Cleveland Clinic first office visit report

[MarkG]

This past Thursday I was in Dr Stewart?s office at the Cleveland Clinic to discuss my valve problem due to radiation. When I finally got the opportunity to ask the question ?When??, he said one to three MONTHS. Well those words seemed to stick in the air then all that came out was $&#*. I knew I needed surgery, but I thought it would be 5 to 10 YEARS. Now don?t get me wrong, I am finally happy that someone seems to understand my predicament. I really did not like to hear from my local Cardiologist, ?your stenosis really does not explain why you can?t complete a stress test? (which is why I went to Cleveland). Also when my Cardiologist said that I can?t ride bikes anymore, that made me depressed. Now I know I can get back on the trails by next fall and that makes me happy. So I am ready for the surgery in the next few months and looking forward to no longer being a cardiac cripple.

I am glad that took the time to go to the Cleveland Clinic to talk to a specialist in radiated hearts. Any of you who have radiated heart syndrome, please talk to a specialist in that area.

 

[dj/utvolsfan]

Mark,
Hey! I have a question for you. I am in remission from Lymphoma. Just finished up my six rounds of chemo. My question is this.....does the type of radiation used today still cause radiation heart syndrome? I guess the reality of my situation is that I will come in and out of remission...hopefully with many years in between....but I know radiation is a possibility down the road so I am a tad bit curious.

Just another comment......I went to Dr. Stewart about a year ago and truely respected the man and his honesty. I knew surgery was sooner than later....I went from no date on the horizon to asap. It is shocking. You have a super great attitude. It really helps to look beyond the surgery into the much more active life you will be able to live.

My best to you and one more thing....in my opinion.....you've come to the right place!

Happy Holidays!
Debbi

 

[MarkG]

The radiation I had was 33 years ago. It was directed at my chest and neck. The direct radiation is what is causing the heart problems. I know there are several on here who had radiation to the chest area with very similar stories. One connection we have is most of us had Hodgkin?s. Others who have more recent experiences with radiation can discus if it still causes problems. But if they are on here, the answer is it still can cause problems. The key is the port of entry. If the radiation goes over your heart, expect the possibility of some damage.

I agree with your assessment about Dr Stewart. He is very straight forward and willing to sit as long as it takes to answer all questions. He also explained in english exactly what is going on and why it is happening. Big plus.

Good luck to you.

MarkG

 

[ALCapshaw2]

Mark G. wrote: "The key is the port of entry."

Mark,

Please elaborate on this point. It is of GREAT interest and concern to me as I face my 3rd OHS, this time for MVR, following AVR and CABG.

I would also be interested in any other / additional information you received about what and how radiation damages the heart.

I have asked Dr. McGiffin at the University of Alabama to do my next surgery as he has demonstrated way more knowledge and understanding of Radiation Damage than anyone I have seen previously.

'AL Capshaw'

 

[susieq14]

Mark,

So glad that you got a second opinion and you are at peace with it. I would imagine hearing you need surgery sooon is definitely startling but the alternative ( i.e. sitting in the waiting room not knowing how bad your heart is being damaged and not being able to live the life you love) is downright frightening. I wish you well and continued peace as you proceed through these next few months preparing for your surgery.

Take Care!
Susie

 

[MarkG]

Al,

My understanding of port of entry is where radiation enters the body. In my case and I believe yours, the port of entry is chest and neck. When I had radiation, it was full radiation from sternum to base of my neck. Now I have heard that radiation is more pin-point where it is needed. So the heart may be spared now days.

Now, what Dr Stewart said, radiation to the chest can damage 7 items that affect your heart function. They are the pericardium sack, valves, arteries around the heart, heart muscle, lungs, thyroid gland, and the esophagus. It affects everyone?s heart function differently. For instance, my pericardium sack and heart muscle are fine, but my values and arteries have damage. Fortunately the others sustained little or no damage. He also went on to say, any of these can go bad at any time. So it took me almost 30 years for my heart problems to arise. Also, my arteries are fine now, but now I have to get an AVR. Also my mitral value is slightly damage, but working fine. That may come up in the next 10 years. So it is all a waiting game. We just have to keep ourselves in good shape so we can handle the next big surgery.

Good luck with your surgery.

MarkG

 

[ALCapshaw2]

Thanks for the details Mark.

Yep. It's like watching dominoes fall in Slow Motion!

I had MI, AVR, and now MVR coming up.

MV wasn't "bad enough" to justify replacement at time of AVR but deteriorated over next 4 years. Neither Valve was 'on the radar' at time of CABG. Bottom Line 3 OHS!

I did see where one member (forgot who, maybe even you), was told by his surgeon that he would consider doing BOTH valves at once, even though his MV was not yet 'severe', just to avoid having another OHS.

It seems that MOST surgeons would not take that position, at least not in the recent past, and NOT MINE (I asked, after the fact).

'AL Capshaw'

 

[brd]

Mark, Thanks for the details. I had radiation 43 years ago as a young teenager and I now have severe AS and mild MV damage. I have not had surgery yet and see my cardio at Brigham and Women's Hosp in Boston every six months. I've had one consult with a surgeon at Mass General who said that though there was some damage to the MV he would not replace both unless it were warranted at the time. If I had to have the MV replaced later he would consider using a lateral, non-sternotomy, approach to avoid some of the post-radiation re-op issues.

It sounds like you are in expert hands at CC. I wish you well.

Barbara