The waiting is the hardest part...any insight to a couple Q's?

[T in YVR]

Hi all,
I am new to this board. It's a fantastic support site and very informative. I'm male/46 and was recently diagnosed with a bicuspid aortic valve after a stress test and ultrasound (in early Feb. by an internal medicine dr.). I just saw my cardiologist on March 1 for the first time. He looked at my results which indicated moderate to severe regurgitation, and my left ventricle dilated to 65 mm (LVED) (which I believe is in a range they would call "moderately dilated"). My EF% is 60%, which he said was ok still. My blood pressure and echo results were normal, and I am fairly asymptomatic other than some sporadic chest aches). The Dr. heard my murmur, checked my pulse and said he detected "water hammer pulse". Based on all the data thus far, he suspects I am in the "severe" category and will need aortic valve replacement this year. They have ordered up a CT/Angiogram and TEE for me (dates TBD), and based upon confirmation of his assessment, will line me up to meet a surgeon.

I have somewhat come to grips with my situation, but the waiting is absolutely the worst (for more tests/answers/complete insight into the whole picture). Its likely going to be at least a few weeks for the remaining tests, then another month or two before the surgeon visit, etc. I suspect that once I have all the answers I'll feel better about it all....its difficult not to worry though without the complete picture/true severity. While I wait I thought I would ask a couple questions - if anyone has experience with this, I would be very grateful.

- Is there any way to know if/when you would do permanent damage to your heart (based on how much it enlarges, for how long, other characteristics, etc?). I'm concerned about the left ventricle enlargement and whether it will go back to normal size/operation, as well as how quickly it can change and become more severe. Or is it completely case by case?

- When people experience chest pain and shortness of breath as symptoms, are we talking real noticeable differences from what you may be accustomed to? Right now, I think half the symptoms I sense are between my ears, as I am noticing every little ache, breath, beat etc. My upper left chest seems to have a regular dull ache that doesn't go away.

- I am located in Vancouver, BC. If there is anyone from this area, do you have any surgeon recommendations? I have looked on rateMDs.com, but that's it (I could not find any on this board).

Sorry for the long post - thanks for any help you can offer,
Tony

 

[JimL]

I'll contribute just a couple things. You will never get all the answers, but eventually you do what the surgeon says, at least based on my experience. I was also 46, but very symptomatic. Shortness of breath for me meant sitting down halfway across a room to get my breath back. Shortness of breath meant sleeping sitting up, because if I laid down, I couldn't breath. I had no chest pain, so can't comment on that. Oh, by the way, shortness of breath is something in the past which I haven't known for eleven years now.

 

[Oilman]

Welcome Tony, glad you have found this site for some added support with your heart condition. I noticed your a west coast boy, I was born in the Vancouver general and lived in East Van until I was 18 yrs old, miss the west coast. My family doctor detected my murmur back in 1980 in Kelowna, had the echo done and confirmed BAV at that point. My Cardiologist started seeing my left ventricle enlarging about 5 or 6 years back but wasnt concerned with it at that point, and I just carried on doing everything, as I had no symptoms. I experienced a small TIA 3 yrs ago, luckly no permanant damage. Last Sept had a Afib event which led me to my surgery 3 months ago. My symtoms where shortness of breath and real bad fatigue after the Afib for about a month or two. I waited 10 weeks to get into surgery from the day the cath angio was done, and confirmed it was time. I was concered also with permanent damage, as the LV of the heart had enlargement. I had a echo done 6 weeks post surgery and the doctor said he is seeing normal sizes in the left ventricle now, so we think it may be going back to the normal range as it re models. I also found myself feeling every little ache and heart beat while in the waiting room, I was scared out of my mind that I might not make the surgury, normal thinking, in our situation. I can say today that I wish I had a better coping tool, because all the worry was for nothing. So far everything is running good and have not had any of my past symtoms... Im pleased with my progress today. I know here in Alberta that I didnt get to pick my surgeon, but I am confident that the DR who did my work was well experienced as he had done some work down south at a Mayo clinic, and Im thinking probably most of the surgeons today are well equipment with what our needs are, so good luck with your journey and hope to hear from you soon.

Doug

 

[Bina]

Hi Tony and welcome. I was also age 46 when I had AVR, but i had horrible symptoms for a long time before...denial almost did me in. You are fortunate to get a grip on this sooner rather
than later. When you have the TEE or TTE test it will show more of what is going on with your valves as they will give measurements and a detailed summary report.
Hang in there !

 

[epstns]

Hi Tony, and welcome to The Waiting Room - the virtual room where many of us await their own turns at valve surgery. I was diagnosed with moderate to severe aortic stenosis at about age 54, but was able to wait over 9 years before my valve progressed to the point where surgery was warranted. As you'll read often here, it is different for each of us. I kind of became an expert at waiting, and coping with it. I found that once I accepted the fact that I would eventually need this surgery, I was able to stop worrying about "if I need it." There is a choice for each of us, but it is binary - either we opt for surgery or we do not. The choice is obvious to most of us. Choosing to do nothing results in a needlessly shortened life span.

I only had trace regurgitation, so I am not familiar with the symptoms and progression of that condition. My stenosis didn't start to show symptoms for many years, until my statistics were well into the "severe" range. Again, each of us is different, and for some of us our hearts are able to compensate for their shortcomings for a long time.

I don't remember the exact statistics, but I do know that the docs have size ranges for each of the chambers of the heart, and when a patient's left ventricle, for example, enlarges past these limits they will recommend surgery. Their size limits have been developed over many patient observations to be the maximum size that can be expected to usually return to a normal size after recovery. They not only look at chamber size, but also at wall thickness, because if the muscle wall becomes too overdeveloped (compensating for a bad valve), it may not revert to a normal size (they call this remodeling).

I can't comment on your symptoms as I never really had any of the "cardinal" symptoms (chest pain, shortness of breath, fainting). I just lost more and more of my exercise capability and was tired much more of the time.

I know that the answers to your questions are here somewhere. We just need someone else to point you to them. (Posting from work - don't get the time here that I would like.)

 

[T in YVR]

Thanks everyone for sharing your insights and experiences. It certainly helps. Steve - The diagnosis said my wall thickness was normal, so that's good - thanks for the info on how that measurement comes into play.

I'll keep reviewing the boards to assist with my research - it helps keep the mind productively occupied during the wait. The first doctor (of internal medicine) who diagnosed me told me I was likely a '5 year guy' (until surgery), then my GP told me '12- 18 months', and then the Cardiologist said - 'nope, you're likely at a severe stage and it will be this year' - and he would know best. I figure if I keep seeing a few more doctors I should be having this operation in the next couple weeks

Tony

 

[babshappy]

hi tony
I had my surgery at VGH in 2009, My surgeon has since moved to Kelowna to head up the surgery dept..... so I do not have any recommendations, however.I think both hospitals StPauls and VGH are phenomenal for heart surgery. my cardiologist recommended my surgeon ,and I just took his advice..I would trust my cardiologist...Vancouver is a leading centre for heart surgery..they know what their doing.

 

[Tom C]

Tony,

The measurements used by my cardiologist to trigger surgery are a left ventricle diastolic diameter base greater than 70 mm and a systolic diameter base greater than 50 mm. If surgery is done at or around those numbers, I'm told the heart has a very good chance of going back to its normal size. An EF of less than 55% and/or progressing symptoms are also indicators. My bicuspid valve was found just over a year ago when I went in for a check up prior to my first colonoscopy at age 50. My first echo had my left ventricle measurements at 62 and 41 and an EF at 55%. Without any symptoms, I figured I had years to go before surgery. Unfortunately, my numbers went up very quickly and because echos can vary quite a bit, they were confirmed by an MRI. Just 14 months after my first echo I am at at 71 and 50 and will have surgery next month.

My situation sounds somewhat similar to yours as I have moderate to severe regurgitation and very few symptoms. I run 4-5 times a week and only because of my heightened awareness do I notice getting a little tired. I sometimes feel a heavy heartbeat and occasional soreness in my chest, but without the diagnosis I would be writing those things off as aging. So I'm actually lucky my doctor heard a faint murmur, because I might not have developed symptoms and actually gone to a doctor for them until I also had real damage. It doesn't feel much like luck at the moment, though.

Because I have regurgitation without any stenosis, I meet the criteria for an aortic valve repair. Very few places attempt repairs, but I happen to live near the Mayo Clinic and have a surgeon who has been doing them for 25 years. Once they start my heart back up, he will evaluate the repair and either go with it or start over again and do a replacement. So I do get to participate in the valve choice discussion, but as a Plan B for now. My surgeon told me to expect 12 years from the repair, but the Mayo cardiologist says he has seen repairs last much longer, even lifelong. If you have no stenosis, it may be worth looking into.

Tom
Saint Paul, MN

 

[T in YVR]

Wow Tom, it sounds like your situation is very similar to mine. Its great to get a perspective that hits so close to home - thanks. My measurements were done at the beginning of Jan/13, so I'll be interested to see what change has taken place when I get my next tests (I do my TEE next week). I inquired about valve repair but it does not sound like they will do that in Vancouver, so I have to go either mechanical or tissue. As for the valve selection, I am moderate to severe regurg with no stenosis as well. They are doing alot more TAVI based replacements in Vancouver, so one option I asked my Cardiologist about was doing tissue now, with the hope the TAVI will be the more preferred/common procedure later on if possible vs. OHS, when the tissue valve wears out. Its a risk though, since TAVI is only done on high risk patients today - no guarantee that you don't end up in OHS again in 10-15 yrs instead of TAVI. I strongly suspect I will be going mechanical given my age. All the best with your surgery next month - I hope it goes smoothly.
Tony

 

[Mom2izzy]

The waiting is the hardest part...any insight to a couple Q's?

I can't answer most of your questions, but I can tell you that after having an enlarged chamber in my heart for over 30 years (due to mitral regurgitation), 8 months after my surgery, my chamber size was back in the normal range. I don't have the exact measurements, but it does seem that some remodeling can happen after surgery.