Hodgkins Disease and Calcified Aorta from Radiation Treatments

[bbbdirector]

It has taken me almost a year to follow through with the comment I posted about a year ago - I wrote:

" I will contact John Hopkins Hospital tomorrow because I have a copy of all of the test results you mentioned. I am wondering - I was told my the surgeon in DC that the main problem other than all the calcium buildup is "the radiation damaged my aorta - and they can not perform the valve replacement the normal way (cut through the aorta to replace the valve)because the aorta is bone hard because of the calcium." Have you heard of that before or do you know of anyone who had the same problem?"

because of fear.

I now have an appointment with Dr. Duke Cameron at Johns Hopkins on January 14th. I am still concerned about the calcified aorta. Has anyone here ever been told that your aorta was calcified or hard as a rock and it was too hard to cut through to get to the aortic valve - and even if they found a soft spot to cut through - that when the clamp was released after surgery - calcium deposits could break off, go through my blood stream and cause multiple strokes - even blindness. This what the cardiologist told me!

How were your fears relieved about this? I was okay with getting surgery a year ago until I heard about this problem.

 

[kpearse]

Good luck with appointment at JH. I was told my aortic was bicuspid and calcified. I was never told it would be hard to cut through. My Doctor did say after the operation that he was shocked at how much my valve was calcified. Like I said, Good luck!

 

[ALCapshaw2]

bbbdirector -

My Private Mailbox is overloaded so I sent an e-mail to you through VR.com IF you do not receive it, let me know on this thread and I will find a way to get it to you.

In the meantime, you may find some more information by doing a search on VR.com and Google for "porcelain aorta". It CAN be dealt with IF your surgeon knows what to do. You may also want to see if you can find any papers written by Dr. Bruce Lytle of the Cleveland Clinic on Radiation Damage to the Heart. He is their Radiation "guru".

'AL C'

 

[Maryka]

Duke Cameron is now the head of the Cardiac Surgery Dept. at Johns Hopkins (since the day after my surgery--I like to take credit for it!). I imagine he has experience with this condition, though the other recommendations you got here sound good. There must be a way! Please keep us posted!

 

[Michellemar]

Bbdirector.....I hope there are some updates, I just got here, and having had Hodgkins radiation porcelain aorta is a possibility...my dr has said also that bits of calcium could get by in surgery, but they would have a catch mesh for that.
I am posting 15 mos after you, so I hope it went very well!!!