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Nupur

Well-known member
Joined
Sep 13, 2008
Messages
411
Location
SF Bay Area, CA
Hello,

I am so glad I found this forum! I am a 42 year old mom in Northern CA (Bay Area). Never had any heart murmur until after childbirth (2002). Even then,
the murmur was just mentioned. I have never done physical checkups every
year. This year, I went for one after almost 6 years. My PCP said
I need to do an ECG. And then, shockingly, I was told that I have severe
mitral regurgitation. Finally had a TEE last week. I am told that my regurgitation is almost grade 4, the prolapse is in the anterior leaflet and I
will likely need replacement. Right now, the ventricle size is fine, so
my cardiologist will do another ECG in 6months, and send me to the surgeon
if there is a change in size. But repair/replacement is inevitable.

I have done a lot of reading in the last few weeks, and I feel that I need to
look for a surgeon ahead of time, so that I can maximize my chances of
repair rather than replacement. Also, I have read that now they offer
surgery to asymptomatic patients with grade 4 regurgitation. I have no
real symptoms, but do get palpitations at nite while sleeping once in a
while.

I am sure I will have many questions for experienced members of this forum
as I learn more about surgery. I am very glad to have connected with folks
who have gone through this, and look forward to being on this forum.

Thanks for listening!

Nupur
 
Hi Nupur,

Sorry for the reason but happy you found us.
The news is shocking for many of us when we hear we are facing OHS. Only those of us who have been there and heard the words spoken to us truly understand.

This is a very caring, well informed, supportive group of people and certainly helped me through my second OHS surgery six months ago (mitral valve bovine replacement). I found the site not long after my first OHS four and a half years ago.

Ask all you questions and it is likely many will occur to you. Almost always someone here can and is willing to help.

Take some deep breaths. You will get through this. We all have (or one of our loved ones have) and you will, too.
 
I think that is very smart of you to start looking for a surgeon now while there is no rush and when you can take the time to check the various surgeons out. Look for one who has a lot of experience with mitral valve repairs.
 
Welcome, Nupur. I'm glad you found us. This is a great place to do your research and get feedback from those who have gone before you. There are CA members and you might do a search (for instance "CA Surgeon") and come up with members who have suggestions as to a good surgeon in your area. We look forward to helping you as you embark on this journery and I hope you are in the waiting room for a long time.
 
Hi and welcome. I agree, to look for a surgeon now is a good idea. You will have time to do some research. This forum has a wealth of information. If you have questions, ask away, someone can usually help. Good luck to you.
 
Greetings and Welcome Nupur to your new cyber family.
Unlike you, I had no time to research anything. Do all the research you can and ask us anything you want. No question is to dumb or stupid so don't be shy.
 
Welcome to VR. Glad you found us. I had a mitral valve repair. I had no history of heart problems and had a physical check-up every year since I turned 40. A few years ago at my annual check-up my doctor told me there was a heart murmur that wasn't there before and was referred to a Cardiologist who ultimately referred me to a Surgeon. A year later I had the repair. The surgeon said I wasn't an urgent case but the regurg was severe and OHS was inevitable so he recommended I do it sooner rather than later to avoid possible permanent damage and to have the best chance of saving my natural valve through a repair instead of having to replace it. For this reason, if you want to maximumize your chances for a repair, I suggest you seek the advice of a surgeon sooner rather than later. Best wishes and good luck.
 
Your instincts are 'right on'. It is always best to find a Surgeon you are comfortable with BEFORE you become critical, especially if you are hoping for a REPAIR.

Bottom Line: Find a Surgeon with LOTS of Experience doing the procedure YOU need (i.e. a Repair). Also be sure to have a 'Plan B', just in case the repair does not work.

One of the Top Aortic Surgeons in your area is Dr. Craig Miller at Stanford. I don't know about his MV Repair skills but you could call his office and ask (or ask who he would recommend).
 
Thank you all for making me feel welcome! I have been very scared and anxious, and
being around people who have had this experience (albeit virtually) is very
reassuring. And thanks for the vote of confidence in my plan for finding a surgeon
early on while I have a year or more to research it.

Nupur
 
Hi and welcome!
Researching and asking questions in advance of surgery is a terrific idea! You might want to use the Search feature at the top of the page and type in mitral repair to find a multitude of threads on the subject.
Take you time and ask questions; we're here to answer the best we can!:)
 
NUPUR....welcome. I only found this site one week ago and my fears have been greatly reduced !! I too have MV regurg.....I have had an echo, TEE and cath. No one has told me the seriousness of the regurg.....I wonder what the levels are ....you said they told you that you are a four. I was shocked when my GYN told me of the murmur and then further shocked as within two weeks I had the battery of tests. I felt as if I were walking through a tunnel with no escape. The forum has certainly helped with the anxiety! I am waiting for a reply following the heart cath. I was thinking of trying to postpone surg, but the above posts make me wonder if that is wise. Keep us informed and welcome!
 
ponytaila1a said:
NUPUR....welcome. I only found this site one week ago and my fears have been greatly reduced !! I too have MV regurg.....I have had an echo, TEE and cath. No one has told me the seriousness of the regurg.....I wonder what the levels are ....you said they told you that you are a four. I was shocked when my GYN told me of the murmur and then further shocked as within two weeks I had the battery of tests. I felt as if I were walking through a tunnel with no escape. The forum has certainly helped with the anxiety! I am waiting for a reply following the heart cath. I was thinking of trying to postpone surg, but the above posts make me wonder if that is wise. Keep us informed and welcome!
Click to expand...

+1 is slight, not worth mentioning
+2 is mild, worthy of keeping an eye on
+3 is moderate, really keep an eye on it and maybe showing symptoms
+4 is Severe, surgery indicated as heart damage is slowly occuring, usually showing symptoms, but not always.
 
Hello and welcome,to a definately great place
of wonderful people who have been in your shoes
Glad you joined,and ask away!!:)


zipper2 (DEB)
 
Ponytaila1a,

I wanted to mention something about the grades. They can't always have accurate measurements. As I understand, the grade is determined by the regurgitation volume and regurgitation orifice. Although I had a TEE, which is supposed to be accurate, they couldn't really get exact numbers. This is because my regurgitation is very eccentric & close to the wall. So the only thing they said was 2/3rd of the atrium is getting filled with regurgitation. One Dr. classified it as severe, and the other said between a +3 and +4. I am surprised that with such severe regurgitation, I don't have any symptoms. My doctor said that sometimes people don't realize they are symptomatic because they just get used to it. She is doing a VO2 study on me on the 24th, where they measure the level of oxygen while doing a stress test.

I am really interested in knowing how much time I have before surgery, so I can prepare myself. I know my surgery will be tricky, since many surgeons don't do bi-leaflet repair. But I don't think there is any accurate measure to predict that.

Nupur
 
Hi Nurpur,
You are at the same place I was when I decided it was time. I had quite a few more years than you to be aware I had mitral valve prolapse/regurgitation. Like you my goal was to have a repair if possible so I decided to not take my cardiologist original recommendation to wait another year. I pressed him because of things I knew about my family history and so he ordered the TEE. After the test he was also convinced it was time.

It can't hurt to start looking for a surgeon you are comfortable with to do your surgery and get them to review your records. I don't believe my surgeon would have recommended surgery if I hadn't really need it.

I wish you the best.

Chris
 
Nupur said:
I am surprised that with such severe regurgitation, I don't have any symptoms. My doctor said that sometimes people don't realize they are symptomatic because they just get used to it.
Click to expand...

I'm sure that's true, especially in the case of relatively slow progression of valve disease, you either don't notice the signs or you chalk it up to getting older or being out of shape. I stopped jogging not because I wanted to stop, but because I couldn't do it anymore. Even my cardio told me "you're older, you're heavier" when I complained about my deteriorating ability to do more strenuous exercise, both of which are true to be sure, but I'm convinced that it's the valve disease at work.

Jim
 
Thanks for the comments on the levels. ...... also on the recommendations for surgeon and timing vs damage. I too most likely blamed symptoms on "old age" (just turned 62), and not working out hard enough. Since the dx I imagine symptoms at every turn! LOL!
 
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