Bicuspid Valve and Ascending Aortic Aneurysm

[vasandhan]

I am 33 years old. I went for regular physical checkup and the PCP heard a light murmur. No one has found that I had murmur it till now. After that I asked the PCP if I can have a echo cardiogram. He took EKG and confirmed that everything was fine. I went for Echo and found that I had a bi-cuspid valve. I was schocked when I heard this, but later learnt that lot of people have it. PCP mentioned to me that he will refer me to a Cardiologist. I went to the cardiologist and he told me that I have bi-cuspid valve and also dilated Ascending Aorta. He asked me to take a CT Scan. CT Scan confirmed that I had ascending aorta with the dialation of 5.2cm. I searched in Internet and found that I would need a surgery. I was shocked and took me a while to come away from the shock. I never had any symptoms till now.

PCP without discussing with Cardiologist fixed an appointment with a surgeon at Mt auburn Hospital, Cambridge, MA. I went and met him, he told me that its a fairly routine surgery and I don't it immediately but I have to get it done in next few months. But he gave me an appointment on June 8 for surgery and asked me to put metalic Valve. I was just scared, First I could not digest the fact that I have this issue, and even before that I couldn't accept the fact that I have to do the surgery in 2 weeks without any symptoms. Several thoughts ran my mind and I wanted to get an second opinon. I asked my PCP if he knows anyone outside Mt. Auburn and he wouldn't give me any name and so was my cardiologist. I searched in internet and found Dr. Richard D'Agostino (Lahey Clinic). I went and met him. He explained to me everything and told me that he has done several surgeries and I was happy that I met him. On top of all these we came to know that my wife is pregnant!! so I have to do my surgery before the baby arrives and make myself healthy

Later I went to Brigham and womens and met Dr Larawence Cohn, He didn't explain me well, instead he seems to be promoting just the hospital.

I have couple of questions

1. I live in Billerica, MA. Which hospital/surgeon you guys would recommended for surgery.
2. Which valve will be better for my age? (Metalic or Tissue) I read a lot of things about Coumdin and I am very scared about taking it (chances of stroke, bleeding)

I don't have any other conditions and I am healthy otherwise.(till now!)

 

[Tom F.]

Welcome to VR, sorry about the circumstances that lead you to us. My one point of advice is at your age look into a Ross Procedure. It has pros and cons, but it is an alternative you should know about. Just Google the term, you will find a lot on the net about it. Good luck.

 

[bahlvarun]

First of all welcome to this site, for once let me tell you that you should be happy you found this site. You can discuss all your issues here with all of us.

As said before BAV is disorder and it needs to be rectified, so please follow the doc, with respect to valve selection, unless it is necessary at your age its suggested that you go in for a mechanical valve. However Ross procedure is also an option where in your pulmonary valve is put in the aortic position and pulmonary valve replaced with tissue valve.

I am sure you'll have lot more queries once you move forward... just keep bugging us until it gets done..

 

[scuba_898]

welcome. I too am young, 29 yrs old and newly diagnosed with BAV. This site has helped me calm many fears and educated me on lots of issues on BAV. my advice to you is to keep asking questions here and to your doctors. there are many types of procedures that can be done, tissue valve, st.jude mechanical, onyx mechanical, ross procedure, and repair for starters. each one has pro's and con's. I have not been told that i need surgery yet. I imagine that that time will come within a couple of years. I like you am healthy other than BAV and played rugby up until being diagnosed. The Cleavland Clinic I here is one of the best hospitals to have the surgery done, there website is really good too. Welcome to the VR again.

 

[vasandhan]

Tom, bahlvarun, scuba_898, thanks very much for your messages.

The main reason why they are recommending surgery is for Ascending Aortic Aneurysm and while they are doing that they wanted to fix BAV as well. For ascending aneurysm there are limited choices so I have nothing to decide but to fix. On BAV, since there are many choices, I am kind of confused on which one to go with. Thanks for pointing out the Ross procedure, I haven't discussed about that with my surgeon. every one recommends metalic valve, but there is 8-10% chance of stroke, I don't which one to choose, Can any one suggest which one they would prefer if they were my age?

 

[ALCapshaw2]

Welcome to our world.

The GOOD NEWS is that your Heart Problems are all FIXABLE!
Also note that Heart Surgery has evolved into a Highly Refined Art. On a National Basis, First Time Surgeries have a 1% risk of morbidity and 1% risk of mortality. Those numbers are even lower with Top Rated Surgeons. Don't even think about 'doing nothing'. That would result in a short ride to eternity.

The Heirarchy of Heart Surgery goes like this:
Bypass Surgery, Valve Surgery, Surgery of the AORTA, Transplant Surgery. (Some may argue that Surgery of the Aorta is more complex than transplant surgery).

Bottom Line: You would be best served by finding a surgeon with LOTS of Experience dealing with BAV and Connective Tissue Disorders (which often result in Ascending Aortic Aneurisms).

These Surgeons are typically found at the Major Heart Hospitals such as Brigham and Womens or Mass. General Hospital which are both very highly rated (Top 10 I think).

Dr. Cohn is the only name I recognized from your list. Do a Search (see blue line at the top of the page) for his name, and change the default Time Period of the Advanced Search to "Any Date" and you will get many links to posts that mention Dr. Cohn.

Browsing through the Biscuspid Aortic Valve and Connective Tissue Disorders Forum should give you a better feel for your condition and lead you to understand that there are Often NO Symptoms before Disection / Rupture and sometimes even for Valve Disease. You have to "Trust the Numbers" and do what is needed to avoid further (and sometimes Permanent) Damage to your heart.

I also recommend that you read the "Stickys" at the Top of the Thread List in the Valve Selection Forum to learn the trade-offs between Mechanical and Tissue Valves.

It sounds like you have been told the usual 'fear factors' about living with/on anticoagulation (Coumadin / Warfarin). The BIGGEST problem is finding Competent Anti-Coagulation Care Providers. We have members who have been on Coumadin / Warfarin for 30 and 40 years. As I said, proper management is KEY. Many of our members have gone to Home Testing and Self Dosing. It is NOT Rocket Science. Read the "Stickys" at the top of the listing under the Anti-Coagulation Forum. Also see Al Lodwick's excellent website www.warfarinfo.com

That should give you enough reading to keep you busy over the summer!

Feel Free to ask any Questions as they come to mind.

'AL Capshaw'

 

[kfay]

I'm so sorry that you have found all this out and have to act so quickly. I'm glad you found this site though before your surgery. Choosing a valve is a highly personal decision. You shouldn't rely on anyone on here to make that choice for you. Each has pro's and con's. As you know, with mechanical, you will have to take coumadin for the rest of your life. I think most people on here who are on coumadin will tell you that it really isn't a big deal and for the most part, hasn't posed any problems for them. As for tissue, you won't have to take coumadin for the valve itself, although many will point out to you that at some point, you may have to take it for other issues. But, with tissue, at your age, you are looking at repeat surgeries, which in themselves pose a greater risk with each one. You must weigh which of those risks you are willing to assume for YOU!

I'm glad you looked outside of the one referal your PCP gave you. You should find the best surgeon you can. Check the stickies for a list of questions you should ask your Dr's. if you haven't already. As for the Dr.'s you have seen, I believe others on here have had experience with them and hopefully they will be along to tell you about them.

Congrats about the baby.

Kim

 

[skeptic49]

Welcome to VR! Our member Al has given you excellent advice above. I would only second strongly the need to find a surgeon that has LOTS of experience with aortic surgery, not merely valve replacement surgeries but aortic replacements. You should ask how many of this type surgeries has the doctor performed, and what is his mortality rate.

Best wishes,

Jim

 

[surfsparky]

Hi and welcome to the VR.com!

My hsuband Chris had the Ross procedure at age 31. Prior to surgery he was asymptomatic and we too were in shock when we found out he need OHS. But that's 6 years ago now and he's now living life to the fullest...owns a company, surfs, mountain bikes and a wonderful hubby to me and daddy to our three little ones. Feel free to ask any questions...it may seem overwhelming and scary now, but you too, will be holding your wee one and putting all this anxious time behind you. There is light ahead! Research all that you can and make the decision that feels right for you.

Take care,
Yolanda

 

[terodac]

Welcome~ I had the same thing, never knew it either. It is a shock for sure! You are at the right place so any questions somebody had walked the walk and can talk the talk for sure! I had the bentall procedure done to correct mine, but I am 2.7 years post op now. I know you are scared and have a lot of questions. Nothing is to small are big to answer, you are young and you will do just fine. I had mine done at 50 it was my birthday present. (LOL)........

 

[COLLEEN S]

Welcome. I would go to whomever does the most of these surgeries within your means or within your network. As for the valve issue, valve sparing is always an alternative..where they fix your own valve...a cardiac cath will tell them if that is suitable but most likely wont be able to tell for sure until they "get in there" whether you can have sparing done. With your young age, I would go mechanical...they are not metallic...and there a few different models of mechanical valves out there...'On-X' and St. Jude. I have a ST Jude and I am on coumadin. I will be self testing soon with my own monitor. YOu will learn more on this site than you ever thought possible...these people are the best...darn it Im gonna cry.