Looking For Advice!

[RobinH]

Hi Everyone,

I'm Robin...47 year old woman from NH. I was diagnosed with aortic stenosis about 9 years ago after the doctor's detected a heart murmur. At that point, it was still in the mild-moderate category. The docs think my AS is a result of chest radiation treatments I received when I had Hodgkin's lymphoma when I was 19 years old. I've been monitored annually since my diagnosis and, while the AS progressed somewhat every year, it was still in the moderate category as of Aug. 2007. The cardiologist told me that I eventually would have to have the aortic valve replaced but that was probably 10-20 years down the road.

Two weeks ago, I had a scary episode of atrial fibrillation and ended up in the ER. I was in a-fib for 3 hours (heart rate up to 185) and finally came out of it with a big IV dose of cardizem. A follow-up echo revealed my AS has moved into the severe category. Here are my stats: mean gradient-51 mmHG, peak gradient-85 mmHg, aortic valve area-.51 cm2, moderate regurgitation. My left ventricular chamber size is normal and my ejection fraction is 65-70%.

I met with my cardiologist a few days later and he says that surgery is probably within the next year and he wants to do a follow-up echo in 3 months. I am pretty much asymptomatic so that is why he doesn't want to do surgery immediately.

I've been thinking about my situation and, although I am not classically symptomatic, I do think I display some symptoms. Obviously, the a-fib could very well be the result of the AS. Sometimes when I am exercising, I get little "flashes" of lightheadedness and feel like I'm going to pass out but it goes away in a few seconds. I always thought it was an inner ear problem but I guess it could possibly be related to the AS. Also when exercising, I sometimes feel my throat tightening and it feels like my heart is beating in my throat.

I am extremely active...go to the gym 5 times a week and do pilates, weight training, treadmill walking and, up until two weeks ago, spinning. (the cardiologist has told me to lay off the spinning because it's too much exertion...bummer).

Anyway, I'm seeing the cardiologist next week for a quick follow-up. I feel like I should tell him I want the surgery asap because I really don't see the advantage in waiting for more classic symptoms to develop. If it's got to be done within the next year, why not do it now while I'm in good shape and relatively healthy????

It seems like you all are very knowledgable based on your experiences and I would appreciate any advice you could offer!

Thanks!

 

[geebee]

Welcome Robin.

Glad you found your way here.

You do sound fairly symptomatic to me. I agree that it makes more sense to have surgery before any permanent damage is done and episodes of a-fib indicate your heart is unhappy. Things will not get better on their own as you know.

Cardiologists tend to be more conservative when deciding the timing of surgery. Meet with a surgeon and you will probably get things moving pretty quickly - they like to operate on healthier hearts.

Best of luck to you and let us know how we can help.

 

[bvdr]

Hi Robin and welcome to this site. There are a number of us who have a history of radiation treatments similar to what you had done. Your aortic valve is really tight and I think you are experiencing pretty significant symptoms. If it were me, I would back off from the gym and start thinking of finding a surgeon. Don't wait until you are in an emergency situation to have surgery but do it while you are still doing well. The cardiologist can't fix you so you need the surgery consult NOW.

 

[Susan BAV]

Hi Robin - Welcome to the site; glad you found it. There are a few or several members here who have faced valve issues for a reason similar to your own and I'm sure they will see your thread and reply soon. Your aortic valve area measurement is very tight--no wonder you are displaying symptoms! Hope all goes well for you. Take care and post again.

 

[Phyllis]

Welcome, Robin. You have already received all good advice and I concur. You should start researching which surgeon you would like to use and then seek his opinion and even a second or third if that makes you more comfortable.

 

[Superbob]

Hi Robin, and welcome to the forum. You can be free of symptoms and still be at a point you need the surgery before damage is done. I agree with others, it sounds like you are having some possible symptoms. I would get another opinion -- wouldn't hurt to scout out a good surgeon and ask for his opinion.

Personally, I would ease off on the exercise, too. Nothing too strenuous right now. You can build back into it after surgery, with cardiac rehab and other gradually increased exercise.

 

[Cooker]

Robin....Welcome to the zoo!......Sounds like the others have given good counsel.....wishing you the best

 

[Marguerite53]

Welcome to our wonderful community.

Like you, I was waiting for a long time for things to change with my AS. I dawdled in the 1.0 cm sq. range for the aortic valve size for quite awhile. I was very impatient to get the surgery done. My cardiologist kept waiting. Finally I asked her at what point she would refer me to a surgeon. She said, when symptoms increased (hello! they seemed pretty strong to me.....MUCH like yours do) or when your valve decreases to .7 cm sq. Well, in 2006, December, the echo revealed a .7 measure. Suddenly, coincidentally, I had 2 other minor procedures that needed doing...a first time colonoscopy and then a needle biopsy for a nasty little thing that then needed removing from my breast. This delayed my surgery until April. By then I was at .53 cm sq.
(we have somewhat of a saying around here...when it starts to go down, it can go down much faster than it had been moving previously... the closer it gets, the faster it goes)

The surgeon was ready to do things back in that December. The 2 anesthesiologists who had to deal with my little procedures were NOT happy to have to put someone under in the severe category of AS! That, in and of itself was frightening for me.

But as you can see, I'm here. 2 years out and doing great. Tissue valve, renewed life. Fantastic!!!!

So please (and I'm going to beat Al Capshaw ;o) to the caps so forgive the community humor here) IT'S TIME TO SEE THE SURGEON!!

If you are ready, and you honestly have your valve type chosen (this is a huge decision you have to make -- tissue or mechanical) and the timing in your life is good to have several weeks off (like 6) and several months to feel normal (as in thinking completely straight, put back together, etc... 6-8 months) you really, really should get the opinion of a surgeon. He'll want to go in...I'm sure. After all HE is going to be doing the work. Shouldn't he be able to advise you when the optimum time is? He doesn't want a patient who is gasping for air every day or suddenly in an emergency situation. You don't want to suddenly find you have other "work" to do on yourself and put the really big thing off too long. .51......that's tight, honey!!!!!!!

So get a referral from your cardiologist to "consult" with a surgeon. There's no need to wait a minute longer just for a consult. See what he has to say. You may want to get a second opinion ( I did, just to do it, and stayed with my original guy who was referred by my cardio and in my prreferred plan) then do that, too.

Keep posting. We are a plethora of information here! And support!

You're gonna do great, seeing as how you're in such remarkable shape and seem to have a very level headed attitude.

Best wishes!

Marguerite

 

[Jkm7]

Welcome, Robin. Sorry for the reason you found us but happy you did.
Your valve will not get better; only worse. Most of us here have found once they start to go bad, they go bad fast. That is what happened to me. I was mild/moderate and stable and then I wasn't. I progressed very quickly despite careful monitoring by a caring cardiologist.

Seeing you are so near to Boston with our excellent heart centers, I would suggest you begin researching surgeons at Mass General or Brigham or Women's. They are both rated extremely high on Business Weeks annual listing of country's best. IMO, it is better to have done that sort of research and consulting at a leisurely pace now rather than possibly under stress for speed at a later date.

You have a remarkably great attitude and seem to be handling this situation well. Your physical conditioning is huge in terms of your ease going through and recovering from the surgery. My doctors all stressed my easier time handling my second OHS was definitely due to healthy lifestyle....exercise/diet etc (My first was done in an emergency state, in crisis situation.)


Good luck and please know we care here. Most of us have been through this either ourselves or with our loved ones and only those who have been there can really understand.

 

[ALCapshaw2]

Welcome to MY World Robin !

Your Cardiologist sounds like an "Old School Cardio" (i.e. wait for symptoms to confirm that DAMAGE has been done). He also seems a bit 'clueless' about Valve Disease.

Many / Most Cardiologists and Surgeons recommend Aortic Valve Replacement when the Effective Area of the Aortic Valve is 0.8 sq cm or less. (That's when I was sent for AVR!)

Your Ejection Fraction seems to be in the "High Normal" range which can be a sign that your heart is compensating for a Stenotic Vavle. Another 'trigger' for recommending Surgery.

We have over a dozen Radiation Damaged heart / Valve Replacement Survivors in our membership. I am one of them. Most of us received Mechanical Valves (which virtually never wear out) because of increased risks in repeat surgeries which would be required with tissue valves that wear out in 20 years or less (faster in younger patients, under age 60). See www.onxvalves.com and www.heartvalvechoice.com for info on the latest in mechanical valve design.

Dr. Lytle, now Head of CardioThoracic Surgery at the Cleveland Clinic (#1 rated Heart Hospital), reported a year or so ago to the Society of CardioThoracic Surgeons that Radiation Treatments to the Chest often begin to show up as Heart and Valve symptoms about 20 years post radiation treatment. Dr. Lytle is often referred to as the "Radiation Guru" at CC.

Bottom Line: It is time to go Surgeon Shopping NOW.
I suggest you go to Boston (MGH or Brigham and Women's Hospital) which are both highly rated Heart Hospitals.

FWIW, One of our members, "HarryBaby" also lives in NH and is constantly complaining about the quality of Heart Care he receives in NH.

'AL Capshaw'

 

[catwoman]

Also when exercising, I sometimes feel my throat tightening and it feels like my heart is beating in my throat.

You're symptomatic. I had that feeling many times and I thought it was "normal," just "nerves."

I've never asked my cardiologist what that sensation is called. I'll ask him June 24 when I have an echo.

 

[RobinH]

Wow! I asked for advice and, boy, am I getting it! I am overwhelmed with the words of advice and encouragement from all of you. I am so happy I stumbled upon this forum!
I will keep you all updated about my situation. I meet with the cardiologist on 6/17 and I will definitely be assertive about getting a referral(s) to a surgeon.

 

[Marguerite53]

Wow! I asked for advice and, boy, am I getting it! I am overwhelmed with the words of advice and encouragement from all of you. I am so happy I stumbled upon this forum!
I will keep you all updated about my situation. I meet with the cardiologist on 6/17 and I will definitely be assertive about getting a referral(s) to a surgeon.

Good girl!!!

Looking forward to hearing about your meetings!

Take care.

Marguerite

 

[upchurch131]

Wow! I asked for advice and, boy, am I getting it! I am overwhelmed with the words of advice and encouragement from all of you. I am so happy I stumbled upon this forum!
I will keep you all updated about my situation. I meet with the cardiologist on 6/17 and I will definitely be assertive about getting a referral(s) to a surgeon.

There is some connection between heart valve patients and having strong opinions!

 

[Ana]

Hello Robin!

If you are looking for anecdotal information, my husband was in a similar situation. He had radiation and chemo 15 years ago, which is what the surgeon and cardiologist suspect may have led to the deterioration and eventual replacement of his mitral valve.

He ran into a complication post-surgery which was ascribed to that cancer treatment - he bled more than was expected. From what I was told, radiation treatment can result in making the blood vessels less pliable and so it takes longer for incision sites to close up. In Carl's situation, this resulted in the ICU having to push blood products for a few hours post surgery to keep up with the flow. When/if he has to have the valve replaced, this is something we will be mentioning to the surgeon (if Douthit is, regrettably, not available) as an "Oh, by the way....".

As for your situation, I am on board with everyone who urges you to schedule a follow-up with your cardiologist regard to your concerns. Good luck!

 

[ALCapshaw2]

Robin,

As you have probably already gathered, surgery for Radiation Treatment Survivors is 'more complex' than for 'normal' first time patients.

It really is best to seek a surgeon who has EXPERIENCE with Radiation Treatment survivors. If your local Cardio can't / won't refer you to an 'expert' at one of the Major Heart Centers, you can SELF REFER.

Just call either MGH or Brigham and Women's, tell the operator you are looking for a CardioVascular Surgeon with experience treating Radiation Damaged Hearts and hopefully they will give you some names.

Then call the office(s) of those surgeons, tell them you have Severe Aortic Stenosis caused by Radiation Damage and all they will want in the way of a referal will be copies of your latest Echocardiogram and (hopefully) angiogram (i.e. heart catheterization with imaging). From that point on, it's you and the surgeon.

Be SURE to ask any/all Surgeons you interview about their experience dealing with Radiation Damaged Hearts. You don't want to waste your time with someone who has never seen a Radiation Damaged Heart.

'AL Capshaw'

 

[RobinH]

Ana and AlCapshaw,

I had no idea that my sugery would be more complicated due to the radiation treatments. That makes me even more nervous about my situation. Thanks for the info.

 

[Ana]

Ana and AlCapshaw,

I had no idea that my sugery would be more complicated due to the radiation treatments. That makes me even more nervous about my situation. Thanks for the info.

Honestly, I don't know how much more it complicates your surgery, if at all. But it IS something of which you need to make your cardiologist and surgeon aware. If you have a skilled surgeon who has done many of your type of surgery, my guess is that he has heard of this. In fact, I think it's pretty much common knowledge in cardiology and CV-T surgery that certain types of chemo tx and radiation causes valve damage.

I wouldn't worry more about this if I were you, but it is something I would discuss with the surgeon and make sure he knows you are concerned.

I also want to make clear that even if I don't view this as something you should panic over, I am in no way dismissing your anxiety or concerns. Hugs and prayers to you.

 

[WayneGM]

Welcome to VR.com. You have already received some good advice and I don't have anything to add. I just wanted to welcome you. Glad you found us.

 

[tobagotwo]

I sometimes feel my throat tightening and it feels like my heart is beating in my throat.

This is a classic angina type. Mine was usually an uneasy tightness at the top of my throat. A similar angina sensation is described as the feeling you get when you breath cold air after running. Another is pain in the jaw (common in women, who are sometimes referred to cardiologists by their dentists). The more publicized ones (they look better on film) are the left side of the chest and the left arm (clutched fiercely, with expressions of agony crossing the actor's face).

We are our own worst measures of symptoms. We tend to ignore them, discount them, or make them up.

Best wishes.