Aortic stenosis and radiation therapy

[jorge_f]

Hi All,

I am new to this forum and I am looking forward to learn from people in similar situation and share experiences.

I have been diagnosed with aortic stenosis, possibly induced by the radiation therapy for Hodgkin's disease that I had 32 years ago when I was 23 (I am now 55). I am told I am going to need valve replacement eventually. I am also told that the surgery may not be straightforward due to radiation-damaged tissue. Since I am for now fully functional and not at immediate risk the doctor wants to monitor me for a while before scheduling the surgery. I trust my doctor but I fear he might not be as experienced in cases like mine. I would like to get a second opinion from somebody who has seen many cases of radiation-induced stenosis. Where to go? Are there any recommendations from people with similar problems? The Houston area would be convenient, but I am flexible.

Many thanks in advance!

Jorge

 

[Sarah_Louise]

Hi Jorge,
Welcome to the boards, i personally can't help but i'm sure someone will be along soon
Love Sarah xxxx

 

[beth3nyc]

Hello,
I saw your post and I was also treated for Hodgkins when I was 19. I am now 43. I am going in next week for a double valve replacement. I am followed at a long term survivorship program at Memorial Sloan Kettering in NYC and there are many cases like yours. I was diagnosed with my valve issues 10 years ago. I have been doing well after my child was born until this past year, when I became more symptomatic and my echo/ stress test showed a greater degree valve insufficiency. I saw several Drs in the NYC area when first diagnosed and all of them told me that they would not take a non symptomatic person to the operating room. I think your Dr's strategy of monitoring you and waiting is the accepted protocol. Be sure you follow up regularly and that you report any changes in how you feel to your dr. right away. Coronary Artery Disease is also a very common side effect of long term radiation and I would suggest asking your Dr about testing you for that also. I don't have any recommendations for Houston but you could call Memorial Sloan Kettering and ask the long term survivorship program if they have any recommendations in Texas. Dr.Oeffinger is the Dr who leads the group and the team there is lovely.
Good Luck to you,
Beth

 

[bosshog]

I too had Hogdkins. I had it when I was 27, am now 51. Was treated with radiation only. I Was diagnosed with aortic stenosis early March 2011, had valve replacement end of March 2011. They weren't sure if it was caused by the radiation, but found I had a bicuspid valve. I never had major symptoms until i passed out at work and hit the floor Jan 2011. My surgeon was concerned with my radiation treatments causing problems with healing and such. After surgery he told me it looked like I'd never had any treatments at all, everything looked totally normal.
I healed up very quickly, was back at work in 7 weeks. I had my surgery in Little Rock, would recommend them to anyone.

 

[jorge_f]

This is a follow-up to my own post. I thought it might help people in similar situation.

After almost a year of struggling with increasingly alarming symptoms (shortness of breath, dizziness, fainted on one occasion), my local doctor seemed still reluctant to put my up for surgery since he thought this might be very risky due to my radiation history.

I did not want to end up in the ER and be operated upon by a surgeon I did not choose, so I decided to look for a second opinion at the Cleveland Clinic, supposedly the number one clinic in the US for these issues. Low and behold, after undergoing multiple tests, they recommended surgery within weeks

So I underwent AVR surgery at the Cleveland Clinic on January 8. I was given a bovine valve that will last for 10-15 years (I am 56). I was told that when the time comes they will insert a new one inside the old one percutaneously. This is a technique that is experimental right now but is expected to become standard in 10-15 years.

The only complication of the surgery (very common as they told me, particularly in people having had radiation) was fluid build-up on my lungs, which was taken care of by "tapping". Stayed five days in the hospital, I have been out two weeks and feeling great.

The surgeon was Dr. Svensson, one of the very best in the country, as I understand it. He has done many cases of radiation-induced stenosis and is one of the leaders perfecting the new percutaneous techniques.