When to operate...?

[Karlynn]

Lyn, you're so right and I thought about that after adding my post. Children are very different. I should clarify that my post wasn't addressing children.

Where adults with valve disease are usually looking for a one fix or one plan solution, I've learned from our heart moms here that with children it's more about finding a course of treatment with most likely more than a few steps involved. You're dealing with the decisions to get your child to adulthood with as healthy a heart as possible, and that isn't necessarily the same procedures or game plan an adult dealing with it for the first time would choose.

 

[marilyn]

surgery?

surgery?

I have been reading everyones post, and one post said that if you have symptoms basically it is bad. I see a surgeon Thursday at The Mayo Clinic in Jacksonville, Florida. A cardiologist here ask me to see him. I recently moved here. I was told in VA to have surgery. I have aortic stenosis and 5 blocked arteries. The valve is 0.9/0.8. That was written on the test. I was told they think that the valve is playing off the blockages. It maybe the other way around. My blockages are 70% except for one branch off the LAD that can't be stented because of where it sits. It has a little more blockage. I was told to do the operation because I am good health also and the dangers of symptoms. My symptoms have gotten worse in the last 8 months. They are different at times. I am having a little problem with this because if the symptoms are the arteries I hate to jump into surgery. I am confused about symptoms anyway. I guess I feel that the more time I have before doing surgery, the better.

 

[marilyn]

ALCapshaw2

ALCapshaw2

You wrote that if you wait for the symptoms the damage has been done. I go for surgery next week for the aortic valve and 5 blocked arteries. I do have symptoms, but he mentioned the valves add problems to the valve too. When I saw him he told me that I could drop dead at any minute. My valve is 0.9/0.8. Are the symptoms the reason he is so concerned? He is working me in as an emergency case.

 

[Lynlw]

You wrote that if you wait for the symptoms the damage has been done. I go for surgery next week for the aortic valve and 5 blocked arteries. I do have symptoms, but he mentioned the valves add problems to the valve too. When I saw him he told me that I could drop dead at any minute. My valve is 0.9/0.8. Are the symptoms the reason he is so concerned? He is working me in as an emergency case.

marilyn, why don't you post this as it's own thread in the presurgery forum, it might get more attention that way , lyn

 

[ALCapshaw2]

(AL Capshaw) You wrote that if you wait for the symptoms the damage has been done. I go for surgery next week for the aortic valve and 5 blocked arteries. I do have symptoms, but he mentioned the valves add problems to the valve too. When I saw him he told me that I could drop dead at any minute. My valve is 0.9/0.8. Are the symptoms the reason he is so concerned? He is working me in as an emergency case.

I assume you meant to say that the arteries add problems to the valve too.

I'm really not qualified to answer your questions. Ask your Surgeon for the best explanation.

'Usually', 70% blockages are treated with angioplasty and possibly a stent, BUT, if you have too many or they are in critical places, they may choose to do ByPass Surgery instead.

SO, that may be a factor in why your surgeon wants to get in there NOW. That can be a GOOD thing. Once the bypasses are in place, the *immediate* problem (with the blockages) is FIXED. You WILL have to watch your diet and exercise to maintain good arterial health.

How the valves react to fixing the artery problem is something the surgeon will have to determine once he is 'in there'.

In my (non-professional) opinion, it is ALWAYS (well almost always anyway) better to FIX the problem before it gets worse, and waiting around for the symptoms to get worse means that the DAMAGE is worse, so YES, I would agree that the SOONER you have surgery, the BETTER the prospects for a GOOD outcome.

I've been through both Bypass and Valve Replacement Surgery (separately) and there is NO DOUBT in my mind, that had I NOT gone when I did that I would not be here today.

Bottom Line: Start thinking about all the things you want to do with the Rest of you Life and how this surgery is going to make that all possible.

Best wishes!

'AL Capshaw'

 

[mtkayak]

My situation is a little different. I'm the medical oddity here with Epsteins Anomoly. I think I heard a statistic like less than 1% of people with heart conditions have Epsteins. In any case, I was asymptomatic but I had a severe leak that needed attention in less than 6 months (as I was told). Basically, I had 50% of the flow going forward and 50% going backwards. I was in no danger of any annuersyms but still.. I opted to have the surgery as soon as possible. The Dr. , of course, was totally happy with that, and highly recommended since I was in such good shape. I scehduled the surgery for 6 weeks out from that date. I continued to walk and light jog everyday at least for 2 or 3 miles, I was in great shape going into the surgery and great shape in recovery. I highly recommend at least walking an hour a day.

For that six weeks leading up to surgery all I could think about was the surgery, it consumed my every thought. That's one of the reasons I opted for a mechanical valve. I couldn't see living my life thinking about when my next surgery would be and having to plan my life around it. I'm not a hypocondriac when it comes to my health either. I feel much better that it is behind me and I can get on with my life. Hopefully, I will have no complications with the valve, Coumadin hasn't been a problem. I'm defintely for early intervention.

 

[delvalle6]

About that second opinion-- apparently my insurance decided my sone doesn't need a second opinion and has rejected the request that the pediatrician made. I guess this is going to turn into a battle along with an emotional roller coaster. Insurance companies should be liable for preventing proper treatment. I complained that the doctor wasn't getting back to me, so he called me and had a major attitude. I will not take my son back to see him. I guess it is time to research my options. I've been researching my son's condition...after really pushing the doctor- and asking these specific things point blank (that I learned here and from my own research) He has a bicuspid valve- the valve is stenotic, his aorta is enlarged(don't know how much, MD wouldn't tell me) an ascending aorta, Aortic valve insufficiency and ventricular enlargement. Apparently, the enlargement is significant, but the MD doesn't think its "any big deal"(yeah, if I could have reached him when he said that). First, this dr said my son needs surgery in 1-5years, now he said my son may never have surgery(there was no additional visit or tests between his changing his mind) He also said to bring my son back in 8 months but wrote in the chart to come back in a year, then when reviewing his notes tried to tell me he never said eight months(thank goodness I wasn't there alone). So- now that I've vented, no, I haven't gotten the second opinion yet. But thanks!

 

[charly]

EXCELLENT information

EXCELLENT information

It might be helpful to mention something that can be a particular risk for those who have already had a valve replacement and now have an aneurysm. One thing that I would want to know is whether or not my aortic aneurysm was close to my sternum. Sometimes it is, and there will also be scar tissue from the previous surgery. If it is, the surgeon needs to know how to open the chest carefully without cutting into the aneurysm. If the aorta is cut while opening the chest, that would be an emergency right in surgery. There is no need for this to happen, because experienced eyes will see this from the CT or MRI pictures and be prepared before the surgery begins. There should be no surprises about something like this. This is where specialized aortic expertise can make all the difference.

This is one reason I would want my situation evaulated by someone who specializes in the aorta and has successfully identified and dealt with the most complex cases.

Some of you may be familiar with Rachel's experience. If she had not gone to an aortic expert for her redo, she would not be with us today. The judgment and the hands that perform the surgery do make all the difference.

Best wishes,
Arlyss

Thank you so much for sharing this important information. - Charly

 

[jonesie]

My advise to you is don't wait. A little over two months ago, it was discovered that I had BAV. I then had a CT scan that found an aortic aneurysm that was 4.9 cm. Because of my small body size I was referred directly to a surgeon. He recommended that I have surgery within the next 6 months. I decided I couldn't wait that long and scheduled my surgery for 3 weeks later. He told me that it was a smart decision. When they opened me up during surgery, the surgeon said my heart was a lot worse than they had expected. After the surgery, I was told that I was very lucky that I had not waited because if I had, I might not have been around as long as I expected. This was a very scary thing to hear at only 24 years old.

End of the story? I am now exactly 6 weeks post op today! I am feeling great and have a new outlook on life. Every person?s situation is different when deciding on surgery, but my opinion is DON?T WAIT. The risk of death from surgery is a lot less than risk of death from rupture or dissection. If I had waited, who knows what would have happened to me. I look at it this way ? I have no control over the heart condition that I was born with, but I do have control over the heart condition I have to live with. Do what feels right for you, and best of luck with everything!

KJ

 

[Granbonny]

I was lucky that they found my Aneurysm (5.0)at St. Joseph's in Atlanta.. surgery 3 days later..Now, at 4 years..5 months later..all is well...Not so for my wonderful B/I/l..sister e-mailed me today..he would have been age 67 today. Died at age 51 from a dissection of his Aortic... Local hospital thought it was a bad case of heartburn and waited several hours to transport him to a larger hospital. Had the operation..never awoke. Died 24 hours later. Left 2 young boys for my sister to raise alone. ............mtkayak..You think like me..so glad the surgeon told my family..I am putting a mechanical valve in her..for she/family never want to have to go thru this operation again....It takes a full year to feel yourself again..and who needs to think about that? Life is great..with 2 new Grandchildren from Russia..that I enjoy playing with..Ages 3/5.....Coumadin..No problem..Bonnie