radiation damage

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K

katie1234

Well-known member
Joined
Jun 5, 2007
Messages
85
Location
New York, NY (my mom lives on Long Island).
Hi, I was wondering if anyone had any experience or info about radiation damage as it relates to valve replacement. My mom is a 55 year old woman who was successfully treated for cancer via aggressive radiation in the the early 1970s. The radiation used at that time was apparently much stronger and less targeted than that which is used to treat cancer today. Thirty years later, she has a list of medical problems resulting from the radiation damage. The most pressing of these problems is that her mitral valve and her aortic valve need to be replaced pretty soon (she is going to meet with the surgeon for the first time this week, but her cardiologist went over the results of her most recent echocardiogram with her yesterday and says it is pretty much go-time). Her doctor told her that there are increased risks for patients who have radiation damage undergoing valve replacement, but he didn't elaborate (my mom was pretty devastated hearing that she had to have the valve replaced, so she wasn't exactly up to asking lots of questions yesterday). Does anyone have any experience with radiation damage?
Thanks so much. Also, it is really helpful to read all of the posts on this site. Lots of brave people.
 
Hang in there Katie, Al Capshaw is one person that comes to mind. When he sees this, I'm sure he'll reply.
 
Welcome, Katie.

There are a few members who have had valve damage due to radiation so I am sure you will hear from them. In the meantime, look around and ask questions. Many of us can help with general surgery/recovery questions and just lend an ear or send a hug.
 
Phyllis said:
Welcome, Katie. While you are waiting for some answers from our members who had valves replaced as a result of radiation damage, you might find some answers and help in this thread: http://valvereplacement.com/forums/showthread.php?t=17825&highlight=radiation+damage
Best wishes to you and your Mom and please keep coming back and keeping us up to date on your Mom's progress.
Click to expand...

Before getting into details, Katie, your mother needs to know and BELIEVE that even though this is Major Surgery, it is a LIFE SAVING Surgery that many of us have SURVIVED to go onto useful and productive lives

WOW ! GREAT FIND Phyllis !

That thread just about covers everything I would want to say in response to Katie's questions.

One thing I would like to add is to also see the STORIES section (on the VR.com Home Page). Look for Johnny Stephens Story under "2 Valves". He is also a Radiation Survivor.

Katie, probably the MOST IMPORTANT thing for your mother to do is to find a Surgeon who has EXPERIENCE with Radiation Damaged Hearts. If she has to travel to a Major Heart Hospital to find that experience, I would urge her to do so.

Third, given that her cardiologist has already identifed damage to BOTH the Aortic and Mitral Valves, I would pursue the option of replacing BOTH Valves during the same surgery.

My Mitral Valve was heavily calcified at the time of my Aortic Valve Replacement but the Mitral Valve leaflets were 'freely moving' so the surgeon did NOT replace it. Three years later, my Mitral valve had deteriorated but finally stabilized just above the Severe range. Eventually I will need to have it replaced also.

Please tell us where your mother lives. Perhaps someone can recommend a Surgeon or Hospital in her region of the country.

After you digest all of this information, I recommend forwarding or copying it to your Mother. You might even suggest that she join our group if she has internet capability.

As our 'Grand Dame' (sp?) says,
"Never Give In and Never Give Up"

'AL Capshaw'
 
Heart Hospitals

Heart Hospitals

OOPS! I just saw the note that your mother lives on Long Island.

Two excellent Heart Hospitals in Boston are Mass. General and Brigham and Women's Hospital.

Nancy (and others) are more familiar with good heart hospitals in New York.

The Cleveland Clinic is the #1 Rated Heart Hospital and Dr. Lytle is their Radiation guru.

(see U.S. News & World Report for Hospital Ratings)

------------

Regarding Valves, it is generally recommended that Mechanical Valves be used for Radiation Patients since they are designed to operate way longer than a single lifetime.

The Standard St. Jude valves are the Gold Standard for Longevity with an excellent 30 record of durability.

The On-X Valves (10 years in service) offer significant engineering improvements in Fluid Dynamics with lower potential for clot formation and less damage to blood cells. See www.onxvalves.com or contact [email protected]

Catheran Burnett is the education and promotion manager for MCRI, manufacturer of the On-X valves, and a former Heart Surgery Nurse at Baylor. She has also worked for St. Jude and Carbomedics so she really 'knows her stuff' about heart valves.
 
Hi Katie, I am another of the post radiation damage crowd, close to your mother's age. I have not yet had surgery so don't have a lot to offer in terms of recovery experience. I have gotten a lot of encouragement from the members here whose names have been mentioned though! you will too.

I would add two names to the list of surgeons who seem to have significant post radiation valve replacement experience. They are Gus Vlahakas at Mass General in Boston and Hartzel Schaff at the Mayo Clinic in Rochester Minn.

It must be great for your mother to have such a concerned and involved daughter.

Stay in touch....there's a lot of support here.

Barbara
 
Hi Katie - I was treated for Hodgkin's in 1980. I received 8 weeks of radiation to my head, chest, and abdomen. It worked!

As your mother is now also experiencing, I experienced "late effects" from the radiation. My oncologist at the time was sure they'd found a good way to cure my particular cancer, but was also clear that they had no idea what the long-term effects would be. So I went into it with my eyes wide-open (at least as open as a 21-year old newlywed can get them).

In 2002 I underwent double valve replacement of the aortic and mitral valves. I sought out the top valve surgeon in Seattle, which meant jumping through a few hoops with my insurance, but I'm glad I did because it likely saved my life.

My surgeon told me right up front that it was mechanical valves or nothing for me - he anticipated heavy scarring and calcification on the valves, and guessed that the technical challenges for my 1st surgery were more along the lines of a 2nd or 3rd operation for someone who had no radiation.

This all proved to be true. I did have some post-surgery complications, but I believe those were mostly due to that fact that I was a lot sicker going in than any of us realized. Please keep that in mind if you read my story per Al's note above.

In the end, having 2 valves replaced has been no different for me than 1 would have been.


I hope this helps, please feel free to PM or emal me if you need more input.
 
Thank you so much

Thank you so much

Wow, thank you so much to everyone! This has been really helpful for my mom and I. She is going to join this forum later today, and this weekend we are going to get together and research the experts on radiation damage in the New York area. I'm pretty sure she is willing to travel, though, if need be. Knowing that other people have gone through this stuff and are doing so well is very encouraging and really helps tremendously as we start this process. Really can't thank everyone enough.
 
meeting with a surgeon tomorrow

meeting with a surgeon tomorrow

My mom and I are going to meet with the surgeon that her cardiologist referred her to tomorrow. Based on what people have been saying here though, and other things I have been reading, I am not sure that he will be our guy. For one, we don't know yet if he has any experience treating radiation-damage patients, and two, he is a local long island surgeon at a local hospital (Winthrop Hospital, which is a great hospital- but not sure if it is "OHS great", etc.) In any case, we will see what he has to say, and continue trying to find someone in the NY area who has expertise in radiation damage.
 
katie1234 said:
My mom and I are going to meet with the surgeon that her cardiologist referred her to tomorrow. Based on what people have been saying here though, and other things I have been reading, I am not sure that he will be our guy. For one, we don't know yet if he has any experience treating radiation-damage patients, and two, he is a local long island surgeon at a local hospital (Winthrop Hospital, which is a great hospital- but not sure if it is "OHS great", etc.) In any case, we will see what he has to say, and continue trying to find someone in the NY area who has expertise in radiation damage.
Click to expand...

That sounds like a reasonable plan. Be sure to ask how many Radiation Damaged Hearts he has operated on, what were his outcomes, and how many radiation damaged patients are seen per year at that hospital. Note that even some of the Big Heart Hospitals only see a couple of Radiation Damaged patients per year.

If he has little experience with radiation damaged hearts, ask if he knows of a more experienced surgeon. That may help shorten your search time and effort.

Please keep us posted and feel free to ask any questions as they come to mind.

'AL Capshaw'
 
1st opinion: surgery this month

1st opinion: surgery this month

The surgeon we met with this morning, Dr. William Kokotos at Winthrop University Hopsital on Long Island, said that he thinks my mom should have her mitral and her aortic valves replaced within the month. He said he has a lot of experience with radiation damaged patients, and that he has the lowest mortality rates/highest success rates of any heart surgeon in NY state. We are going to meet again next week, and I will ask him the specific questions that Al suggested (thank you for that). In the meantime, my mom needs to have some pulmonary function tests, and she is going to meet with her cancer doc at Sloan-Kettering in NYC on Tuesday to see if he can recommend anyone and to get some info on other patients of his who may have had the same thing.

I was pretty surprised that Dr. Kokotos said that he had a lot of experience with radiation damaged patients. It was my understanding that you folks are a rare breed :) When I asked what kinds of special considerations there are for radiation damage patients, he didn't seem to think there really were any. He said that he expected that there would be more fibrous tissue in the valves than he would normally expect, but he said that as far as risks and possible complications, it would be the same as for any other valve disease patient. Although I am not an expert at all, I am kind of skeptical of that.

So we want to get a second opinion, but at the same time, my mom has developed symptoms, moderate pulmonary hypertension, and a patent foramen ovale, and Dr. Kokotos advised us not to wait much longer than a month or she may risk permanent damage to her heart and/or lungs.

One last thing: he recommends bovine tissue valves- I thought the consenus on double valve replacement was that you should go with the mechanical? Does anyone have any info on that?

Thanks again everyone.
 
VERY interesting... and Confusing...

Bottom Line:

I would definitely seek a second opinion from another surgeon with experience replacing Radiation Damaged Valves.

NOTE that I sent you a Private Message with more details which you can find by clicking on "Private Message" in RED in the upper right corner of this page.

'AL Capshaw'
 
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