Confused About Surgery

[jkn2kids]

I'm a 45 yr old male with a 4.8 cm ascending aortic aneurysm and a BAV.My surgeon has me in a waiting mode.I have known of the aneurysm and BAV for 18 months.The stress is killing me!!! My surgeon wants to wait until the aneurysm reaches 5 cm and/or the valve opening goes below 1.0 before surgery.I'm looking for some opinions about what I should do.I'm not sure about the type of valve I should get.I don't really want to be on coumadin for life.Also,I have a wife and a 3 yr old daughter and 11 month old son to think about.I understand the surgeons point of view but he is not living with this on a day to day basis.I appreciate any feedback on this.


Thank you!!!!

 

[Ross]

They like to wait till 5. Why is beyond me, because they tried it with me and mine ruptured at about 4.7-4.8. I see no point in waiting. Perhaps get a second opinion.

Everyday we hear new people come in and say they don't want to be on Coumadin. They have heard horror story after horror story and most all of it is untrue. There is a very good piece written on valve selection by Tobagotwo in this thread:

http://www.valvereplacement.com/forums/showthread.php?t=12982&page=1&pp=20

Last post on that page.

I'm for anything that will keep you from having repeated surgeries, which means mechanical and even then, there are no guarantees. None the less, read around in valve selection and take a look at Al Lodwicks site on Coumadin at www.warfarinfo.com Educate yourself as much as possible about the choices involved and then make an informed decision.

 

[JimL]

The worst part of this surgery is the wait; I'm very glad that my wait was only three days. Of course, that was the time in between when I knew for sure I needed surgery and when the surgery was done. I needed the surgery much sooner.
There was a time when my valve opening was 1 cm2. They decided I needed surgery when they did the angiogram and found the valve opening was 0.1. When the surgery was actually done, the surgeon told my wife the valve opening was 0 -- I think that means I had seconds left.
These are not meant to be horror stories. I went down fast in the last months before surgery; I was 46. There is also a difference many have reported between cardiologists and surgeons. Cardiologists tend to wait for the surgery, while surgeons want to get it done. Are you talking to a cardiologist or a surgeon?
If you will need the surgery done, isn't it better to have it done when you're still relatively healthy? There is, as I know from my own experience, a long way a person can go downhill before surgery is done. I couldn't walk across a room without being short of breath before surgery.

 

[hensylee]

most new members show up as a basketful of nerves and stress. A perfectly normal response to the new set of circumstances you find yourself in. Welcome to the place where you can get some of it alleviated. We've got many members who are here to help you find good decisions - or just to offer kind words. All of us, or a loved one, have been through this life changing set of circumstances, just like you - that's why we're here now. Read on, the rest are on their way here to this thread.

Welcome to VR -

 

[Gemma]

Hello and welcome

I agree with Ross - Tobagotwo's post on that link is an excellent summing up of the pros and cons of mechanical and tissue valves, without getting emotional about either type. Something not all of us manage to do all the time .

My boyfriend Jim got a mechanical valve in December 2003 - he's a precision engineer (working with machinery) and rides motorbikes on and off road, and also mountain bikes. And he's rather clumsy - forever scraping or bumping himself or something or other. He chose the mechanical valve (hopefully a lifetime fix) along with the daily warfarin-taking over the knowledge that with a tissue valve he would be guaranteed a further surgery in the future. Others feel that they would prefer repeat surgeries over taking warfarin daily for the rest of their life(but of course there are some who take this route and still end up on warfarin for other reasons such as atrial fibrillation). In terms of risk, neither is a "better" choice, it's just a question of which you think you can live with best.

If you have any specific questions about either type of valve, or anything else, after reading up a bit more, ask away and someone will be here with an answer.

Gemma.

 

[epstns]

While I can't add much to the discussion about your aneurism, I can attest to the fact that the waiting can be frustrating. I'm a bit older than you are (at 57) and have known that I have moderate to severe aortic stenosis for about 3 years now. I was first diagnosed when, during a routine physical, the doc asked ". . . How long have you had this heart murmur?" Since then I have been in the watchful waiting mode, with annual echo's and office consults in between. My aortic valve opening is currently just larger than 1.0 sq cm, but the cardio's seem to be in no hurry to operate. This is partly their training, and partly the fact that I presently show no "real" symptoms. Sure, I have less energy than I think I should, but I haven't had any of the "cardinal" symptoms of fainting, shortness of breath or chest pain -- so they continue to prescribe watching it.

One thing I can predict for you is that your surgeon will most likely not even try to repair your natural valve. Stenotic aortic valves don't seem to lend themselves to rapair, at least not in adult patients. I mention this so that you can do as most of us do, and start reading all the message threads on this board that discuss valve selection. You will first be overwhelmed, then will probably have some questions, then you will come to a tentative choice for yourself. That is all it takes to start the process of getting ready for valve replacement. The things you learn will lead you down the path of learning the rest of whatever it takes to put your mind at ease -- and I would bet that the answers to your questions are here at VR.com.

All that said, welcome to The Waiting Room -- the virtual room in which many of us wait our turns for valve replacement surgery. Visit often, the folks here are wonderful!

 

[Tom F.]

I agree with Ross, waiting until you are at 5.0 can sometimes backfire. I would seek a second opinion. Also, I would look into the Ross Procedure as an alternative to a mechanical valve.

 

[inlaguna]

I waited for 40 years as I found out at 18 months regarding the BAV. It is difficult to judge when to go, but you make the ultimate decision with help from your surgeon and cardio.

My valve was about .7 cm and my anuerysm was 4.5 at the time of surgery (even with that my surgeon debated on doing anything with it.....he did repair it)

I was experiencing some symptoms and who knows how quickly it would have escalated. I do know that about three years prior I was about 1.2 cm2 and was under monitoring mode.

The wait and the decision are both anxiety escalating so read the posts on this site to keep yourself well informed.

The good news is it when sugery does happen it goes by fairly quickly for most ( the younger the better) and you'll be looking back a year out feeling much better than going in.

Dan

 

[jkn2kids]

Thank you all so much for taking the time to share your experiences and knowledge with us. I'm Kevin's wife, Janene, and this whole diagnosis has really added a lot of stress to our lives.
My husband doesn't have the symptoms that our surgeon is looking for, I guess. I've seen a real difference in him, though. He's fatigued all the time and has had a couple of instances of profuse sweating while engaged in activities that don't warrant even breaking a sweat (one incident ended in a visit to the hospital because he was dehydrated...this is a man who drinks at least 80 ounces of water a day). I know the stress could be having an impact on his energy level, as well.
We feel lost...the cardiologist relies on the surgeon's opinion about waiting until it reaches 5 cm. But, there are other factors. His mother died of a heart attack at 54 (supposedly, no autopsy was done). My husband is a commercial contractor (self-employed), so spring and summer are crazy. We have 2 small children (Ryan will be 1 on October 25th, Alexandra turns 4 in December). We're in Maryland. His family lives in Va. Mine's in Pa. and will help to a degree, but...well, how much, I couldn't say. (I could use some advice on how to manage this all, as well...after surgery, I mean. How should I prepare to be the best support for him possible...while mothering small children?).
I'm also concerned about being fully informed. My husband was working out of town, lugging 80-100 lb paint buckets, and pushing a 500 lb striping machine up and down ramps into a van, when I happened to read an article about weight lifting. It explained that we exhale during a lift, because the strain spikes our blood pressure and the breathing helps alleviate it. I told this to my husband and said, "Do you think this lifting is really okay with you?"
He called the cardiologist the next day and he said, "Oh, no...You really shouldn't lift over 30 lbs." !! Why didn't he tell us this before?
This was a huge wake up call for us for a couple of reasons. We realized we really needed to take a more active role in all of this, and it really hit us how serious this is (that probably sounds stupid...I think a little denial was at work here), and what we'd "lost." He can no longer pick up our daughter, or play with her in the wild ways Daddies are known for...Any little pain or tightness and we're both tense. I'm so afraid (but I try not to let him know how afraid). I remember after we first found out, I'd watch him sleep at night and think, "Please, please don't take him from me." I watch him with the kids, and it kills me to think that if something happens now, if we lose him, they wouldn't really remember they're wonderful Daddy. Our daughter worships him
and our son looks just like him. I don't want to let him know how this eats me alive. I find myself checking on him when he sleeps late... It must sound sick and morbid.
I apologize for writing so much. We are so happy we found this site...and grateful, very grateful. He needs all the support he can get from people who really understand.
Thank you all so much,
Janene

 

[BAV Pt's daughter]

They like to wait till 5. Why is beyond me, because they tried it with me and mine ruptured at about 4.7-4.8. I see no point in waiting. Perhaps get a second opinion.

I know that Dr. Raissi at Cedars-Sinai in Los Angeles (he supposedly "perfected" the routine now used in the Bentall procedure) recommends surgery at 4.7-4.8 WITHOUT other complications. Also need to consider how controlled the BP is. Check out these websites also:

http://www.bicuspidfoundation.com/

http://www.csmc.edu/3885.html (and the many links on this one)

Each doc seems to vary with their recommendation, but stress is a big factor too... it can raise your BP significantly, which can be a major risk factor. Definately get another opinion, take reports and films (echo, CT, etc) with you.

 

[KAJ]

Kevin and Janene,

I can completely identify with you in several respects.
1. I found out about 4 years ago about my BAV and ascending aortic aneurysm. I am now 47. The cardiologist was really not that concerned about the aneurysm. He did keep an eye on it. I am not sure what it measured at that time.
2. I also have young children but not quite as young as yours. I have 13 year old son, a 10 year old daughter and 6 year old twins (boy and girl).
3. I did not want to be on coumadin for the rest of my life.
4. The not knowing when and if surgery would occur was very stressful.
Here is what happened. I have had check ups for every 6 months since that time. A year ago, my cardiologist noted my valve getting worse faster than he expected. I also found I starting to get fatigued. Other that, I really did not have any symptoms. He also started to restrict my activities.
In Jan. of this year, I started to have major heartburn. My wife wanted me to play it safe and go the ER. I was immediately admitted into the hospital so they could check on my heart again. I was diagosed with severe heartburn. However, the echo showed the valve had gotten even worse. A heart cath the next day cofiirmed the echo. My valve area decreased to about a .04. Several days later, the aneurysm was measured. It was 4.5 cm.
My cardiologist sent me to the University of Alabama - Birmingham (UAB).
I wanted a tissue valve, but to make a long story short, my surgeon said in my case it would not be a good idea. I now have a mechancial valve and of course on coumadin. It honestly has not been the monster I thougth it would be.

The members of this site, and a local friend who has mechanical valve have all been extremely supportative and helpful. Please do not hesitate to ask questions from me or anyone else. If you like, you can e-mail or PM me at any time.
We are here for you.

Take Care and God Bless,
Karl

 

[jkn2kids]

Karl (KAJ)-thank you for your response!!! I'm also worried about the ticking sound of a mechanical valve.What has been your experience with the ticking? Does it bother you at all or do you get used to the ticking?

Kevin

 

[Karlynn]

You've already found out that sometime you don't get all the important information. The weigh limit issue was a BIG piece to leave out. Question, question, question. And then ask again!

Valve choice is tricky at 45. If you go tissue - you know you'll have at least one more surgery ahead. Mechanical, while it doesn't guarantee no more surgeries, the chances are much slimmer. But then you have the Coumadin issue. I've had my mechanical mitral valve for 14 years (as of the 24th of this month). My children were 5 and 7 when it was installed. I would have been looking at another OHS (open heart surgery) to replace a tissue valve just about the time my kids were graduating from high school and starting college. I am very glad to have not had to put up with a deteriorating valve and surgery during the busiest time of my parenting. Swim meets, debate tournaments, track meets etc, kept me running non-stop. Coumadin has not been a huge issue for me. It is a manageable drug and, in my opinion, we have it much easier than diabetics when it comes to the administration of it. I like to tell people that instead of having another OHS to pay for, we went to Europe twice instead.

But your decision needs to be weighed in regards to your own life. No choice is a bad one because it allows you to go on living.

Welcome and best wishes to both of you!

 

[KAJ]

Karl (KAJ)-thank you for your response!!! I'm also worried about the ticking sound of a mechanical valve.What has been your experience with the ticking? Does it bother you at all or do you get used to the ticking?

Kevin

Kevin,

Yes, I do hear the ticking the sound but not all the time. I have had mine since March and am just now starting to get use to it. I can no longer sleep on my left side because that is when I really hear it. Sometimes I hear it while sleeping on my right side but not as bad. My wife can also hear it at times.
The first night I came home from the hospital I was still in alot of pain so I slept very littlle. I heard this ticking sound and I honestly thought it was my watch. A couple of weeks later it finally dawned on me it was my valve.
I am not sure if body build has anything to do with being able to hear it, (I am tall and some what thin (180 lbs).

The bright side is if I am mad at someone and I can hear the valve, I can say "you are really starting to tick me off" and really mean it (just kidding of course). I also tell myself that hearing it makes me realize how fortunate and blessed I really am because without the valve, I would not be with my family.

Karl

 

[tobagotwo]

It's very common for people to deny even to themselves that they are symptomatic. Angina, for example comes in many forms, most of which do not result in someone on their knees clutching their left arm or chest. For women, it is commonly jaw or neck pain. For some people, angina feels like breathing in cold air, or even just a tightness in the throat (those were me).

The fatigue happens slowly, over time, and we attribute it to letting ourselves get out of shape, or not getting enough sleep, or just getting older. After Kevin has the surgery, he will realize how cheated he has been by this slow progression.

Aneurisms tend to sit idly for some period of time, but when they start to move again, they do it quickly. If he's been sitting on 4.8 for 18 months, I would say that's long enough, he's had enough risk-taking to match a flawed absolute.

I suggest that Kevin should present himself as symptomatic (he is, you know). And if that doesn't change the picture, he should explain to his cardiologist that he feels he has risked a dissection for long enough, and that he feels he needs to get a second opinon about having the surgery sooner.

I also suggest he ask both surgeons to consider whether his aortic root might need to be stabilized during the procedure as well. Just a thought.

He shouldn't let the doctor steer him to a like-minded peer for that second look, either. It's his life and health, not the doctor's protocol that is in the balance.

Waiting is hard. I'm not a medical professional, and I don't suggest you do this just to avoid waiting, but it sounds like he is living a relatively hazardous existence, with miserable quality of life. And it might work out that having controlled surgery, even a little early, makes more sense than emergency surgery done by a stranger called in by the ER.

Best wishes,

 

[CCRN]

Do you need another surgical opinion?

Do you need another surgical opinion?

Hi

Ask your surgeon how your ascending aorta compares to your descending. My ascending aortic aneurysm was only 4.5 BUT it was 3X the size of my desending. It's a relative thing. With BAVD sometimes the ascending aorta is more of an urgent situation than the valve. Maybe you just need another surgeon?

 

[LLJ]

Hello Kevin and Janene. Welcome to VR.com! I always find it interesting why various cardiologist and surgeons chose to wait. I have known about my problem since birth and when velocity of blood across the valve and valve size reached a certain level, I knew I would have to have surgery. When given the option of waiting 6 more months to "see how things go" I said "why?" We didn't even know about the anneurysm I had until they had my chest open.
As far as valve choice goes: whatever any of us chose we are all very happy! Honestly, it's like "less filling,great taste" Pick what's right for your lifestyle. You can't go wrong. (Not that we don't defend of valve choices fervently!)
After surgery: Let people help you. Friends, neighbors and family. Your husband will be in pain and sleep alot, but he'll be able to walk around, dress and shower himself. My daughters girlscout troop moms took turns making dinner every night for us. I was so touched!
Find a great hospital and a surgeon you really like who will talk to you. I have said this before,as I work in hospitals and healthcare. CARDIAC SURGERY IS BIG BUCKS! They want you to work with them. Insurance reimburses cardiac dollars very well to these places. Make sure you are happy. The surgeon should be able to happily explain everything to you. You should be comfortable asking questions. IT IS YOUR RIGHT. You're in an area of big hospitals find a nice,shiny, up to the minute one who will help you.
Mortality is very low in these surgeries. Educate yourself and ask questions
Good luck
VR.com has some of the greatest people on the planet. I say that as a healthcare professional and a heart patient.
Laura

 

[ALCapshaw2]

Welcome aboard JKN !

You sound like you are ready to get FIXED and get on with your life. Given your symptoms, concerns, and the seasonal nature of your business this fall / winter sounds like the ideal time to SOLVE your heart disease issues.

You are already looking at the valve options which is good. You also need to know that BAV and Aortic Aneurisms often go together. It is my understanding that this 'can' be due to a tissue disorder. It would be good to find a surgeon who has LOTS of experience with BAV and Aneurisms (and the type of valve you prefer). You should also decide on a second valve choice, just in case there is an unknown reason that the first in not a viable solution once they open you up.

I see NO benefit to waiting. You already KNOW you have TWO issues that can ONLY be fixed by surgery. We have an expression on VR.com that may apply here: "The Worse it gets, the Faster it gets Worse". Valve Replacement Surgery has a VERY HIGH Success Rate (98%) for first time surgeries in patients under age 60 who are in otherwise good health. Waiting only increases the chances of your heart condition getting worse so I would recommend interviewing more surgeons until you find one who seems to understand your condition and feels confident that he can fix you up in a timely manner.

FWIW, I wanted the Bovine Pericardial Tissue Valve but because of radiation damage to my heart, I was given a St. Jude Mechanical valve instead. Day to day living with Coumadin has not been a problem for me. I can sometimes hear the ticking (usually when I have a pounding heartbeat), but it does NOT bother me, and most of the time I don't even hear it.

The NEW (third generation) mechanical valves offer some interesting features (lower turbulence, less likely to cause clot formation) so you may want to look at the On-X and ATS valves. The St. Jude Mechanical is the Gold Standard in terms of longevity with a long and successful track record.

Keep doing your homework and interviewing surgeons. After a while, you will know what / who feels like the 'best fit' for you.

Good Luck and keep us posted. We're here whenever you need us for support or more information.

'AL Capshaw'

 

[jkn2kids]

Thank you all so much for your responses. As my husband and I read them, we are amazed that we've received more information on this website in the last week, than we have from his cardiologist and surgeon in the last 18 months.
We've never even considered comparing the ascending to the descending. Good idea. My husband had another MRI last week and it still shows 4.8. His surgeon says, "Well, it may have been this size for years, and nothing's happened." That logic doesn't sit well with us.
As far as support, I was really upset at his sister's reaction to Kevin's need to question his doctors and do his own research. She said, "He must be driving you crazy...He's not handling this well."!!!! I went on to calmly correct her and she compared his upcoming surgery to gall bladder removall! Needless to say, my husband feels hurt by this insensitivity. I try to tell him and myself that this is her way of coping. I know she loves him, but I have trouble with the cavalier reaction to it all. His father doesn't even mention it at all when we visit. I find it so strange. I guess we all handle these things differently, but he really needs the support, as you know.
I cannot tell you what a God send this site has been for us. We truly enjoy reading about all of you: your experiences and advice. What a great bunch of personalities, too!
Lotta heart
Janene

 

[ALCapshaw2]

As you've already noticed Janene, people who have not 'Been There, Done That' just DON'T GET IT.

That's the real value of VR.com, everybody here has Been There and Does GET IT. We're glad you found us!

'AL Capshaw'