Bicuspid Valve with Severe stenosis - Need some feedback

[ron]

Hello to Everyone,

I recently found out that I have a bicuspid valve with severe stenosis (0.8 cm). I was born with a heart murmur, and a routine echo checkup showed me the news. I didn't have any major symptoms (Chest pain, fainting, etc.) yet I recently felt my heart palpitating oddly from time to time.

I have since spoken to 3 cardiologists who each did 3 echos. They all confirmed the same thing. I will do an angiogram next Friday, and then start scheduling a sugeon. All the cardiologists recommended I do the surgery sooner rather than later. I want to go to the Cleveland Clinic. I hear they are one of the best.

I have been reading a lot about valve replacements, and I am confident - yet nervous. I am still trying to process all this info. It looks like I will need a mechanical valve from what I am reading.

After reading this site, I guess I have a few questions:

1.) Does anyone know if they do minimally invasive surgeries for mechanical valve replacements?

2.) Have anyone on Coumodin had problems with nose bleeds? I live in Las Vegas and have sleep apnea, so I use a sleep machine (CPAP). This leaves me with blood in my nose at times, and I am wondering how I will manage this.

3.) Any suggestion on how to handle pre and post surgery emotions? I am a little jittery, but I also know that the mind can create many illnesses...

Thanks for your input!

Ron

 

[Jason]

Ron, I had my surgery not too long ago on March 7th. I have a mechanical valve as well as a graft above the valve where my aorta was stretching, resulting in an aneurysm. I didn't do much research before the surgery, primarily due to the small amount of time I had between diagnosis and surgery. I think you should feel very confident in the surgery, as success rates are very high and you are getting the right information to make great decisions. I am not a medical doc, but the answers to your question as far as I know them are:

1. I don't believe there are minimally invasive techniques that include mechanical valves. Someone on here may know different, but I don't recall hearing of anyone having this. I thought that the minimally invasive was for tissue valves only currently. Again, if someone knows different, I am sure they will chime in.

2. I have had no issues with coumadin/warfarin and nose bleeds, but I also have heard that some have. I have read about folks needing to cauterize their nasal blood vessels, some multiple times, while on the drug. I would definitely bring up this concern with your cardio and/or surgeon.

3. Read, write and repeat. I wish I would have found this board long before my surgery. I didn't find it until I was recovering at home, and I think it would have done wonders for my jitters prior to surgery. Knowing that there are so many people who have been successfully using coumadin/warfarin for many, many years would have been very calming on my mind in particular, as one of my major concerns going into the surgery was how I was going to live with this treatment. There are too many horror stories and too much misinformation out there on this drug, and the caring people on this board have very different stories to relate to us that made me, at least, feel much more confident in my decision.

Welcome, and I look forward to hearing your story as it develops and following your success as it plays out.

 

[ALCapshaw2]

Welcome Aboard Ron !

With BAV and Aortic Stenosis, you are wise to seek a Surgeon with LOTS of Experience dealing with those issues and yes, you are most likely to find such surgeons at the Major Heart Hospitals such as CC (which is the #1 rated Heart Hospital). I suspect that Dr. Pettersson at Cleveland Clinic is their most prolific Mechanical Valve Surgeon.

Mayo Clinic and UCLA are other good alternatives.

FYI, many Surgeons (and Cardiologists) use an Effective Aortic Valve Area of 0.8 sq cm or less as their 'trigger point' for recommending Aortic Valve Replacement. My non-professional guess is that most surgeons would want to do a conventional sternotomy just in case you have a possible Connective Tissue Disorder of the Aorta which is often associated with BAV. This is another reason to use a very experienced surgeon who has experience identifying and treating connective tissue disorders.

'AL Capshaw'

 

[Greg a]

Ron, a heart felt WELCOME to our OHS family we are all brohers and sisters in OHS YES THE WAITING IS THE WORST PART there are many answers for your questions here and the good part is no medical pros so you are hearing from those that have and are climbing the mountain .....there is a wealth of knowledge here for the future .....


-Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

-what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

-what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

-Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

I slept with a CPAP prior to my CABG x 5 and MVR(ring) procedure but no longer need it but while I did I did not have nose bleed issues and if I were you I would mention it to each and EVERY member of your medical team......again WELCOME to the nut house !!!!!!!

 

[epstns]

Ron - I just had my (very) stenotic bicuspid valve replaced on February 28th. I think I'm a bit older than you are (I'm 63) so I opted for a tissue valve. The advice you are receiving is the best of the conventional wisdom (in my opinion). Younger patients are usually advised to go with mechanical valves to minimize the likelihood of needing yet another replacement when the prosthetic valve becomes stenotic, etc. I guess I would agree. I was first diagnosed when in my early 50's, and if I had needed surgery at that time, I would have gone with the mechanical valve.

You've also been advised to read all you can here at vr.org. I'll second that motion, as I learned a lot here over the years I was in The Waiting Room. Whatever you can think of, someone here has probably experienced it and will be most willing to discuss with you.

As I mentioned, I am now 9 weeks post-op, and for the past few weeks i have been feeling much better -- really starting to enjoy life once again.

Welcome to the family.

 

[DeuxofUs]

Hi Ron,

Just wanted to welcome you to the board. I'm a female, 41 and I am at 1.0...just waiting for the trigger point.

I'm jittery too but confident at the same time. The success rate for this surgery is VERY VERY good. Also, cracking open chests just isn't as big of a deal as it once was... thanks to technology.

We are here for you and welcome again.

 

[ron]

Hello Jason,

Thanks for the response. I appreciate your input.

"I have had no issues with coumadin/warfarin and nose bleeds, but I also have heard that some have. I have read about folks needing to cauterize their nasal blood vessels, some multiple times, while on the drug. I would definitely bring up this concern with your cardio and/or surgeon."

Thanks for the heads up. I am currently getting a new machine and mask. I think this should do the trick. I never had blood in my nose when I lived in Los Angeles and used the CPAP machine. The CPAP people say that blood is common in the dry heat of the desert.

I feel confident that I will get this taken care of, but I am now thinking that I will eventually leave the desert to save my save any potential hassles.

 

[ron]

Hello Al,

Thanks for the input. I appreciate your info. I am definately going to head for a top notch hospital.

A question though...

What's up with connective tissue disorder? Just curious...

Ron

 

[ron]

Hello Steve,

Thanks for the positive words of encouragement!

I am looking forward to being where you are - in the post op stage!

Ron

 

[ron]

Hello DeusofUs,

Thanks for the positive words. I also feel very good about my success rate with this - just want to get the darn thing over with...

Ron

 

[ron]

Hello Greg,

Thanks for all this info. I will definately review this....

Ron

 

[jrkiwi]

I checked out the Cleveland Clinic and was disappointed by their lack of organization. I decided on Northwestern in Chicago and found a surgeon that has done over 200 Aortic valves last year. I get mine done May 10th. so I can update you a week or so after. Northwestern seemed to be much better organized and professional, I flew in to meet the entire surgical team and was sold. Best of luck to you..

Joe

 

[epstns]

Joe - Which surgeon did you choose? The head of cardiac surgery at Northwestern (Dr. Patrick McCarthy) was hired away from Cleveland Clinic about 5 or 6 years ago. He was a practice leader there, too. When I spoke with him about doing my aortic valve he said something like "I'm not number one in the country for this procedure, but I AM number two." Good man, superb surgeon, super team, including all the support staff and nursing staff at the hospital. I cannot say enough good things about them. The fact that I had all the issues in and after surgery is no reflection on them. It may be a reflection on how long we waited before I had the surgery, and had I been in the hands of a lesser team, who knows. . . ?

 

[kfay]

1.) Does anyone know if they do minimally invasive surgeries for mechanical valve replacements?

Ron, I think in Jason's reply to you he got confused between minimally invasive and percutaneous valve replacement. Percutaneous valve replacement (where they insert the valve via catheter) is only available for tissue valves. Minimally invasive valve surgery just means that they use a smaller incision and not necessarily done thru the sternum and yes, it can be done for aortic valve surgery.

 

[ron]

I checked out the Cleveland Clinic and was disappointed by their lack of organization. I decided on Northwestern in Chicago and found a surgeon that has done over 200 Aortic valves last year. I get mine done May 10th. so I can update you a week or so after. Northwestern seemed to be much better organized and professional, I flew in to meet the entire surgical team and was sold. Best of luck to you..

Joe

Hmmm. thanks for this info. I am seeing which doctors at Cleveland I can go to on my insurance plan (United Health Care). I don't know if I have the ability to choose the doctor of my choice or not...

 

[ron]

1.) Does anyone know if they do minimally invasive surgeries for mechanical valve replacements?

Ron, I think in Jason's reply to you he got confused between minimally invasive and percutaneous valve replacement. Percutaneous valve replacement (where they insert the valve via catheter) is only available for tissue valves. Minimally invasive valve surgery just means that they use a smaller incision and not necessarily done thru the sternum and yes, it can be done for aortic valve surgery.

This is good to know. I would really prefer to do the minimally invasice. I am keeping my fingers crossed that this can become a reality...

 

[Jason]

1.) Does anyone know if they do minimally invasive surgeries for mechanical valve replacements?

Ron, I think in Jason's reply to you he got confused between minimally invasive and percutaneous valve replacement. Percutaneous valve replacement (where they insert the valve via catheter) is only available for tissue valves. Minimally invasive valve surgery just means that they use a smaller incision and not necessarily done thru the sternum and yes, it can be done for aortic valve surgery.

This is right, I was reading one thing and thinking another. Thanks for clearing up my misinformation, kfay!

 

[drivetopless]

Hello to Everyone,

1.) Does anyone know if they do minimally invasive surgeries for mechanical valve replacements?

2.) Have anyone on Coumodin had problems with nose bleeds? I live in Las Vegas and have sleep apnea, so I use a sleep machine (CPAP). This leaves me with blood in my nose at times, and I am wondering how I will manage this.

3.) Any suggestion on how to handle pre and post surgery emotions? I am a little jittery, but I also know that the mind can create many illnesses...

Thanks for your input!

Ron

Welcome, Ron! I was having lots of palpitations and lightheadness just before surgery too.

1. I just had my aortic valve replaced in January via a mini-sternotomy incision which is about as minimally invasive as it gets for AVR. My scar is 2 5/8" long and is quite "cute." They should be able to do that for you if you don't need any other repair work while they are in there.

2. I had a couple of minor nose bleeds initially while they tried to get the coumadin leveled out. At the time my INR was >4. However, now I have no issues with nose bleeds at all. INR is under 3. If you go mechanical, you might want to ask about the On-X valve. It is under trial for lower maintenance levels coumadin dosage and/or alternative meds in the future. That was one of the deciding factors for me.

3. Pre surgery waiting is the hardest. Get all the information you can about your options. Recognize that it is the best time in history to be having this surgery. They do this surgery all the time and it is almost routine. Get a good surgeon who has practiced on lots of other folks before you.

Good luck! Let me know if you have any questions.

 

[ALCapshaw2]

Hello Al,

Thanks for the input. I appreciate your info. I am definately going to head for a top notch hospital.

A question though...

What's up with connective tissue disorder? Just curious...

Ron

There is a fairly high correlation between congenital BAV and Aortic Aneurysms which can be a result of a connective tissue disorder. Someone once posted a percentage of BAV patients who also had Aortic Aneurysms but I don't remember the number, but it is not insignifigant.

The Gold Standard for identifying Aortic Aneurysms is a Chest CT or MRI and it is probably wise to ask about having one of those tests before your surgery just so that the surgeon can know what to expect.

'AL Capshaw'

 

[Luana]

1.) Does anyone know if they do minimally invasive surgeries for mechanical valve replacements?

2.) Have anyone on Coumodin had problems with nose bleeds?
Ron

Yes, I had an AVR in 2009 with a small thoracotomy (port access) incision; there's no reason a mechanical valve cannot be placed this way unless you're not a candidate for another reason. It's an incision, about 3 inches, between 2 ribs, on the right side of the chest about 3 inches down from the collar bone. I didn't want to have my sternum broken, even with a smaller incision, and surgeon confirmed I was a good candidate for such an approach. I have a St. Jude Medical Regent valve. I'm not sure if Cleveland Clinic does this approach. I don't recall any folks here who've been to CC with this incision.

No Coumadin problems at all, a few speed bumps shortly after surgery, but have been very stable for over a year now. I freely eat green vegetables and salads, and don't restrict such intake.