No Surgery Now!

[Babydoll]

Hi Everyone,
Well, I has almost there about to reach my surgery date of Sept. 8 and today I got a call from Dr. Bradley who is doing the surgery and he just informed me that he has had my case in medical review and he thinks that it's not my valve that is causing the problem even though there is a small narrowing he thinks it my be the sac around my heart becomeing hard that he doesn't think that it's my valve he said replacing the valve may or may not make my symptoms better. So he wants to run more tests and maybe another cath he needs to talk more with medical review to find out what they are going to do with me and that he would call tuesday and tell me if they came up with any answers. So no surgery for me am in a hold and see mode which I have been in for months I thought I was so close to being fix and on the way to feeling better. Been in tears all morning was so ready to get this over with I just want to feel better!
Stacey

 

[Nancy]

Oh Stacey-

This is so hard for you to deal with. Please get a second opinion and even a third.

I'm wondering how this came so far down the road without being discovered sooner.

I am very sorry you have to go through this.

 

[Gnusgal]

I know EXACTLY how you feel. But hey, for me, it was the DAY OF SURGERY when my surgeon came in and told me he wasn't ready to do it . He just didn't feel he had enough information to feel comfortable going forward and he wanted to get more tests run. I was sitting in the waiting room prepared to go in for surgery when he came out with this news. But the way I figure it is, at least they are looking at it from every possible angle and trying to do what is best for you, not just what is easiest for them. Sure, he could go ahead and do the surgery and get some $$ in his pocket and it may or may not make you feel better. But he's wanting to make sure that it is going to make you feel better before he puts you through surgery. And that's a good thing, in my opinion. Try to see it that way, instead of as another delay. He's got your best interests in mind, not his own. If you're still not comfortable, do as Nancy suggests and seek another opinion.

In my situation, my surgeon had me have a TEE that day, then consulted with a whole slew of surgeons. We ended up having the surgery a week later. I'm glad he decided to review things, personally.

Keep your chin up! We all know that waiting is the worst, but this too shall pass...

 

[LUVMyBirman]

Good news for you! As Nancy said...get another opinion to cover all of your bases. There may be some simple solution so you can avoid surgery.

My surgeon looked me point blank and said "wish I did not have to offer such a serious operation to such a healthy looking young lady". My husband asked him if he was certain I needed it. On two seperate occasions. Guess we were in denial. Sugeons words to this day are very fresh in our minds. It's been almost 6 years!

Wish you all the best Stacey. Please keep us posted!

 

[Susan BAV]

It's hard Stacey; I feel for you!

I remember twenty-five years ago, right before my first heart surgery, a cardio at the hospital in Houston (my folks drove me there from the midwest because they wanted Dr. Cooley to do the surgery) came into my room when I was all alone and told me that he had looked at my medical information and my coaractation didn't need surgery. I was not quite eighteen years old and just a dumb kid (no offense to anyone) but I remembered thinking two things: 1) I hope my folks didn't go to all of this trouble for nothing; and 2) Why is this doctor telling this to me? I can only guess at what his motive was. I had the surgery. I read later that the average life-expectancy for that condition is fifteen years. But the experience, although different from what you are going through, was very frustrating.

I hope you have some answers and some relief soon.

 

[Karlynn]

Stacey,
Same thing happened to me. It was in the hospital right after a cath. The doctor told me I wasn't ready yet for a replacement. I burst into tears right in front of him. I wanted so much to get something done so I could start feeling better. 6 months later it was done, and I did (and do) feel a whole lot better.

Hang in there.

 

[Abbanabba]

Oh Stacey! I had the same thing happen to me last year. I was told that according to all the test results I would need a PVR "soon", definitely within the next 12-18 months. I scheduled my surgery, quit my job, then after some pre-op tests my cardio turns around and tells me that my valve doesn't look bad enough to be causing my symptoms after all and to go home, maybe see him for a check up in a year or two!!!!

As you can fully appreciate, I burst into tears. Not only had I managed to accept that I'd need further surgery (after always having been told I was "fixed" after my OHS in 1976), but I had reached the point where I was looking forward to having it done so I could start feeling "normal" again.

To add insult to injury, the cardio then made the most ridiculous statement that I was obviously depressed since I was "so easily upset" over such a "minor" issue!! He even went further to suggest that my symptoms were probably being caused by my depression/anxiety and I should start a course of anti-depressants which would help me feel better. Can you believe that?!!!

I sought a second opion, but the 2nd cardio told me the first guy was the leading expert in my state and would know more about it than he did, so he didn't want to contradict him. I told him the 1st cardio was contradicting himself enough already and probably didn't need his help with that anyway.

I've now moved interstate and have an appointment with a new cardio this October, who runs a clinic specific to people with my particular problem (congenital heart defect).

Anyway, I'm sorry to hear your surgery has been cancelled. Has there been any further investigation into this other issue? It is SOOOOOO frustrating when you feel like you're bashing your head against a brick wall and no-one is taking you seriously.

Please keep us posted on what happens.

All the best
Anna : )