we're new here :)

[Guest]

hello all,
we're new here. my husband was just diagnosed with severe mvp with mitral regurgitation. he's only 30 and we're hoping he can make it a year before surgery. the doctor put him on lisinopril and hydralazine. the latter is making him pretty sick. can anyone tell me if the side effects will subside? we're really thankful for this website, by the way i know it's going to be an indispensible part of this process.
hannah

 

[nngbwh]

Welcome aboard. I do not take hydralazine so i can't really tell you the side effects. Hopefully someone here will give you more
info.

 

[dick0236]

Hi Nate & Hannah:biggrin2:. There are a lot of us here that were around 30, or younger, when surgery was required. You will get a LOT of good info on this site. Ask your pharmacist about the side effects....usually they know drug info better than docs.

 

[ryen0]

hello all,
we're new here. my husband was just diagnosed with severe mvp with mitral regurgitation. he's only 30 and we're hoping he can make it a year before surgery. the doctor put him on lisinopril and hydralazine. the latter is making him pretty sick. can anyone tell me if the side effects will subside? we're really thankful for this website, by the way i know it's going to be an indispensible part of this process.
hannah

If he does end up needing surgery, i have one word for you. Davinci!

 

[Guest]

If he does end up needing surgery, i have one word for you. Davinci!

i've been reading a lot about the da vinci system! i'm so glad that's an option now! did you have surgery via da vinci? if so, how long was your recovery. we're new to all of this so we'd appreciate all the information we can get we know he's going to have to have surgery, we just don't know how long it will be...depends on how well the meds work i suppose.
hannah

 

[ryen0]

i've been reading a lot about the da vinci system! i'm so glad that's an option now! did you have surgery via da vinci? if so, how long was your recovery. we're new to all of this so we'd appreciate all the information we can get we know he's going to have to have surgery, we just don't know how long it will be...depends on how well the meds work i suppose.
hannah

Yeah, i had the davinci method done here in atlanta at St. Josephs. I was in the hospital for four days and went back to work about 3 weeks after that. Less risk of complications, minimal scarring, and a +95% chance of repair over replacement. If you have any other questions i can help you with don't hesitate to send me a message

 

[Guest]

Yeah, i had the davinci method done here in atlanta at St. Josephs. I was in the hospital for four days and went back to work about 3 weeks after that. Less risk of complications, minimal scarring, and a +95% chance of repair over replacement. If you have any other questions i can help you with don't hesitate to send me a message

i'll definitely have to pick your brain when we get closer to surgery thanks so much for the information.
hannah

 

[ALCapshaw2]

It would be wise to start interviewing Surgeons about your husband's condition and prognosis, especially if you are interested in 'special options'. One of our primary recommendations is to find a Surgeon who has Lots of Experience (and a good track record) performing the Procedure that YOU wil need or desire. (i.e. if you are interested in the DaVinci Method, talk to a Surgeon who actually performs that type of surgery.) You could ask your Cardiologist for recommendations and/or just call the offices of Surgeons of interest. They will want to see copies of your Test Results and the actual Tapes or CD's of his EchoCardiogram and Angiogram (Heart Catheterization) plus any other tests he has had.

I'm curious about your desire to postpone surgery for another year. Typically Heart Valve issues only get worse with time and eventually a point is reached where there can be Permanent Damage to the Heart Muscles and Walls, "even if" the Valve Replacement Surgery is successful. SO, my questions for your Doctors would be "What is the Benefit of Waiting? and What are the Risks of Waiting"? It is my belief that Surgeons would have a better feel for those issues (as opposed to Cardiologists). BTW, the window for doing Repairs may not last long so Sooner is usually Better.

'AL Capshaw'

 

[ejc61]

Hello Nate & Hannah,

I had MVP with severe regurgitation. I was getting echo's 2x per year for several years to monitor the size of my left atrium. I think that will be the determining decision factor for your cardiology team. Has you been told that your atrium is getting bigger? It got to about 6+ when it was decided that surgery was recommended. At that point, I waited about 3 months before my surgery was done. I was fairly young, 47, in fairly good shape and no other issues other that a torn mitral valve determined by TEE. In this order after that last echo, I had a TEE which takes a picture of the heart with a camera down your throat; a heart cath to check the condition of my arteries around my heart and above the waist; and a CT Scan to check other vessels below the waist. It was determined that everything was clear and free and that I'd be a good candidate for mimimally invasive. The two methods are mini-thoracotomy which goes through the right rib (2-3" incision) or robotic which has about five (5) 1/4" incisions. If you are a good candidate, I would strongly look at robotic. I had surgery on Thursday afternoon and left the hospital Sunday afternoon. I was walking a mile a day within a week and went back to work in about 17 calendar days. Granted I have a desk job and I was are a bit out of sorts. I did have some pleural effusion afterwards but that is not that uncommon and it usually goes away on it's own. But that is a risk regardless of the technique.

 

[Guest]

It would be wise to start interviewing Surgeons about your husband's condition and prognosis, especially if you are interested in 'special options'. One of our primary recommendations is to find a Surgeon who has Lots of Experience (and a good track record) performing the Procedure that YOU wil need or desire. (i.e. if you are interested in the DaVinci Method, talk to a Surgeon who actually performs that type of surgery.) You could ask your Cardiologist for recommendations and/or just call the offices of Surgeons of interest. They will want to see copies of your Test Results and the actual Tapes or CD's of his EchoCardiogram and Angiogram (Heart Catheterization) plus any other tests he has had.

I'm curious about your desire to postpone surgery for another year. Typically Heart Valve issues only get worse with time and eventually a point is reached where there can be Permanent Damage to the Heart Muscles and Walls, "even if" the Valve Replacement Surgery is successful. SO, my questions for your Doctors would be "What is the Benefit of Waiting? and What are the Risks of Waiting"? It is my belief that Surgeons would have a better feel for those issues (as opposed to Cardiologists). BTW, the window for doing Repairs may not last long so Sooner is usually Better.

'AL Capshaw'

according to the cardiologist, they like to have about a years worth of data before they do surgery. looking back, this is something that should have been diagnosed at least 2 years ago when the major symptoms started. since this was his first echo, they don't have anything to compare the results to. they said his heart is enlarged but they don't really know by how much. i'm very much with you in that sometimes it's more of a quality of life issue than how long can we put it off...especially since we have 2 young kids that have lots of energy
i'll definitely keep those questions in mind when we talk to his doctor next time. he did say there are no calcium deposits on his valve so that makes me feel like a repair will be a probably option. one thing i'm really thankful for is that he is going to U of Penn. from what i've heard, they were one of 8 hospitals to do the clinical trials for the da vinci system so they've used it for a while. hopefully, we'll know more in a couple months. thanks for your input...we'll be asking the doctor some of those very questions.
hannah

 

[Marcia58]

Hannah,
My prolapse was discovered when I was in my 20s, but I didn't become symptomatic until I was 50. Then it went downhill fast! Keep a close eye on your husband. Some of us heart patients are prone to write off our symptoms as, "up late, out of shape, fighting a cold, stressed." If you think it's his heart, BE PERSISTENT!

Also, you might want to talk to a cardiac surgeon, and not just a cardiologist. Many people on here have found that cardiologists tend to wait longer (occasionally too much longer) before considering the patient surgery-ready.

If you find he isn't a candidate for daVinci, you should ask about mini-thoracotomy. I had a mini-thor on a Thursday and was discharged the next Tuesday. I had a 4 week post-op check, when all restrictions were removed. At 6 weeks, I carried my 2yo granddaughter on my shoulders for a half mile w/o any problems. (and I'm only 5'4", 110 lbs)

Marcia

 

[Luana]

according to the cardiologist, they like to have about a years worth of data before they do surgery.
hannah

Hi Nate and Hannah,
That statement makes me feel real uncomfortable. A year could mean Nate's condition gets a whole lot worse in that time, while they get more data? Sorry, but that just doesn't sound right to me, especially if they're throwing words around like "severe" now; how much worse would they like it to be? If he was diagnosed by an echo, it sounds like cardiac catheterization would be in order to determine thing better.

As for the surgery, the da Vinci repair, would be great if he's a candidate for it, not everyone is, and usually when a valve is categorized as having severe problems it's more likely to need replacement rather than repair. If he's not a candidate for repair, he may be able to have a more minimally invasive surgery with a mini thoracotomy, 3-inch incision between 2 ribs. I had that when I had AVR surgery. I highly recommend this for much less pain. When the sternum is not broken, there's no problem getting out of bed and no need to sleep in a recliner, which are some of the main problems many have after sternotomy.

In the meantime, I'd either be getting another opinion or going back to the same doc and getting more answers about why not sooner.

 

[Guest]

i think so far he's just been categorized as "moderate". my big issue with waiting is that he's so symptomatic. his next echo is in a couple months so i'm going to have my list of questions ready everyone's input has been a big help!

 

[ejc61]

Nate,
I agree with Luana regarding the cardiologist quote. While I had 3 years of data and significant regrug, my atrium was somewhat stable in size until it started getting bigger.

I was kind of told by a surgeon, that as long as you have pretty clear arteries, vessels and such, that helps the case for mini-thor or robotics. I'd find out what the size of your atrium is. I wouldn't wait a year regardless of the technique used. Checking out Penn is a great idea.

Also, I believe that there is the capablility of MV replacement robotically also.

 

[ALCapshaw2]

As others have also suggested, (Old School) Cardiologists like to postpone surgery as long as possible which can sometimes lead to permanent damage to the Heart Muscles and Walls and/or reduce the surgical options.

Surgeons like to Get In Early enough to FIX the problem with minimal complications after surgery.

I second the recommendation to get second opinions and to get them from Surgeon(s).

'AL Capshaw'

 

[pikacat]

Yeah I'm under the impression that as Al said, that some cardiologists may recommend surgery even if the measurements don't seem too bad if the symptoms suggest it (which they may in your case). So you might want to get a second opinion.

 

[pnwcoast]

When you go talk with a surgeon, ask the surgeon about repair success and failure and how long a repair might last. My mitral repair lasted a whole couple of years. I certainly would have considered a replacement had I known a repair may not last.
It didn't cross my mind to ask about how long a repair was expected to last when I talked with my surgeon. I thought a repiar was a repair and you were done with it.

 

[ejc61]

When you go talk with a surgeon, ask the surgeon about repair success and failure and how long a repair might last. My mitral repair lasted a whole couple of years. I certainly would have considered a replacement had I known a repair may not last.
It didn't cross my mind to ask about how long a repair was expected to last when I talked with my surgeon. I thought a repiar was a repair and you were done with it.

I was told by the two surgeons I spoke with that a repair can last about 10 years. I did it knowing that that the valve will have to be reviewed again. The thing to think about is that in 10 years, there may be new techniques even less invasive. Unfortunately, I don't think we're ever really done with it. But I think you try to minimize the severity of the procedures.

 

[pikacat]

I was told by the two surgeons I spoke with that a repair can last about 10 years. I did it knowing that that the valve will have to be reviewed again. The thing to think about is that in 10 years, there may be new techniques even less invasive. Unfortunately, I don't think we're ever really done with it. But I think you try to minimize the severity of the procedures.

I think that's individual and depends on your case. My repaired mitral valve has lasted 11 years and may last my whole life. It is unknown if my surgeon will replace my mitral valve this coming surgery. He will assess the situation when he's looking at my mitral valve during my surgery. As of right now, it would last at least another 15-20 years, my surgeon thought. But it kind of defeats the purpose of giving me mechanical valves if I'd need another surgery in 15 years anyway. But anyway, repairs are probably dependent on the situation.

 

[ejc61]

I think that's individual and depends on your case. My repaired mitral valve has lasted 11 years and may last my whole life. It is unknown if my surgeon will replace my mitral valve this coming surgery. He will assess the situation when he's looking at my mitral valve during my surgery. As of right now, it would last at least another 15-20 years, my surgeon thought. But it kind of defeats the purpose of giving me mechanical valves if I'd need another surgery in 15 years anyway. But anyway, repairs are probably dependent on the situation.

Well that's good to hear that repairs can last longer. It really does depend on the individual's case. In my case, the plan was to go mechanical if the repair couldn't be made. I'm still not sure if that would have been the correct decision. All I know is that I have to keep up with things.