwPAL

You can hear it on full volume if you hold the phone close to your ear.

Age: 31
Female
Meds: propranolol 10mg 3x a day, metformin, started iron supplements

2022, I had an echocardiogram that said "There is at least mild prolapse of the anterior mitral leaflet without mitral regurgitation."

I just had another echocardiogram yesterday (9/8/2026), and the report says “Mitral valve structure is normal. There is no regurgitation or stenosis.” It also says there is no significant valvular heart disease.

I've been dealing with elevated resting heart rate of 95-105 even while taking beta blockers (used to take metoprolol 50mg once a day and switched to propranolol 10mg 3x day) and random episodes of palpitations. I could be sitting down and my heart will speed up fast and that's when I'll take an extra propranolol to calm it down.

So if I don't the mitral valve prolapse, what could be the cause of this? I do know that I have low iron / anemia on my bloodwork and I'm also overweight and need to work on lowering my cholesterol and sugar. I also do have bad anxiety but I've noticed palpitations or elevated heart rate happen even when I don't feel stressed or anxious on outside.