valve replacement w/tumor

[Val]

Abut 7-8 years ago, I was diagnosed w/heart murmur. No big deal, doctor kept an eye on it. Last year or so, gotten worse. Recently, much worse. Doctor sent me for echocardigram, didn't like what they saw, so they sent me for TEE. Discovered that I have a tumor attached to my aortal valve. In order for them to see it better, had the heart catheterization done just this past Monday (12/08). Doctors decided it MUST be removed. They aren't sure until they get in there how involved the tumor is with the valve. Don't know if they can remove the tumor without replacing the valve, or may have to replace valve as well. Dr says this is, yet isn't unusual. Says they maybe see this type of thing 2-3 times a year. Said the tumor could have grown anywhere in my body, but decided to show up there. Pretty certain it's not cancerous, although, again, won't know until they get in there. Surgery scheduled for 12/29. Scared witless!!!
Has anyone else had, or heard of anything like this? I have been reading these postings, and feel a little better about the surgery. I know it's a fairly common procedure anymore, but it's different when it's me their opening up!! I had to have thoracic surgery a while ago and the main thing I can remember is the pain and discomfor from the chest tube, and how much it hurt. I still have residual pain from the original surgery. I can't even begin to imagine how I'm going to deal with this, too. Any suggestions? Anyone else been through this?

 

[Karlynn]

Val,
Welcome to our VR family. I guarantee that you won't find support like this forum has to offer, anyplace else. There are a lot of people here willing to walk along side you through this.

I don't know if there is anyone here who has experienced your valve issue involving a tumor, but I'm sure they'll pipe up if they have.

So far you are right on track - being scared "witless" is just about a requirement. But it gets better from there.

As far as the pain goes - I'll let the more recent surgery members speak more about that, but for me it wasn't anything unmanageable, and I'm a big baby when it comes to pain.

Welcome again!
Karlynn

 

[Ross]

Hello Val and welcome to the forum.

Your case is a little unusual. First things first. Take a deep breath and exhale. Relax. We've been through this so we know what your feeling.

The surgery itself is performed daily. The pain isn't as bad as you might imagine, but you'll still have the chest tubes to contend with. Now a days, they keep your pain managed very well. You'll be out of it for most of it. I'm running with the assumption that they are going to have to replace the valve, so we'll deal with it as such. If they don't, hey great!

First you want to find a surgeon who has done tons of these procedures. Did you have any place in mind? The next step is to try and choose a valve. In your case, this may be difficult because no one knows for sure what they'll have to do. I would think they'd go with mechanical and possibly a partial aortic graft. I'm just guessing here.

Best thing for you to do is to start reading any thread or subject that you think would be interesting to you. Gather as much information as you can stand. It's all overwhelming at first, but it does get easier. Once you've done that, then come back with any questions that you didn't find addressed and we'll address those.

Again welcome and try to relax. I know it's easier said then done, but try. Your amongst friends here.

 

[nadi]

Hi Val and welcome,

My surgery was 7 months ago and I still remember the scared "witless" part! The kind and wonderful people here really helped keep me sane!! My family tried, and they were wonderful, but as several others have noted in other threads friends and some family members just don't get it. Just remember we are here.

As Ross just said and what was suggested to me. Read, Read, and read some more. You can do searches for specific things or just go hunting. Any thing you don't find or need more info just ask someone here usually knows the answer or knows how to get the answer.


Again welcome and take care,

 

[Nancy]

Hi Val-

Welcome to the site. We have a friend of the family who had a tumor in her heart (myxoma). These absolutely have to be removed. Hers did not involve her valve, but she had the surgery over a year ago, and is doing very well, last I heard, she was back playing tennis again. Hers was benign.

She is no longer active on the site, but I have a couple of links to her posts, so you can see how well her surgery went.

http://valvereplacement.com/forums/showthread.php?s=&postid=19471#post19471

http://valvereplacement.com/forums/showthread.php?s=&postid=23165#post23165

Your doctor is confident that it can be taken care of, so stick with us and we'll get you prepared for surgery.

We've all either been through surgery or have someone close to us who has. In my case, my husband has had 3 valve surgeries, and a ton of other stuff.

You're among friends who understand here, and you'll get lots of support.

Best wishes,

 

[bvdr]

Hi Val,

Welcome to this site. My sister's mother-in-law was diagnosed with a tumor in her heart about 6 years ago. She was about 79 at the time and she too was told to have it removed as soon as possible. This she did (in the Grand Rapids, Mich. area) and in her case it proved to be malignant. She did not require valve replacement. She did well with the surgery, though for several months required supplemental oxygen. She also went through I believe both radiation and chemo therapy.

She has done amazingly well. She has had several trips to Florida to visit family, takes care of her home, husband, and carries on her activities of daily living without assistance.

Unfortunately, a couple of months ago a return of the cancer was discovered. She completed a short course of chemo and decided she didn't want to go through anymore treatment. She is 85 now and decided enough is enough.

I hope your tumor proves to be benign, but even if it isn't, there is hope.

 

[Tom]

Hi Val,

I had a tumor in my ventricular outflow tract, a benign papillary fibroelastoma. It was removed and my aortic valve was replaced with a homograft in 1999. My surgery was with Dr. Schaff at Mayo Clinic in Rochester. It went fine and I am doing well. They have seen a lot of these at Mayo.

Best regards,
Tom

 

[Georgia]

Hi, Val

Hi, Val

I'm sorry you have this problem.

I had surgery 10 months ago (!) - hard to believe it's been that long.

Chest tubes - make sure your surgeon and his/her PA knows you have great fear of them and their removal and they'll dope you up more than the average.

Pain - they keep your pain well under control these days. They want you up and walking and deep breathing and you can't do these things if you're in pain. If you have problems with any pain meds you need to let them know so they can substitute. For instance, morphine made me really nauseated and I couldn't walk because of it; they took care of that right quick!!!!

Frankly, I'm have sciatic nerve pain right now that hurts a lot more than the sternotomy.

You've certainly found the right home away from home. Welcome.

 

[ticktock]

chest tubes

chest tubes

Val
I have had 4 heart surgeries.... when I was much younger, I always told folks the removal of the tubes was the worst part. BUT, as mentioned above, I told the Doc's the last two times that I wanted DRUGS prior to removal... and they did. I don't even remember it happening!! I believe I got morphine IV each time... by some very nice nurses who understood the fear/pain.
The best of luck to you, will keep you in my prayers....

 

[Val]

Val's surgery day 12/29

Val's surgery day 12/29

No surgery yet for my valve replacement.
I was supposed to have my surgery on 12/29. All ready to go, and came down with the flu the day before. Called my doctor, and he said no go. Can't do the surgery while you're sick. So, it's been postponed until I get over this. I've pretty mich been living between my bed and my couch the past few days. I haven't left the house since last Saturday 12/27.
Never a dull moment!
Thanks for all your advice, well wishes and prayers. Keep 'em coming - I can use all the help I can get.
I'll let you know when I'm rescheduled.

 

[Nancy]

Hi Val-

I'm glad you let us know what was going on.

It's such a disappointment to be all ready to go, and have to have it put on hold, but you'll be scheduled asap as soon as you're better.

Hang around a schmooz with us while you're waiting.

Take care,

 

[fyrfytr]

Hi Val,
Welcome to this Wonderful Site.
Sorry to hear you got sick before your surgery. I hope you are getting better and they are able to get you rescheduled soon.
Please keep us posted and hey stick around and join in with us.
You are in my thoughts and prayers.
Take Care and Happy New Year!

 

[Karlynn]

Val,
Sorry to hear of your postponement AND of your flu. Rest, fluids, rest, relax, more rest. Then walk around some.

Let us know when you reschedule.

Best wishes,
Karlynn

 

[Missy]

Val,
I don't know a thing about your heart problems. But just wanted to welcome you and wish you well.
We can all certainly give you encouragement. Each of us has our own heart conditions but we have all been through the scared part.
I saw several posts with similiar conditions to yours and that some understand totally what you are talking about.
Good luck!