Lots of Questions

[sandy]

Hi Everybody...I'm a new member and learning how this works... Iwas diagnosed w/ a stenosis about 2 yrs. ago....poss. congenital...don't know..I have no sym. as far as i can tell, but am getting some thickening of heart wall so my cardio thinks I should start talking to surgeons. It is so wierd to be thinking open heart sur. when I feel as well as I do ( I school 2 horses everyday!) I would love to do a minimal invasive surgury...anyone out there that can give me some info on it? Thanks in advance. Sandy

 

[Georgia]

Sandy, welcome. Since it's the weekend it's likely that it'll take a while before the usual contingent stop by.

I suggest you use the search function on this site for "minimally invasive" - you'll get a lot of hits. Quite a few folks here have had such surgery. I imagine you'll be surprised at the amount of discussion on this topic.

I'll bet you're pretty shocked - it's awful to contemplate this. But you're lucky you have a doc who's watching closely and is being careful about damage to your heart. It's VERY important to avoid enlargement. Cardiologists tend to be conservative about when surgery should be performed and at times leave it until too late.

Hang in there. We'll be happy to answer questions and help you get through this very difficult time.

 

[sandy]

Thanks Georgia

Thanks Georgia

It really helps to know ther are folks out there who will listen and offer support THANKS Sandy

 

[geebee]

Sandy,
Can't help with the minimally invasive surgery but I did want to welcome you. I am sure you will find the answers here. It is very surreal to find out you need surgery but be happy this condition is something so fixable.

 

[joanne6]

Welcome Sandy

Welcome Sandy

Sounds like you are coping pretty well at this point. I had a minimally invasive mitral valve repair in August. Did not know they could do that with stenotic valvies. You have come to the right place. No where else could you get the support you will get here from people who have been through OHS.
What do you want to know about minimally invasive. There are a least 2 types. One is ministernotomy, meaning it is a midchest with the ribs broken and rewired. The other is a small incision under the R breast.

 

[dcpickle]

Hi Sandy
Hello from Cherokee County, GA.
I also can't help with the min. invasive surgery, but please stick around and ask questions. There are people here who can give pretty good answers to almost any question you might have.

I know what you mean about feeling weird to talk about surgery. By the time I finally had surgery, though, I was feeling definite, undeniable symptoms. Some people have surgery with no symptoms and the surgeon reports after surgery that the valve was in real bad shape. Others think they have no symptoms, but realize after surgery that they feel much better than before. So, don't use symptoms as your sole indicator for surgery.

David

 

[mtkayak]

Welcome!

Welcome!

Hi Sandy,

I asked my Card about minimal invasive and he said it wasn't an option for me. My heart (right vetricle) was enlarged to the point were they thought it might could close be touching the sternum. It wasn't as enlarged as they first thought. In fact, they deflated my heart before they opened me up. (Maybe this is routine I don't know) just to make sure they didn't accident cut into the heart. In otherwords, I'm pretty sure it depends on the size of the heart at the time of operation as to what procedure they use. My right ventricle was thought to be twice it's size. The surgeon said he might have to cut it and sew it back to make it more narrow. That was not the case thank god. It wasn't as big as they thought.

I hope I explained his correctly. I was on pain med at the time I forget little details I was told in the hopital My mom sometimes has to remind me what was said.

 

[Marguerite53]

Hi Sandy. Welcome to this wonderful community. I am 52, 6 weeks out from aortic valve replacement due to very severe stenosis. My valve was a birth defect. I did notice symptoms about 3 years ago which got steadily worse but never debilitating. I was very ready to get the surgery over with, and could not have done it without all the amazing support I got here.

So, use us. We are good at helping formulate questions for your cardio and surgeon. We are not medical professionals, as you may realize, so always consult your doctors for the real answers.

Can't help you with the minimally invasive. I will say that I am amazed that I came through this with only a 5 inch cut, full sternotomy and the healing/recovery (while annoying) period has been far less troublesome than I imagined. For me, I was surprised to find that my cut was put together just with glue. And my sternum was "wired" back together with dacron thread...not surgical wire. I assume these are newer trends and I mention them only from my own postive experience with them.

Good luck and keep asking quesitons!

Marguerite

 

[Phyllis]

Welcome, Sandy. Dick had minimally invasive- mini-sternotomy and his scar is about 3-4 inches. You can have this procedrure as long as the cat shows that no bypass is needed and most important if your surgeon is very experienced in this procedure. There is a good video on the Brigham website that shows the whole operation by Dick's surgeon, Dr. Cohn. http://www.or-live.com/BrighamandWomens/1127/ Wishing you the best.

 

[sandy]

Thanks Phyllis for the info on min. invasive...I meet w/ a surgeon at Emory University Hosp. the 14th of this monthand will find out if I am a poss. candidiate for it and also find out if he does it or just who would be the best doc for it .... Thanks again...this webb site is a blessing!! Sandy

 

[EVELYN]

Hi Sandy and WELCOME!!!

Great place, wonderful people and lots of knowledge here. I'm Evelyn whose husband, Tyce, had AVR....well 6/26/06 will be 4 years. I can tell you that we talked with our surgeon about minimally invasive and he wasn't for it in Tyce's case....his philosophy was "If I have to get in there in a hurry, I want plenty of room." So....Tyce had the AVr with a mechanical valve.

There are many people here who have had it done minimally, though, and I'm sure they'll be on to help you out.

You have found a gem in this website.....the people are wonderful. I've been around for 4 years and it's the best.

Evelyn

 

[Superbob]

Hi Sandy,

Check out all the options. I had severe aortic root enlargement and valve leakage (even though I had few symptoms and was physically active) and so minimally invasive wasn't an option for me. Had the heavy-duty variety. But I am doing well now. Maybe minimally invasive will take care of your problems. If not, OHS is not as daunting as it seems when you are first confronted with the prospect.

Welcome to vr.com! Hope all goes well for you.

 

[Kate]

Hi Sandy,
I had minimally invasive surgery for my aortic replacement and was very pleased with it - my scar is quite small (about 4 inches). However, as my cardiologist pointed out prior to surgery, this is the primary benefit. My stay in the hospital was a pretty standard 5 days and I was not allowed to drive or lift any sooner than someone having traditional surgery. So, go for it if your Dr can do it, but don't expect miracles! Kate

 

[sandy]

Thanks Kate for the info. ..I am meeting w/ a surgeon on the 14th of this month to discuss options. Maybe I will get lucky and get the ok for min. invasive! This website is a blessing! Sandy

 

[sandy]

Thanks, Marguerite 53

Thanks, Marguerite 53

Thanks you for your thoughts. I have been recently told I need to start looking at surgury possibilities in the near future.My left ventrical wall is starting to thicken abit and i am beginning to realize that I have a fairly conservative cardio. I don't have any syms,that I "know" about but I don't want to damage my heart either. I see that you did a tissue valve and I believe I will do that also. I have a very physical life style and don't want to be on meds if i can avoid it. How did you come to that decision if I may ask? I am almost 61 and have always been very healthy,so all of this seems like a bad dream. However, I am grateful I can get "fixed" and I am soooo glad I can talk w/ you guys about all of this. It really helps calm me down..Thanks again Sandy

 

[Der Biermeister]

Sandy -- I'm 63 and made the decision for tissue over the mechanical because of:

Age ... the older you are, the longer the tissue valve will last. If the tissue lasts close to 20 years, then who knows what miracles they will be doing way out that far.

My lifestyle -- I ride motorcycles and also race sailboats. I don't ever want to take the chance on severe bleeding cause by heavy blood thinners.

 

[Marguerite53]

Sandy. Choosing tissue had nothing to do with an active lifestyle. You can expect to live a wonderful, active life with a mechanical valve. Do not be misled about that. We have scads of very very active valvers with mechanical valves.

I had many reasons for choosing tissue. It all boils down to educating yourself really well about your options....thinking about who you are, your habits, your tolerance for things, etc.. My ideas may sound silly to those for whom having a second surgery (down the road) is not desirable or optional. For me, the thought of another surgery in 10 to 20 years is okay. I came through this one beautifully and I (foolishly and arrogantly) expected to. I am not a disciplined person. To have to maintain an INR would be hell for me. I can hardly remember if I fed the dog every day......I'm just no good at that kind of thing. I'm very fair, have already had suspicious things taken off my face (skin cancer wannabes) and know that there might be Moh's procedures down the road for me. Balancing coumadin with that did not appeal to me. I'm very sound sensitive and was not thrilled with the prospect of the ticking. I have faith in these new tissue valves. I'm borderline age group (you are much closer to an acceptable age group for choosing tissue) and my surgeon highly recommended this valve for me. I don't need to live forever, either (another arrogant thing to say). Truly, it was kind of a gut decision, in the end. It just sounded best for the me that I know.

But you have to make your own decision for your lifestyle. Therefore, you have to understand how these different valves will affect your lifestyle. Please look through this forum and gather some new questions. It does not sound like you have a thorough enough understanding of things. Many of us can point you to places of great information.

Marguerite

 

[sandy]

Thanks, Marguerite 53

Thanks, Marguerite 53

Thoughful info for me...I will begin my study. Thanks , Sandy

 

[sandy]

Met With A Surgeon

Met With A Surgeon

Hi everybody, as scheduled, I met with a Dr Robert Guyton , a surgeon who is affiliated with Emory Hospital in Atlanta, Ga. We live close by and have always heard good things about Emory. We were impressed with Dr. Guyton as he does at least 100 of these surgeries(AVRs and Cor. bypasses) a year. Anyone out there who knows him and/or was at Emory for surgery? I will be having my AV replaced and have chosen to do a tissue valve but still am in the search mode for surgeon/hospital(leaning towards Emory) I need to make a decision soon. Thanks in advance for any input. Sandy