Aortic Stenosis Questions

[Steve]

Hi -

I've been told earlier this week by a cardiologist that I have aortic stenosis - probably a calcified bicuspid valve.

The echocardiogram showed a 1.4cm opening. After looking through some of the past posts on this condition, it seems as though the valve condition can stay relatively stable or can progress rapidly to requiring valve replacement.

I do aerobic exercising daily (and have for years) and feel fine. I have no symptoms as normally described. However, I do have a very high threshold of pain and generally just don't "feel" hurt or pain when most people do.

This has come in quite handy in past surgeries, allowing me, for example, to walk out of the hospital in less than 60 hours after having my gall bladder removed.

Some other past histories that may come into play is treatment for Hodgkins disease (1978), and subsequent radiation induced "body malfunctions" that have, among other things, caused me to be on coumadin for the past 20 years.

I've been treated for two pulmanory embolisms and had no trouble identifying the problem the second time as coughing up blood and a pain in my lung when breathing deeply made me remember the first one which I ignored for two days.

In the case of my aortic valve, I don't want to ignore something critical. I explained all of this to the cardiologist who said, "don't worry - you'll have no doubt something is wrong."

From the people who have been through it - what should I be looking for? I'm scheduled for an echo cardiogram in 1 year, unless I declare an emergency to the cardiologist - which he encouraged me to do if I felt in anyway "strange."

Advice would be appreciated - don't need sympathy, I've been told "you could die from this" on 3 separate occassions for other medical conditions - after a while it just doesn't matter. I could be sitting in my living room and jet engine could fall through the roof.

I don't mind the valve replacement - I just hate losing the time to another frigging medical problem - and don't want to wait until it's really critical.

 

[Phyllis]

Welcome to the forum, Steve! You've come to one of the best places to get all or most of your questions answered. There are quite a few members on this forum who had valve replacement and had Hodgkins disease when younger and it is suspected that the radiation may have caused the stenosis. If you do a search for Hodgkins, you will come up with those posts. When you are athletic and have a high threshold of pain, you may not even be aware of minor symptoms. My husband had no symptoms until he fainted on the tennis court and had the surgery, shortly thereafter. What were your numbers from the last echo and was there any thickening of the heart? Wishing you the best.
Phyllis

 

[Steve]

Yes, I've already searched the site for the Hodgkins related posts and stories and have read them. Other than the 1.4cm opening in the valve, I don't know other "numbers."

However, like some other people, I also have a left bundle branch block - which I've been aware of since 1982.

Were there any other warnings prior to your husband fainting? Or, did he just suddenly find himself on the ground?

This is a bit worrisome as I bicycle regularly, in-line skate, etc. & don't want to suddenly crash in an uncontrolled manner. I've crashed in the past, but know how to fall without getting hurt to not exacerbate the problem because of the coumadin - that's why I'm wondering what "little things" I might try to self evaluate during and after exercise.

 

[Mary]

Just a quick reply for now Steve.
A 1.4 opening would probably be classified as mild stenosis. Mine wasn't that large when I was diagnosed back in June of 2001. I'm guessing that they will do yearly echos to keep an eye on it, but for now, I think you've got a few years before worrying about valve replacement.
Of course, that's only my opinion!
Mary

 

[perkicar]

Hi Steve---

I am one of the several who are post radiation for Hodgkin's--I had my valve replaced 9 weeks ago at the Cleveland Clinic. I had had a murmur mentioned to me for several years (the last 15) but in 2001 I saw a cardiologist and had a heart cath, where my valve area was 1.8 cm2. My valve area (through TEE) was 0.8cm2 in 11/2004, and 0.6cm2 in 2/2005. They also look at your peak gradient, basically the velocity of blood flow across the valve, which also tells them how hard your heart is working to push blood through the reduced opening. Usually 0.6 cm2 is the size when they start talking surgery, although they are also interested in secondary symptoms like shortness of breath (the only one I really had alot), chest pain (I had that if I overdid it, like climbed alot of stairs, especially when my valve was getting small), or dizziness/fainting. You kind of have a double whammy with the bicuspid AND the history of radiation. My stenosis progressed quickly (according to Dr Lytle, my surgeon) and, as Dr Lytle said, the indication for replacement in a radiation damaged valve is not the same as a "simple" stenotic valve.
Cleveland can do consults via mail/computer if you send them you records. I would HIGHLY recommend Dr Lytle as he is considered one of the experts in dealing with radiation induced valve disease. He is also a good person, easy to talk to and very down to earth. My cardiologist in Cleveland, Dr Griffin, also has special interest in radiation and valve disease. I see him next week for my post surgery visit.
I'd be glad to help you out in any way I can. I'm glad I had the valve replaced, although the surgery and recovery was not a piece of cake. (and Ross, you can say I told y ou so LOL). But it's very doable.

 

[Phyllis]

Were there any other warnings prior to your husband fainting? Or, did he just suddenly find himself on the ground?

Dick realized after the surgery that maybe there were other little clues (chest discomfort while swimming) and although he was basically symptomless, his recent echoes had shown that it was time for surgery- he was just in denial. Fainting is a symptom of stenosis, but I don't remember ever reading about anyone else on this forum having that experience. He had been playing doubles for a couple of hours, felt faint, went to sit down on the bench and passed out. He was still in denial at that point- thought it was dehydration, but we seriously started looking for a surgeon at that point and within a few weeks he had the surgery. We had been researching valves, surgeons, etc. for a year and although we had not yet found VR.com, we knew which valve he wanted and that he wanted minimally invasive surgery if possible. It sounds like you have a ways to go and will have plenty of time to do your own research. Perkicar's advice is right on the money!

 

[tobagotwo]

I had an echo that showed a 1.1cm² valve opening in January of 2000. Right after that, I had my first contact with Hank's Valve Replacement site. I was on and off the site (mostly off) for several years, dropping by to read or to leave a tidbit. My surgery didn't happen until April of 2004, at which time my valve was at about .8cm².

So, although everyone calcifies at different rates, it is likely that you have some years before surgery is required, assuming other heart issues don't intervene.

Annual echoes will help tell the tale of how rapidly your valve will calcify. You will probably gradually experience more fatigue, which you will relegate to advancing age. You may feel a tightness sometimes in your throat when climbing stairs quickly, but it will dissipate rapidly, and you will discount it as muscle pain or a fleeting sore throat. You may start experiencing heart palpitations, particularly at night after a hard day.

It is likely that the echoes will be warning you before that happens. There will be gradual increases in chamber size, and decreases in valve opening size. You may see words like hyperdynamic start to show up in your reports or phrases like mild concentric left ventricular hypertrophy. Get and keep copies of all of your echo reports. Note the changes in the chamber sizes. You will find that your left ventricle can expand quite a bit before it is officially considered "enlarged."

You will probably be counselled not to shovel snow, lift weights, or carry heavy objects. You could well be advised to limit many more of your physical activities during the last few months before surgery. To your bewilderment, you may experience "pelvic steal" for the first time in your life.

By the time you have your surgery, you will probably fully realize on some level that you are ready to have your heart fixed. And it won't disappoint you, because things do get good again afterwards.

Best wishes,

 

[ALCapshaw2]

Carolyn wrote: "the indication for replacement in a radiation damaged valve is not the same as a "simple" stenotic valve."

OK, you got my attention , what is the indication for replacement of a radiation damaged valve?

Also, was Dr. Lytle "in network" for your insurance? If not, how much was your evaluation and did your insurance cover it? You've got me thinking again...

'AL Capshaw'

 

[perkicar]

Carolyn wrote: "the indication for replacement in a radiation damaged valve is not the same as a "simple" stenotic valve."

OK, you got my attention , what is the indication for replacement of a radiation damaged valve?

Also, was Dr. Lytle "in network" for your insurance? If not, how much was your evaluation and did your insurance cover it? You've got me thinking again...

'AL Capshaw'

Oh, Al, you ask all these hard questions.
The evaluation was covered by my insurance. Actually, the initial one where I just sent him all my records and he sent me a letter back, I don't ever recall seeing a bill for. Now, when I went up and had every test from soup to nuts, that was a different story. I think the usual charge (if you go through what I think they call e-consult) is $700.
The two day testing total bill was $20,000, mostly covered by insurance (except for my deductibles). That included labs, EKG, ECHO, CT chest/abdomen/pelvis, pulmonary function testing, carotid dopplers, full work by Dr Griffin (the cardiologist), consult with Dr Lytle (about 20-30 minutes I think) after all the testing was done, except for the heart cath which was done the next day. I'm sure I'm leaving something out since I told my friends if they'd done a mammogram and a colonscopy (and I guess a pap smear LOL)I'd have all my testing done for the year and then some LOL.
But for the initial I sent my cardiologist charts, my TEE tape and my most recent EKG. It took him about three weeks to get back to me saying he thought I was progressing quickly and they'd be happy to do the full work up (yeah I bet they were LOL).
If I recall correctly, the indications are different because there are multiple factors coming in to consideration. Not only is your valve calcifying because of the radiation damage, there may be other scarring and subsequent stiffening of the pericardium/endocardium that is affecting your heart function. Overall, the elasticity of your heart is decreased due to that stiffening, so the heart cannot compensate for the stenotic valve/reduced valve area in the same ways that a non-irradiated person's heart can. I remember Dr L. being very concerned about scarring and scar tissue he might encounter when he opened me up, as well as having a greater potential for pericaridal effusion and slower healing than a non-irradiated chest and sternum, because that tissue has already been "attacked" per se by the radiation.
I think I might send a copy of this to Dr Lytle and see if we can get the information from the source--he actually does answer e-mails so it might be fun to see if he answers this one. I'll copy Dr Griffin because he may be more likely to answer quickly LOL.

 

[Steve]

Carolyn -

I'd be very interested in how to contact the doctor you mentioned and pass that on to my cardiologist for consulting consideration.

I'd also like to briefly compare your Hodgkins treatment to mine so that I can get an idea of the amount of radiation you had and how they setup the blocks.

I had two courses of radiation of 4800 rads each. The first course was from the mandible to the sternum, and the second course was from the sternum to the pelvis.

The treatment was front / back each day at 90 rads each side for a total of 180 rads per day. The machine was a Clinac using photons at 13 meV.

They had lung / heart blocks for both front and back for the first course and a spinal block for the second course.

If you can remember how they treated you, I would be most interested.

I'm also interested in what the surgeon or cardiologist said in reference to the heart / valve damage they observed that may have been caused by the radiation.

Thanks,

--steve

 

[Steve]

"You will probably be counselled not to shovel snow..."

I live in New Mexico on purpose so I don't have to own a snow shovel...

 

[perkicar]

Steve/Al, I just sent you PM's with info about the cleveland clinic heart center.

 

[epstns]

Steve - Some thoughts from another Steve. I can't speak to the Hodgkins angle, as I have "just the garden-variety aortic stenosis, from a congenital bicuspid valve." I can share my experience with the diagnosis and progression of stenosis. BobH put it well, as to the progression -- I'm 57, with moderate to severe stenosis, that was diagnosed in follow-up from a routine physical about 3 years ago. My valve area, as most recently measured, is about 1 sq cm. At this point, with my 25+ years of running (now jogging), I am generally without symptoms. I do notice that over the past 5 years or so, I have less energy, and certainly less "reserve" energy for the stressful times. I am still active, usually running 4 miles/day at a 9:00/mile pace. I've slowed from my pre-stenosis 7:30 pace, but still feel pretty good about what I can do. My cardio has me on meds for mild hypertension, annual echo's and semi-annual office visits. He has only restricted me to light weights (40 lbs) with as many reps as I want, and no sports with "high dynamic range" where you go from resting to full-speed and back instantaneously. Aerobic exercise is good, other things questionable.

I'm at the point where we now discuss my surgery as "probably 2 to 4 years out" but I know that is only an educated guess, based upon the observed rate of progression over the past few years, since diagnosis.

All this goes to the point that stenosis, in itself, may be present without much restriction on your life -- until symptoms appear or until your echo measurements indicate the need for surgery. Then it is time to "just do it."

Welcome to The Waiting Room -- the virtual waiting room where many of us are waiting our turns in the OR. Ask all the questions you want -- you will probably find more useful information here than any other source, professional or otherwise.

 

[Steve]

Carolyn & Steve, thanks for the information.

Glad to hear you can still pursue your running. I bicycle because the orthopedic surgeon was kind enough to remove all of the uneeded, extra parts in my left knee (cartilige).

Carolyn, I will contact my doctors with the information & see what they say, and when needed will contact the Cleveland Clinic directly.

Thanks for the help guys.

 

[brd]

radiation

radiation

Carolyn, Steve, Al - thanks for your comments about radiation. I'm in the same boat and was interested in your question to Carolyn, Al and to your answer Carolyn. I am seeing a CV surgeon at Mass Gen this Friday and plan to ask him about the radiation implications as well as a host of other things. I will post what he has to say.

Thank you all. Barbara

 

[Steve]

Barbara -

Please post your information. I'd be most interested in what you have found out.

I have sent an email question to the Lukemia & Lymphoma Society about any studies they are aware of on long term side-effects of radiation therapy, and especially heart damage that may have been caused by the treatment.

If they give me an answer I'll post the information.

--steve

 

[perkicar]

I'll see if I can do a literature search tomorrow at work as well, to see if I can find any of the published research. Barbara, did you know that you are at a higher risk for breast cancer because of the radiation treatements? When I was diagnosed in 1990 no one made the connection between the two, but since then there have been several articles published doing retrospective studies on secondary cancers in childhood cancer survivors, both those who received radiation and chemo. Not always encouraging, but given where we'd be if we hadn't survived....guess I can live with a valve replacement.
I'll also let y'all know if/when I hear back from Dr Lytle or Dr Griffin.

 

[Mary]

I received the report from my last heart catheterization on June 6 and the surgery report from June 7.
The interesting thing was there was no mention made of valve size in either report. The heart cath used the mean arotic pressure gradient for evaluation. Mine was recorded at 54 millimeters-- severe aortic stenosis.

The surgery report said, "There was moderate cardiomegaly. There was trivial regurgitation of the valve, but severe, marked stenosis and on direct inspection, the valve was severely dysplastic. There was only one commissure observed and marked redundancy of the leaflet tissue in a somewhat narrowed orifice area."

The stenosis has been followed since 2001 (as I posted previously), but the main emphasis was always on the valve area and opening. You need to monitor your pressure gradient values in addition to valve opening size. In addition, recent articles are calling for initial classification of stenosis severity to be based on Doppler measurement of jet velocity.

Once you receive a copy of your echo, keep track of all changes and measurements, and don't get bogged down in valve area measurements.

 

[Steve]

I've done a bit of searching on oncology websites. From the information I've found, there is a direct correlation between radiation of areas adjacent to the mediasteinum and heart and/or valve damage.

This includes coronary artery disease as the radiation causes the inside of the artery to be damaged which makes the surface rough and more susceptible to trapping plaque.

One of the papers also implies that damage could be caused even if blocks were used as the blocks are not precision devices and, therefore, are not 100% effective. Some of the radiation still reaches the heart and lungs.

The trigger point for damage seems to be 4,000 rads or more.

I'll post the links when I get a chance to review the information. But, tomorrow I'm off to Grand Lake, CO for a wooden boat show.

You guys have been generous with your time, efforts, and thoughts.

--thanks,

--steve

 

[perkicar]

Response from Dr Griffin re: my explanation

Response from Dr Griffin re: my explanation

LOL, he said "nice job" so I must have done an OK job of explaining what happens and how the indications are different. I think bottom line they go more off the valve areas and the peak gradient measurements, as well as signs of left ventricular hypertrophy when they make the call. Based on my TTE done in February I had progressed (in basically 2 months) from moderate to severe aortic stenosis, which caused them to recommend my pursuing an elective replacement vs emergent if I were to start having episodes of syncope or pulmonary edema. The worst symptoms I had was the week before I went to CCF for my testing and I had climbed three flights of steps to attendin ACLS (advanced cardiac life support) classes and had not only the pounding chest with some pain but also terrible out of breath. Bad call on on my part, to let my pride (oh I can do those steps) override my better judgement (I should probabably find the elevator).

anyhoo--I have an appointment to see him on tuesday so if he tells me anything different I'll let you know.