New to the site, and in the waiting stage. AVR

[Pat in NH]

Hello all,

I'm a 41 year old male with a BAV. I was diagnosed in my teens, before that time it was thought to just be a murmer. Around this time I was also clinically diagnosed with WPW syndrome. I do not have WPW symptoms very often (maybe once per year) but thinking that I'd need AVR in the future I had an electrophysiology study (EP study)recently which would have included ablation to stop the WPW. Fortunately, (or unfortunately depending on how you look at it) the test was negative and the EP Dr. said I absolutely do not have WPW. What I do have remains a mystery for now.

Well, back to the BAV. I have been followed by a few cardiologists over the years, and have had a stress echo every other year with resting echos on the years in between since about 2000. My aortic stenosis has been slowly gaining ground and my last stress echo (3/09) showed an aortic valve area of 1.1 square centimeters. But with my last resting echo (3/10) that number has fallen to just .84 square centimeters. In my opinion, a big difference for one years time. So it looks like it won't be too long before I will need surgery, although I am currently asymptomatic. I have no trouble doing my half hour on the eliptical machine and getting my heart rate up around 150 bpm for most of that time.

I have been doing research on this subject for only about a month or so. Before that, I hadn't the slightest clue what any of the numbers on the reports meant. Not that I'm much better now, but I'm gaining knowledge quickly thanks to sites like this!

Currently, I'm leaning towards having the Ross Procedure done by Dr. Stelzer in NY. I'm also considering the On-X mechanical valve as a back up. I've had one correspondence with Dr. Stelzer about my candidacy and have since sent my last echo results along to him, hoping everything looks favorable. I actually met an emergency room Dr. who had a Ross by Dr. Stelzer. I was in for a very sore throat on a weekend, and he happened to notice the BAV in my chart. He told me about the procedure and a wonderful Dr., and highly recommended both to me.

I know I'll have many many questions, but I'd like to start with just a couple for now.

1. What is my next step? Testing for more connective tissue problems like aneurysms? Something I'd like to know before surgery.

2. Is it nessasary to wait until symptoms show? Or would it be better to have surgery before any damage is done?

I truely look forward to getting to know as many of you as possible! I was beyond pleased to find this site and have been reading almost constantly since, just ask my wife! And I apologize in advance if this post rambles on in too many diffent directions. Since coming to the realization of my situation, my mind has been scattered and I've been very anxious. I'm not sleeping well and having a hard time working or even playing with my 8 and 5 year old boys.

Thanks for reading my long post

-Pat

 

[karen14]

Hi Pat in NH, welcome!
You'll find awesome support on this site, as well as very sound suggestions and experience. I waited most of my life to have the AVR as well. It became necessary to have it when I turned 45 yrs old. So I'm praying for you that your future surgery will be successful and all is well! Stay in touch & let us know how you're progessing, etc. ~Karen

 

[EireCara]

Hi Pat, I just wanted to welcome you to this wonderful site. Best wishes.

 

[MarkU]

My BAV was first diagnosed when I was about five years old. I had annual checkups, usually with a EKG, but wasn't given any restrictions on my activities.
Had my first catherization at age 15, mostly just to confirm the earlier diagnosis and get baseline data. (I had to miss two days of football practice which irritated me).
I was basically told I probably didn't have to worry about anything unitl my 40's and then only when, or if, I developed symptoms that affected my lifestyle. I continued to have annual check-ups, usually with an EKG.
True to form, at age 47 I started to develop chronic fatigue, shortness of breath, and fluid build-up in my lungs. My cardiologist determined it was time for surgery after listening to my heart for about ten seconds, followed by a confirming echocardiogram.
My cardiologist gave me a three month window to have my surgery to minimize the risk of any heart damage. I elected to have the surgery right away (two days later).
They did a catherization the day before to see if there was anything else that needed to be done while they had me open. Fortunately everything else was in good shape.
During my surgery they discovered that my aortic valve was much more calcified than they thought and that my symptoms should have been much worse based on that. They also determined that I had developed some left ventricular hypertrophy, which my surgeon feared might be permanent.
My surgery went well: Had the surgery on a Friday morning and was discharged the following Tuesday. My recovery was a bit frustrating at times and took longer than I thought it would. Even though I was back at work in about four weeks, it took me about nine months to feel fully recovered.
I was very fortunate that the enlargement reversed itself within about eighteen months post-op.
Like you, I had been very active prior to my surgery and my doctors think that actually served to minimize my symptoms and mask the severity of my valve damage.
My surgery was ten years ago this December. I'm feeling fine and am more active physically than I've been since I was in my 20's.
I'm luck to have a great cardiologist who I communicate well with and understands me.
I continue to have annual check-ups, but only have echocardiograms every two years.
Good luck and welcome to the forum.
Mark

 

[Maryka]

Welcome! A lot of us learn how serious our situations are when we reach our 40s. (That was the age when my aneurysm was first discovered.) You are on your journey now. Please keep us updated!

 

[Adrienne]

One of the members here, StretchL, had a Ross procedure by Dr. Stelzer a few years ago, and it was super successful! You should PM (private message) him.

 

[skeptic49]

Welcome to VR.org!

Maybe I missed it (I'm operating on Martini time now) but what about your aorta? BAV is often accompanied by aortic dilation and/or aneurysisms. Have you had a Ct scan of your entire Aorta? I would have one ASAP if you haven't already. At 41 if it were me, I'd go mechanical and not Ross, or valve repair, etc. No way you want to go through this more than once if you don't have to.

Best wishes,

Jim

 

[a4wanman]

My murmur/BAV was detected at age 6. I used to have echos and checkups every 3 years, that turned into 2 years, that turned into annual checkups. Echos were also spaced out until the last few years - I had an echo at each checkup. I'm 39 now. Over the years, my LV enlarged to compensate for the leaky aortic valve - 6.7 cm. Also, the aorta has enlarged to 4.5 cm. Ejection factor is at 50-51%. I will have shortness of breath if I exert myself, but no chronic fatigue or fluid buildup. After about with a bacterial infection (enteroccocus durans) from October 09 until January 2010, cardio and surgeon indicate it's time to address the valve and aorta. I'm scheduled for surgery on April 26th. Supposed to have a cath and CT scan the week before (waiting on the day).

Had a TEE in January, but was told there was no indication of infection on the valve, but still labeled it bacterial (infective) endocarditis. Guy doing the TEE said he saw a hole in the valve, but cardio was not convinced with that finding.

I'm leaning toward repair (if possible, but unlikely from my understanding about stenosis). Surgeon said it's less risk for a second reop in 10 years than a mechanical valve now. I'll also have the ascending aorta replaced. After talking with the surgeon, I have a feeling I'll get the St. Jude with built-on graft.

As others have said, check for the aortic aneurysm. As far as surgery, my cardio said you want to address before it's too late, but not before it's necessary. Too many factors, so one size does not fit all since each person have similar but different conditions. If I did not get the endocarditis, I'm convinced I would not be having surgery in 2 1/2 weeks.

Scott

 

[Kathy McCain]

Hi Pat,

Welcome to the forum!!!

It is understandable and perfectly natural to be anxious. Believe me when I found out about my condition, I felt like someone hit me with a sledgehammer. I was absolutely PANICKY! We have a super group of people here, that are very suppportive, and quiet knowledgable. relating their personnel experiences, on this forum.

I did not have serious symptoms yet. My Dr's however, did not want to wait. I realize now it was the wise thing to do. I was already experiencing fatique and shortness of breath on the stationary bike. They're was no enlargement of the heart, or any other abnormality, or damage. I would write any questions down, and consult with your cardio and surgeon.

Good luck and please keep us updated

 

[Guest]

Hi Pat....
I'm another Pat, but female! I had AVR and mitral valve repair in January. The condition was actually diagnosed 12 yrs. ago, but I remained asymptomatic until about 18 mos. ago. My advice would be to be VERY aware of any change in fatigue, shortness of breath, exercise decrease or avoidance.....I think I was developing symptoms for about a year before I realized what was going on, and then things deteriorated fairly rapidly. My cardio had been doing echos every six months and there was no physical change in the heart....so we went right to surgery when symptoms became very apparent.

This forum is a great resource. Ask away!

Pat

 

[Pat in NH]

Thank you all for your welcomes, personal stories and advice! Having a group of people with such similar experiences to talk to is a great feeling! Quite relieving infact

I have been making a list of questions, some of which you have mentioned. Questions about pre-op testing, procedure and valve types, and a few post-op concerns. I'm also reading "The Patient's Guide to Heart Valve Surgery" By Adam Pick which has been very helpful in organizing my thoughts and bringing up details I hadn't or wouldn't have thought of on my own.

skeptic49,
Looking back through my records, it looks like at my last echo my aorta was normal. I'm not sure if an echo is adequate for that purpose though. I do plan on asking for a full chest and a head/neck MRI to look for connective tissue abnormalities. Would a CT scan be better?

I've actually been aware for several years that BAV is often just a symptom of a system wide connective tissue disorder. And I'm at least a little surprised/concerned that none of the doctors i've seen have suggested testing.

Adrienne,
Thanks for your suggestion to PM StretchL, I will do that.

Thanks again to all!

 

[skeptic49]

=Pat in NH;449384skeptic49,
Looking back through my records, it looks like at my last echo my aorta was normal. I'm not sure if an echo is adequate for that purpose though. I do plan on asking for a full chest and a head/neck MRI to look for connective tissue abnormalities. Would a CT scan be better?

I've actually been aware for several years that BAV is often just a symptom of a system wide connective tissue disorder. And I'm at least a little surprised/concerned that none of the doctors i've seen have suggested testing.

Pat,

It was a surgeon that had me go for the CT scan...guess he suspected CTD type issues since I have a BAV. Yes, I would think that a 64 slice CT scan would be the way to go. While my ascending aorta is ballooning, I was relieved that my scan showed no problems with the aortic arch and descending aorta.

Jim

 

[Pat in NH]

Pat,

It was a surgeon that had me go for the CT scan...guess he suspected CTD type issues since I have a BAV. Yes, I would think that a 64 slice CT scan would be the way to go. While my ascending aorta is ballooning, I was relieved that my scan showed no problems with the aortic arch and descending aorta.

Jim

Thank you Jim, I'll put that on my list.

 

[Ross]

Pat,

It was a surgeon that had me go for the CT scan...guess he suspected CTD type issues since I have a BAV. Yes, I would think that a 64 slice CT scan would be the way to go. While my ascending aorta is ballooning, I was relieved that my scan showed no problems with the aortic arch and descending aorta.

Jim

Just to let you know, some facilities now have 128 and 256 slice CT Scanners.

 

[olefin]

Hi Pat,
Welcome to the forum.
Diagnosed with mild Aortic Stenosis at age 46. Had no symptoms, no health problems other than the doc heard the valve. Did the echo, cardiologist said I'd need a new valve in about 10 years. He was right about the 10 years. He continued with yearly echos and some stress test. I had been daily jogging for many years but about a year before surgery switched to fast walking. Never knew there was a problem and felt great until a month before surgery I blacked out during my daily fast walk. ( Had a echo/stress test 2 months before.) Still felt great with no other symptoms when admitted for AVR.

1. What is my next step? Testing for more connective tissue problems like aneurysms? Something I'd like to know before surgery.

My cardio did a heart cath just before surgery, found no other problems other than the valve.

2. Is it nessasary to wait until symptoms show? Or would it be better to have surgery before any damage is done?

I feel some cardiologist may wait too long. In my case I should have had surgery the year before. I was fortunate that no damage was done when I blacked out.
Asked my cardio where he'd go for surgery if it was him. He said Cleveland or Texas Heart. I went with Texas Heart for it was only 550 miles. He recommended a surgeon that he knew at Texas Heart.

Wish you the very best.

 

[sylviayasgur]

hi pat,
my husband, joey, had his ross procedure done by dr. paul stelzer almost 9 years ago. he is a wonderful, talented, and brilliant surgeon with an incredible bedside manner.
i cannot recommend him highly enough. please feel free to email me at:[email protected] anytime with any questions, etc. i'd be more than happy to talk to you about any of it.
i think that your surgeon would let you know what other testing might be necessary and he/she would be able to guide you. once joey and i had decided on dr. stelzer, we felt like a load had been lifted. making these decisions, little by little, removes some of the "unknowns" and might make you feel a little less anxious in some ways.
please let us know what you decide to do.
we are all here to help.
stay well,
sylvia

 

[Broken Hearted]

Hi Pat in NH -

(I'm just over the border in Mass.) Also diagnosed with murmur years ago, then aortic stenosis, and now with dilated aorta too... It's great to get older... Apparently the stenosis is now severe (0.6-0.7), so they want to replace that and repair aneurysm at the same time, even though at 4.2 that's not yet critical. Mechanical valve is not for me; am not good about remembering/taking medicines or getting levels checked regularly, and would be driven nuts by the clicking sound mechanical valves make. So, it'll be tissue, at the Brigham, and just have to decide when. Did think about traveling further afield, but decided you probably want to be closer to the people who actually did the operation.
Here's wishing good luck to us all.

 

[Pat in NH]

Thanks again for your replies! I get a feeling of being less "alone" with each one.

olefin,
Yes, it also seems to me from reading threads here that some cardios wait too long. My current cardio in Exeter NH has said to wait for symptoms. Not sure I'm completely comfortable with that. I will be meeting with her on Thurs to discuss options in more depth.

sylviayasgur,
I am familiar with your story! Your posts have come up on several searches, very helpful. I will most definitely take you up on your email offer when my research gets more focused. At this point I'm still all over the place as far as which procedure, valve, surgeon etc. I might possibly be making this whole thing more difficult than need be. I suppose/hope this is normal??

Broken Hearted,
It sounds like we're in a very similar situation. And probably live very near each other, I'm just one town into NH from the border! I've also been looking into Brigham and Womens extensively. I have a friend that is a nurse there and he has recommended a few surgeons to me. It felt good to come up with the same name at the top of our lists. Dr. Prem Shekar. I was looking into him because of his interest in CTD's. http://brigwom.photobooks.com/direc...&sskeywords=129&mkt_display=Y&pict_id=0004335

I would like to take more time to figure out my route, but my wife is getting firm about making a call to BWH's Valve Center tomorrow to get the ball rolling. I guess it's not a bad idea, I just feel like I'm not finished sizing up my options. I can always change my mind, right?

 

[Jkm7]

You have two of the nation's top heart centers right in your backyard.
With Mass General and Brigham and Womens, we are very blessed to have such outstanding heart surgery/ medical care available to us.


Best wishes.

 

[Broken Hearted]

Hi again Pat -
Yes, our situations do sound similar. (And we probably live fairly close!) I still feel as if they've all made a mistake, as I don't really have symptoms either, but I guess the numbers don't lie... Hope to see Dr. Bolman at Brigham as this is his specialty. I keep trying to figure out the best time to do it, but don't think there is one!