Aortic Stenosis post Radiation Therapy?

[perkicar]

I'm a 47F who was told approximately 15 years ago that I had a murmur. Over time the murmur grew louder, until 3 years ago I saw a cardiologist who immediately scheduled a cardiac cath and told me that I had aortic stenosis. After doing some research I found that aortic stenosis post radiation treatment (mine was for Hodgkin's Disease when I was 21) isn't uncommon.
I had a TEE 2 weeks ago and will probably be having my valve replaced in the next 6 months. My valve area is just over 1 cm2, and my diagnosis on my report is "severe aortic stenosis".
I just found this forum and hope it will be able to answer questions and give me some guidance through the maze of information as I make my choices. I'm hoping to find a surgeon who does the minimally invasive procedure. I'm a nurse and can't really afford to be off work for too long, plus having watched surgeries I must admit I'm a little creeped out at the thought of having my chest cracked open.
Carolyn Perkins Louisville KY

 

[epstns]

Hi Carolyn, and welcome to vr.com and The Waiting Room. There are many of us here still awaiting our own valve surgeries (I'm one of those. . . ), AND there are several members here who have had experiences similar to yours. It won't be long before someone who has had radiation treatment and the resultant valve problems will check in.

In my case, I'm just an "ordinary" guy, mid-50's with moderate aortic stenosis. Mine has been brewing, like yours, for a long time, but I wasn't aware of it until the murmur was noted in a routine physical a couple of years ago. Big shock! Then I found this site, and the people here (we call 'em family) have helped me so much to understand my situation and what is likely to be the future sequence of events as it evolves.

So, keep asking questions -- most of the answers are here in words we mortals (as opposed to doctors) can understand. The voices of experience speak loudly and clearly to those of us in The Waiting Room.

Welcome!

 

[bvdr]

Hi Carolyn,

Welcome to this board. I'm an RN too and let me be the first to tell you that you are going to learn more applicable information here than you will anyplace else including textbooks.

We have several here who have also had radiation therapy due to Hodgekins. I had it back in the 60's when I had whooping cough. It is never used for that anymore. However, it seems most of my heart damage was from rheumatic fever except for a couple of ostial lesions in my coronary arteries.

I had my mitral valve replaced last year but I do still have some aortic valve problems....stenosis (1.4cm) and aortic insufficiency. I am hoping it is years before I have to face having that dealt with. I did have my MVR with a heart port procedure so I did not have my sternum split. I think the minimally invasive is becoming more common but the minimally invasive part is all on the exterior. The invasive part into the heart remains the same.

Plan to spend the time here and I think you will find every bit of it well spent. In the Reference forums you will find a wealth of information.

 

[Phyllis]

Hi Carolyn,
Minimally invasive surgery is still cracking the sternum, but it is a 3-5 inch incision instead of the whole sternum. Kind of like getting hit by a mac truck instead of a 16 wheeler. My husband had it done at Brigham last year and he never felt any pain from the incision, just back pain which we were told was from the position they have you in during the operation. It's almost a year now and it has healed nicely. They do it at Cleveland Clinic and at Brigham Woman's in Boston and I think at Duke and some hospitals in New York. I'm sure other forum members will jump in with more info. They will not do it if it turns out that you also need bypass.
Welcome to the forum and don't hesitate to come back with all questions as they arise. There's a wealth of information and lots of support here!

 

[RayinSF]

Hi Carolyn,

I had aortic valve replacement surgery July 12th of this year. I also had radiation treatments for Hodgkins.{1974} All my docs are sure this is what led to the stenosis. Welcome, by the way!
~Ray

 

[matiberio]

Just joined up.

Had Hodgkins when I was 17 years old, back in 1972. Had 3800 REMS (200 REMS per day for 19 days). 55 now and my Docs and I have been watching rapidly deteriorating Aortic Valve (from 1.5 to .8 cm^2 in 2 years). Cardiac Cath last Thursday also showed 2 Coronary Arteries at 80-90% blockage. So It looks like AVR and multiple bypasses for me...

I'm looking forward to feeling better...

Avid motorcyclist, so I'm probably going porcine...

 

[rckrzy1]

I was severe , less than 1.0cm for more than 2 years. Normally they wait till less than .7 .6 unless you have major symptoms.

 

[ALCapshaw2]

Just joined up.

Had Hodgkins when I was 17 years old, back in 1972. Had 3800 REMS (200 REMS per day for 19 days). 55 now and my Docs and I have been watching rapidly deteriorating Aortic Valve (from 1.5 to .8 cm^2 in 2 years). Cardiac Cath last Thursday also showed 2 Coronary Arteries at 80-90% blockage. So It looks like AVR and multiple bypasses for me...

I'm looking forward to feeling better...

Avid motorcyclist, so I'm probably going porcine...

Welcome to our World!

We have over 20 Radiation Treatment Survivors with Valve Replacements. You can find their posts by doing a Search on VR.com (see the Blue Line at the Top of the Page and selecting "Any Date" in the option box in the lower left corner of the Advanced Search box) for keywords "radiation" and/or "Hodgkins".

I asked my Surgeon to implant a Bovine Pericardial Tissue Valve because it has the Longest proven Life Expecatancy for Tissue Valves and I was hoping to avoid Coumadin.

He agreed. When I 'came to' he informed me that he implanted a St. Jude Mechanical Valve and warned about another replacement.

I recommend that you find a surgeon who has Experience dealing with Radiation Damaged Hearts or at least a surgeon with Considerable Experience with the Scar Tissue cause by previous surgeries. Such surgeons are typically only found at Major Heart Hospitals. This kind of surgery is WAY over the Experience Level of most Local Bypass Surgeons.

You may also want to do a Search (on VR.com and Google) for "Porcelain Aorta" which is a common condition caused by Radiation to the Chest. Basically the Aorta turns to stone. Another Radiation Survivor recently posted that patients with a "calcified aorta" need an 'unconventional' placement of the Aortic Valve (presumably because it is virtually impossible to sew a valve into a 'calcified aorta').

MY impression is that Radiation Damaged Hearts have ONE shot with Valve Replacement (at each site). This would be a Good Question to ask a surgeon with the Experience to KNOW the answer.

Dr. Bruce Lytle is the "Radiation Guru" at the Cleveland Clinic (#1 rated Heart Hospital) and has written papers on the subject of Radiation Damage to the Heart.

'AL C'

 

[ALCapshaw2]

There is another recent thread in the HeartTalk Forum that may be of interest to Radiation Treatment Survivors under the heading of "Met with Surgeon - has anyone experienced an Aorta Replacement? " posted by "bbbdirector".

She discusses what seems to be a new approach to AVR in patients whose Aorta has been 'hardened' by Radiation Therapy.

'AL C'

 

[Luana]

From Phyllis:
"Minimally invasive surgery is still cracking the sternum, but it is a 3-5 inch incision instead of the whole sternum. Kind of like getting hit by a mac truck instead of a 16 wheeler."

I had minimally invasive AVR surgery in November. Incision was about two-and-a-half inches between the ribs on the right side of my chest, a few inches down from my collar bone. The sternum was not touched.

I have nothing to compare it to, but I can't help but think it was far less painful post-surgery than any kind of sternotomy since no bones were broken.
Luana

 

[ALCapshaw2]

Technically, the Sternum is Not Broken during a Sternotomy, it is CUT with a small Circular Saw.

MOST patients little actual Pain from the sternum,
more likely just various levels of 'discomfort'.

(Back and/or Shoulder) Muscle Pain from the positioning is a more common complaint. Muscle Pain is typically best relieved by MASSAGE which is usually Faster and More Effective than Pain Medications.

That said, it Does take 6 weeks for the Sternum to heal back to 80% of it's normal strength and another 6 weeks to reach 100%. And that takes a LOT of Energy from the body which is why patients feel so tired and listless during the first 6 weeks post-op.

'AL Capshaw'

 

[dtread]

I was in a bicycle accident about a year before my sternotomy, and went flying over the handlebars and landed on my shoulder and part of my back. I went to the hospital to make sure my collarbone wasn't broken (fortunately it wasn't, I was lucky). But my chest was really sore afterwards; i.e., more sore than after the sternotomy. I could not do any kind of sit-up type motion for at least a week or two. I must have torn some muscles beneath the breastbone or something. I actually rigged up a rope to my dresser so I could pull myself out of bed. However, I was not anywhere near as wasted or listless as after the OHS.

The IV drip during and after the surgery added up to about 20 lbs of water weight. That's about 2.5 gallons of IV fluid. I think the IV fluid, combined with the effects of the anesthetic, all the medications, plus the loss of blood during and after the surgery just makes one truly wasted. I ended up having to get a transfusion of one pint on day 4 in the hospital (I hadn't received any blood during the operation). I think a lot of the need for the transfusion was all the blood draws that were taken after the surgery.

Additionally, just being in bed all day makes one tired. There have been studies that show that even a few days of bed rest causes one to degrade.

Sure, a sternotomy is hard on the body. But there are a lot of other factors as well.

 

[drivetopless]

I'm in the waiting room, too. I had a 1.0cm2 diameter for 13 years with no symptoms. Then about 1 year ago it suddenly reduced to .7cm2. If you're not having symptoms yet, maybe you can wait a little longer. Either way, this forum in invaluable for info and support. I love you guys!

 

[Luana]

Technically, the Sternum is Not Broken during a Sternotomy, it is CUT with a small Circular Saw.

MOST patients little actual Pain from the sternum,
more likely just various levels of 'discomfort'.

(Back and/or Shoulder) Muscle Pain from the positioning is a more common complaint. Muscle Pain is typically best relieved by MASSAGE which is usually Faster and More Effective than Pain Medications.

That said, it Does take 6 weeks for the Sternum to heal back to 80% of it's normal strength and another 6 weeks to reach 100%. And that takes a LOT of Energy from the body which is why patients feel so tired and listless during the first 6 weeks post-op.

'AL Capshaw'

Yes, I know the sternum is cut, poor word choice on my part; however, my point was, whether cut or broken, it was one less thing needing to heal after the surgery. I've talked to several people who said the sternotomy incision was the most painful part of their recovery.
Luana

 

[river-wear]

Hi Luana,

Where did you have your surgery done? I've heard of MVR the way you describe but didn't know it was possible for aortic valve replacement. It does sound like recovery would be better that way.

 

[Luana]

Hi Luana,

Where did you have your surgery done? I've heard of MVR the way you describe but didn't know it was possible for aortic valve replacement. It does sound like recovery would be better that way.

Hi Michele,
Surgery was at Long Beach Memorial Medical Center in Long Beach CA and surgeon was Dr. Daniel Bethencourt.

Luana

 

[jdonati]

Hodgkins Disease

Hodgkins Disease

I had Hodgkins when I was 19, in 1976. I am now 56 and have had a lot of long term effects. I have always been extremly athletic, ( I continued to race cross country skiing and then national level cycling during and after cancer radiation ) and even now I compete as a senior in cycling....just finished the senior national championships!
Yet, no one told me what to expect for any long-term effects of my cancer! I had to have my thyroid removed 8 yrs ago and I have had 2 stents put it...now I am struggling a lot with what I think is my aortic valve. I know I have a heart murmur...What my symptoms are is breathlessness on going up steps or a steep uphill. And, in the last 2 summers the heat and humidity here in Houston have killed me, I have really struggled with dizziness and fatique training. I did a 45 mile bike training race on Sun and after 30 miles I had to sit I was so dizzy....I am not sure if this is from my valves or simply dehydration....although I was hydrating a lot...
Anyway, I am going back to my cardiologist to check my valves. My lungs are compromised a bit, but they have been excluded as the cause of my breathlessness and dizziness at the top of stairs. You would think, with all my training, that stairs would not wear me out so...it really doesn't make any sense to me. And, the stair business happens year round although it is exaserbated in the summer. Anyone have any thoughts? I do believe that my regular intense exercise has always helped me overcome my deficiencies from Hodgkins....but perhaps this can't be helped.:frown2:
Julie Donati
Houston, TX

Just joined up.

Had Hodgkins when I was 17 years old, back in 1972. Had 3800 REMS (200 REMS per day for 19 days). 55 now and my Docs and I have been watching rapidly deteriorating Aortic Valve (from 1.5 to .8 cm^2 in 2 years). Cardiac Cath last Thursday also showed 2 Coronary Arteries at 80-90% blockage. So It looks like AVR and multiple bypasses for me...

I'm looking forward to feeling better...

Avid motorcyclist, so I'm probably going porcine...