Intro..and a few questions

shop deals on amazon
Shop deals on ebay
Advertise with us
Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.
S

SMS

Well-known member
Joined
Mar 16, 2009
Messages
63
Location
Benton Harbor, MI USA
Hi All. Well, if anyone had told me a year ago I would be posting on this site, I wouldn't have believed them. My name is Steve, and I am 45 years old. I developed MVP from nowhere about 7 years ago, had an Echo done, and was told that while the valve leakage was moderate 2+, it was nothing to worry about. Fast forward to this Feb, I started to have symptoms of what I thought was a cold or flu. I should mention this was about a month after having my teeth cleaned, no antibiotics, we don't need them anymore right?:( After 12 days of fever, chills, nausea and weight loss, I went back to the Clinic and demanded to see an MD, no more RN's or PA's (no offense intended) because after 2 visits, it was plain something was being missed. You probably guessed it by now it was Endocarditis. So it was 3 days and nights in the hospital for me. A TEE showed moderate severe 3+ regurgitation, and some vegetation on the posterior valve leaf. After that, it was PICC line city, and 4 weeks of Rocephin IV's which I will finish this Fri.

My Cardiologist stated that I will probably have to do something about this valve within a year. I am scheduled for another TEE on 4/2 to see the condition of things after the antibiotics. I have already contacted Cleveland Clinic and they e-mailed me a list of items to send them for a surgical review. Ultimately, I am going with whatever CC suggests, as I trust their reputation.

I guess my question would be, did any of you have surgery while you still had no symptoms? My hang up is voluntarily putting myself at risk in surgery while I still feel perfectly normal. Nothing has been set in stone yet and I am hoping for good news when when I hear from CC. Thanks for reading.

Steve

P.S. Takestock, if you read this, it looks like we have had a similar experience!
 
Welcome to VR. Sorry for the circumstances but glad you found us. I had a MV repair out of no where.....no heart problem history, no noticable symptoms. I have a routine check-up every year and nothing....then one year a heart murmur that wasn't there before. Referral to specialists, various tests, and a year later I'm in the OR having OHS. However, while I was feeling fine, and even surprised my Cardio on how well I did on the stress test dispite the valve leakage, the echo showed my heart chambers were starting to enlarge. My Surgeon said I could wait a year, maybe even more, but surgery was inevitable and there could be permanent damage if left too long. I figured if OHS was inevitable, and it was only a matter of time, then why wait and risk permanent damage. No regrets. The repair was a success. My heart chambers have returned to normal and the heart walls have thickened (they thin out when the heart chamber enlarges). The Surgeon even found an atrial septal defect (i.e. hole) while he was in there, that hadn't showed up in the other tests, and fixed it. Best wishes and good luck to you.
 
Steve, wow, as I was reading I thought "that guy sounds like me!". Welcome to VR. I'm sure you'll find as I have the people here are an incredible source for support and encouragement.

You might get lucky when you get your next TEE and it might show some improvement once the vegetation is gone. Mine did, but not quite enough to put off surgery. And no, I have ZERO symptoms, but will likely before the year is up. At most I could put this off for a year, but would spend the rest of 2009 with a cloud over me. Might as well get the waiting (=worst part) over with quickly.

Good luck on whatever you choose to do. I'll let you know how my surgery goes. For you, I will try to have a smooth and painfree recovery, just to give you some hope!! :D
 
Hi Steve, I had symptoms before my OHS, but I know there are people on here who didn't have them, I'm sure you'll hear from them soon! My brother had his MV repaired and he felt fine, only trouble he had was that he couldn't increase his running time. Other than that, none. Welcome to the site, it's a great place to be while not in such a great place to be. Lots of support to help see you through!
 
Well there is one thing for certain, you will not get any younger and that is a huge consideration in your recovery. While many on this board have recovered just fine at much older ages, give me a little youth any day!

I had surgery almost 10 years ago to repair the mitral valve. Within a year or so the valve began to leak again. My cardio hates surgery so he said we would monitor the valve every 3 months and track the Left atrium size as one of the indicators of how it was going.

Well it slowly enlarged over the years to where I now have a replacement scheduled for July. During that time my physical condition has deteriorated, we chased the increasing symptoms with more medicines, I had a T.I.A. due to A-fib and Coumadin dose issues, luckily I escaped with no lasting symptoms, Fluid has now begun building in my legs, my heart enlarged etc..

I wish I would have insisted on replacement several years ago as now I am in worse condition and physically I am concerned the recovery will be more difficult because of it. You would have a very difficult time convincing me to wait. From what I know, once it starts leaking, unless there is some great advancement and approval of stem cell repair, it won’t get better.

Your getting great advice here and at The CC so you everything you need to make the best decision for you. I wish you the best
 
TakeStock said:
Steve, wow, as I was reading I thought "that guy sounds like me!". Welcome to VR. I'm sure you'll find as I have the people here are an incredible source for support and encouragement.

You might get lucky when you get your next TEE and it might show some improvement once the vegetation is gone. Mine did, but not quite enough to put off surgery. And no, I have ZERO symptoms, but will likely before the year is up. At most I could put this off for a year, but would spend the rest of 2009 with a cloud over me. Might as well get the waiting (=worst part) over with quickly.

Good luck on whatever you choose to do. I'll let you know how my surgery goes. For you, I will try to have a smooth and painfree recovery, just to give you some hope!! :D
Click to expand...

Thanks Bill! By the way, it was streptococcus gordonii that got me.
 
Hi SMS. I had endocarditis caused by streptoccocus virdans (sp?). It was not from a dental appointment as I always had antibiotics beforehand. It must have been a slightly bleeding gum. I waited 13 days before finally going to the ER. I was in the hospital for 5 days and then on the PICC line for 4 more weeks. It was at the hospital that they told me I should have valve surgery. I was in shock and asked my ex-cardiologist who said I did not need surgery. I then got a few other opinions, and to make a long, long story short, after finding an excellent surgeon at the Montreal Heart Institute, I realized that despite the fact that I did not have symptoms at that time, that I should have the surgery pretty soon. As it turned out, about 8 months later I went into atrial fibrillation at which time it became urgent.

In any case, my surgeon was able to do a complicated repair despite the calcification which was caused by the endocarditis.

Since you will be going to the Cleveland Clinic, you know you will have the best surgeons, so if a repair is possible, it will be done.
 
SMS said:
Thanks Bill! By the way, it was streptococcus gordonii that got me.
Click to expand...

I had the same thing as Adrienne, strep viridans, caused by just brushing/flossing. I didn't have MVP, to my knowledge, although I may have had a very mild prolapse with no symptoms. I did apparently have a torn chordae that appears to not be caused by the same endocarditis but was damaged around the same time. So my case is probably very unique, but, hey, if you gotta get an OHS might as well be for something out of the norm.

BTW, my first surgeon using the still-infected TEE results felt I needed surgery quickly, and then seemed surprised when my not-infected angio showed less leakage (he isn't the surgeon I'm going with :mad:). I assume CC will want to see the changes in your 4/2 TEE results before they render an opinion.
 
SMS, One of the first comments my cardiologist made re: AVR was that it is sometimes difficult to convince a patient w/ few or no symptoms to go ahead w/ the surgery before there is damage to the heart. I'm very glad I went ahead w/ it. I was fortunate and I hope you are too!
 
this sounds familiar (i'll be 45 next month)....

do a search on "asymptomatic" and you'll find loads of people who showed
no symptoms, or very few, or very minor, before surgery.

once you start reading and getting more informed, you may find you do
have some symptoms that you would have previously ignored.
 
Welcome to the site. I have no advice for you, but I'm sure other people will. Here is to wishing you the best of luck.

FYI

The Cleveland Clinic is the # 1 rated heart care center according to US News & World Report for 11(?) years running.
 
Welcome Steve,

There are many 40 somethings here on this forum : )

I developed MVP with 3+ regurgitation out of nowhere too! No murmur ever and then suddenly someone tells me the leak is mod-severe. I am in the waiting room like you and have been wondering about the very question of anti-biotics before dental work. Sorry to hear that your surgery has been hastened by endocarditis. But being so young no doubt you will recover quickly. Can your valve be repaired?
 
Hi and Welcome Steve.

First let me say I wish the best for good news.

I guess my question would be, did any of you have surgery while you still had no symptoms? My hang up is voluntarily putting myself at risk in surgery while I still feel perfectly normal. Nothing has been set in stone yet and I am hoping for good news when when I hear from CC. Thanks for reading.

To answer your question, "YES" I was one of those who had no symptoms. Heck, I had a complete physical (or so I thought a complete physical) 3 weeks before being rush to ER with SSOB (severe shortness of breath). They kept me for a 5 days for tests and 5 days later I was in having OHS. :eek:

I was feeling so good before they wheeled me in, that I came so close......I mean VERY close NOT signing the consent papers, no lie. My question to my surgeons assistant was "why would I want to sign these papers? I feel so good right now and in 24 hours I'm going to feel chit - why would I want to put myself through that?" Well her answer was, "well, even with medication in 2 years you could be dead." I had to quickly think what was coming up in 2 years that I had to be around for.

Fast forward to the persent......its very close on being two years since I signed those papers and I'll be around to see my son convocation from University.

Sometime a person gotta do what a person gotta do - even if they are in strong denial like I was about have this surgery. There are still days I can't believe I had this surgery............yep still in denial :eek:
 
TakeStock said:
BTW, my first surgeon using the still-infected TEE results felt I needed surgery quickly, and then seemed surprised when my not-infected angio showed less leakage (he isn't the surgeon I'm going with :mad:). I assume CC will want to see the changes in your 4/2 TEE results before they render an opinion.
Click to expand...

The only TEE I am sending them on DVD is the 4/2 one. The rest will just be the typed summary. As a side note, I had an echo in 4/07 and the results weren't that much different from my infected TEE, except for a possible torn chorda. I asked my Cardiologist "Why no surgical recommendation then?" He then started back pedaling saying we would just wait to see what CC says.
 
Steve .... Welcome to the zoo:D ... I walked through the hospital doors feeling just fine with the exception of being scared Sh#@less:D ... I talked to several doctors and everyone of them said the time for surgery is before symptoms develop, before the heart sustains permanent damage...... You are in good shape and that is the easiest way to climb this mountain you face .... Godspeed.
 
The problem with waiting for Symptoms is that Symptoms may not show up until there is DAMAGE to the Heart. Eventually this Damage can become Permanent if you 'wait too long'.

Recovery is also Better / Faster if you have surgery BEFORE there is Damage to the Heart Muscles / Walls.

Double Checking by TEE and Angiogram is Not a Bad Idea, just to "be sure" of the 'numbers'. If the numbers say "it's time", and a top surgeon agrees, get it fixed.

'AL Capshaw'
 
I was diagnosed with a BAV almost 25 years ago. My cardiologist monitored it on a yearly basis but I had no symptoms. I've been fairly active, exercised regularly, hiked, and sailed. Late last year my cardiologist informed me that things had deteriorated to the point that I should have surgery. It seemed that my aortic root had dilated to a point beyond his limits. Thing progressed fairly quickly with MRI's, angiograms, CT scans etc and my surgery was done on Feb. 12.

Like I said I had no symptoms except after I met the surgeon I started developing shortness of breath. I'm not sure if it was an actual symptom or if it was all in my head.

There were a couple of times post surgery when I wondered if it was worth it. I am now 5 weeks post surgery and starting to feel human again. I met with my cardiologist yesterday and he is happy with my recovery. No looking back now.

Good luck,
 
no symptoms

no symptoms

hey there.. i can relate..this saturday I went downhill skiing for 6 hours and was FINE! ok- my thighs burned a bit-but thats its! and with my 2nd suregery- i had no symptoms-- only a cough! so know its hard to bite the bullett and do it when you feel otherwise pretty great but i agree with what others have said- the time to do it is now- before the real damage occurs and symptoms appear! plus you will be stronger to come through it.

best of luck!

Megan
 
You must log in or register to reply here.

Latest posts

Back
Top