Asymptomatic & Need AVR !?!?

[steve c]

Hi! I'm 41 years old and have congentital aortic (bicuspid) stenosis. I've never had a symptom in my life and my cardiologist told me that I'm one of those baffeling patients. I was told that either symptoms OR certain echocardiogram results would dictate to me if (and when) surgery was needed. (I understand that Arnold Schwartzenager had the exact type of situation.) Anyway, you never think "the day" will come when you're told surgery is needed. My "day" came yesterday. Suddenly, a zillion things, scenerios and worries are flooding my mind.

Because I feel fine, this is difficult to accept. I was always active, had very few restrictions. I've worked out and played hockey for YEARS. I currently referee inline hockey. I guess all this will change to some degree.

Am I alone? Please respond either here or to: [email protected]

Thanks!

 

[martha]

Hi Steve,

You are not alone and welcome to the site. There are allot of knowledgeable people here who will come along soon. I was born with an bi-cuspid that turned into a stinosis. Had my aortic valve replaced with a homograph on 12-15-00 at the age of 49. Didn't show symptoms for the longest time. My cardiologist wanted to wait a little while longer. I was glad that I had pushed things a long. The surgeon told my mother that the valve was in bad shape. Deffinatly needed a replacement. Looking forward to seeing more posts from you. In the mean time, if I can be of any further help please contact me. [email protected]

 

[BillC]

Welcome..

Welcome..

Hi Steve .. and welcome to our group.

Like Martha said, you are definitely not alone. I'd venture to say that a large percentage of our group started out with a bicuspid valve. For many, this condition is diagnosed in childhood or early adult. I didn't find out about it until after I turned 50. Went in for my annual check-up and my new doctor asked how long I'd had the heart murmur. That led to a fast-paced series of events that included finding a cardio, surgeon, hospital and choosing a valve type. Within 2 weeks I had had my homograph AVR. It's now 15 months later and I feel great. I'm sure you will too.

Even though it's serious stuff and sounds real scary, the worst part is the waiting. The key is to finding the best-of-the-best when it comes to a surgeon. Then making the toughest decision as to tissue or mechanical valve and type.

There are many of us here who have been thru this... so please ask any questions that you might have. Also take a look at our personal stories for more details.

Good Luck with your research and your decisions. Again, welcome.. and stay in touch.

 

[Kevin M]

You've Got Mail

You've Got Mail

I sent you an email last night regarding this. I forgot to add that you should check out the thread called, "Making The Choice" under Heart Talk, where Peter Easton has been researching his AVR options. Overall, I believe this thread is one of the most useful in terms of information and experiences that I've seen in my few months on this forum.
Kev

 

[Bill Hall]

Steve - Welcome to the site. I had mitral regurgitation from rheumatic fever, and had an MVR (repair) and AVR in Jan 2001. They found out my aortic was bicuspid during surgery. Anyway, I did not have symptoms even though my heart was well over threshold for surgery. I really put this off longer than I should have due to lack of symptoms. During my last summer before surgery, I noticed being more tired running while playing softball. Anyway, good luck with your decisions. Make sure you ask questions on this site, as needed.

 

[steve c]

Thanks to all!

I'm scheduled to meet with a surgeon on Friday and am already writing down questions as fast as I think of them.

I'm also somewhat torn because I trust, respect and like my cardiologist ALOT and now am being tempted to get a "second opinion" on surgery. Although I've known myself to be in the "severe" catagory, I believe I'm now "critical". I'm wondering if a "second" will only waste time by delaying surgery. My (gut level) figuring is that, since I know what is imminent, let's just "get it over with". Why delay, and thus dwell upon, what I will have to face sooner or later.

Any thoughts?

Thanks again!

Steve

 

[Gerry]

Hi steve and welcome to the Forum. I am sorry this has happened to you, but like all the rest of us here, it's just the cards we have been dealt in life.

True, it's tough, but once you get your mind sorted out and accept the situation and the way forward, you will come to realise how lucky you really are that there are medical cures for us. 30 years ago, the prognosis was to go away and die. Nowdays, with the aid of modern medicine and technology and skilled surgeons, we can be treated and "cured" and go on living better than normal lives. "Better", because we come to realise the wonderful gift of life that so many people take for granted and abuse and better because we feel we have overcome a great challenge.

Your situation sounds identical to mine and where I was a year ago and the same as so many others here.

My suggestions to you :-

1. Read my story and others in the personal stories section of this website.
2. Follow some of the links from this website and read up on the disease and the options.
3. Ask questions here - the more specific the better.
4. If you feel uneasy or uncomfortable about your doctor's advice (or just need reassurance) , get a second (or third or fourth) opinion - after all it's your life.
5. Gather as much information and understanding as you feel comfortable with and then decide how you wish to proceed - type of valve replacement, where to have the operation and under which surgeon. The latter is the most important decision. Like Bill C said, search out the best.

I would quite happy to correspond with you for any further advice, if you wish. ([email protected])

Good luck

 

[hensylee]

Hey Steve. I have seen your story posted here many, many times and all have found help, answers and information from the wonderful people who reside here and are here just for you. Please ask all your questions, seek every comfort and support as you approach that dreaded day when you take your steps toward the mountain. The family here have all survived with success the very operation that you are facing. They can be your source while you walk along. Welcome God bless

 

[Peter Easton]

Buying time

Buying time

Hi Steve --

Welcome to the family and very best of luck with your investigations -- a genuine slalom that we all seem to navigate, excepting those in such emergency situations that they have to go with the first or most local alternative available.

As concerns the "time to decide" issue, the cardiologists presumably know best, but a second opinion (and sometime a third) seems to me ALWAYS good practice; and tolerance -- no, enthusiasm! -- of a cardiologist or surgeon for that behavior in their patient is arguably one way of assessing their own competence!

For what it's worth, though still experiencing relatively light symptoms, I am reportedly down to 0.61 cm2 of aperture, which -- says my cardiologist -- is only a bare tenth of a square centimeter or so clear of the level inconsistent with further life on this planet. Nonetheless, both he and the local surgeon say I should be fine scheduling the surgery some time in August and don't have to rush into the emergency room. So I am using the remaining time before my own decision deadline in early August to check out alternatives.

Peter

 

[Mara]

To Steve Re AVR

To Steve Re AVR

Steve- I was born with a bicuspid Aortic valve. Up until my surgery my only symptom was fatigue. After the surgery...which was 7/12...the surgeon could not believe that that was my only symptom. The valve was the size of a pencil lead. He thought I was lucky that my heart did not decompress because of the small opening for blood flow on the high pressure side! Wow! Who knew. My cardio saw the changes on echo he was looking fro which prompted surgery.
My advice is don't mess around and second gues the docs. In my case, they knew better than what was told by my lack of symptoms.

Good Luck
-Mara
Ross Procedure 7/12/01! and proud to tell the tale!

 

[Peachy]

My situation is very similar. I have congenital aortic stenosis (bicuspid valve). I have been getting annual checks since I was around 6 when it was picked up. I am now 40 and have never had any symptoms and have always been active. Last year however at my checkup they said that things had deteriorated quite a bit and surgery was mentioned. However I was not experiencing any symptoms and they said things could wait as I would not get any benefit from surgery. I was asked to come back in six months instead of a year and this started to worry me. When I went in February this year they confirmed again that things were deteriorating and had changed since my last visit six months ago. However as I was feeling fine they said to come back in a year but was to get in touch if I felt I need to. Not long after this I started to get pains in my chest and noticed I was breathless when going up stairs. I contacted the hospital and was there this month. They said I am needing a replacement valve and I am now waiting for an appointment to speak to the Surgeon. I have now had to stop all my hillwalking, ski-ing etc. The only problem I have now is to decide whether to go for a mechanical or biological valve. I would prefer the biological as I do not want to be on anti coagulants. (I have posted a thread re this a few weeks ago and got lots of useful replies). Anyway all the best and keep us posted.

 

[Christina]

Hi Steve...

No, you are certainly not alone. I am female, 54 years old, and 53 when I needed surgery. I also had Aortic Congenital stenosis but never knew until last year that there was a problem. I also thought I had very few symptoms other than being tired a lot of the time, but blamed it on menopause.
It all happened so gradual that I really did not notice the problems coming on. I became used to the crummy way I felt.

As far as I can remember back I've had a heart murmur and doctors would comment on it when they listened to my heart. No one ever told me that it would be a good idea to have that murmur thoroughly checked out until last year, when I sought help from a homeopath for menopause issues.
I followed her advise (don't know why. I hate doctors and I avoid them like the plague) and received the absolute shock of my life July 13th 2000. I needed heart surgery soon if I wanted to avoid sudden death. I had the surgery within two weeks, and received a mechanical valve (St.Jude's) because of my age (53)
I also was very active, weightlifting, aerobics, health & fitness for many years.
I am almost one year post-op and am doing okay. Am on Coumadin and that is not a problem other than that it can be difficult to regulate.
My surgeon did not give me a choice in valve, and told me off the bat that his choice for me would be the mechanical. I am not sorry about this, because I did not want to do this again. (Read my story in the old forum personal story section)

Hope this helps you in making your choice..

Christina

 

[steve c]

Hi Mara!

I am grateful for everyone who replied so quickly.

I noticed your posting under "Celebrities" and have three questions: 1) Why was the Ross Procedure recommended (or decided upon)?; 2) What timetable were you given on the possibility of another replacement?; 3) As I've been following Arnold's story, where can I find out more about his journey?

Thanks,
Steve

 

[Mara]

Steve- RP

Steve- RP

Hi Steve-
I chose teh Ross because my Cardio recommended it and so did the surgeon. I am 33, almost 34. I did not want to face a lifetime of Coumadin, especially looking at menopause down the road, but that is a female specific issue (my mom had some troubles with heavy bleeding at menopause etc). In my case the RP was recommended over a tissue valve or mechanical because AS/AI were my only health issues, I am young and pretty active. The surgeon has said he figures no reoperation for 20-25 years. i hope to beat that by a long time. since being told I needed the op i have become involved in nutrional medicine and plan on keeping these valves in top shape. I'd like to get 30 years out of this op. By then the world of valve replacement surgey will be totally different.

I know there are folks on here who swear by their St. jude's and they made the right choice for them. Choosing a valve is between you and you docs...it is a very personal matter. Which ever way you go, know you are not alone. We have all been there and back to tell the tale!

I only heard recently about Arnold getting the RP, someone posted an article about him under the celebrity valvereplacements topic. My guess is Arnold's RP failed because of steroid use when he was body building.

-Mara