Surgical Consult Part 3 :)

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Bryan B

Bryan B

Well-known member
Joined
Jan 16, 2004
Messages
1,898
Location
NC
I am going to have a consult with a Duke surgeon (that is where I always have gone) who specialized in disease of the aorta. He has scheduled me to have a CT scan with contrast before seeing him. I saw the surgeon who replaced my original surgeon who took a job at Children's Hospital in Denver early this year 2 weeks ago and he recommended I see this surgeon. He was a fellow under my original surgeon when I had my Ross Procedure in March of 04. Still waiting on some governmental agency or Duke (who has a hardship program) to come through with some assistance. Basically I need surgery as soon as I have funds approved or wait until I become "emergent". I hate that word.

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

Aortic root measured 5.4cm at top end of root on 11/9/10
Surgical Consult 11/19/10 pretty obvious he said I need surgery
Still waiting on a decision from SS disability so I can get financial help
Newest symptom periodic chest pain
 
Bryan, I'm very sorry about your unenviable situation. I hope the stars allign for you quickly. The only advice i can offer is, if you haven't already, it may be time to retain an aggressive attorney for the disability process.
 
Had surgical consult part 3

Had surgical consult part 3

I had a CT scan with contrast this morning and then met with the surgeon who specializes in aortic disease. He said that the CT scan with contrast is the gold standard for measuring aortic dilation and aneurysms.

Ascending Aorta in lower half: 5.1cm but normal in upper half

Aortic Root: 5.8cm!!!

He said if I have financial assistance he would want to do the surgery immediately after the holidays. He said he is going to make some calls and tell them that this financial assistance issue needs to be put on the fast track. He said my aortic root will not dissect...if it goes it will rupture and there are two scenarios. If it ruptures into one of the heart chambers I am a dead man. If it ruptures into a different heart chamber (don't remember which chambers) I will go into acute heart failure and will have a very short time to get to a hospital and have emergency surgery.

He highly recommends I get a mechanical valve since there will be a dacron sleeve sewn onto the valve. I asked him about a tissue valve (which I was leaning towards) and percutaneous replacement he said he believed it would be a routine procedure by the time I needed it replaced but the fact that I would have the dacron sleeve would be a complicating factor. I asked him about the Onyx valve and he said they are supposed to be coming out with a pre-sewn on sleeve in January and even if they didn't it was no big deal to sew one on. He is one of the surgeons involved in the Plavix/Aspirn study and has installed several Onyx valves.

He also said that they no longer recommend the Ross Procedure for any adults. He said even if they put a preventative dacron wrap around the aortic root that is no guarantee that it will prevent aortic root dilation or ascending aorta aneurysms.

Just thought I would share some interesting information from a Duke surgeon that is an expert at disease of the aorta.

All I want for Christmas is a mended heart. :)
 
Wow, what a lot of news there for you, Bryan! I hope the surgeon is successful in pulling the right strings so you get your fast-track.

And thank you for sharing all of that interesting and current (bicuspid) information there! I never thought that a dacron sleeve might be a "complicating factor" for a person considering a percutaneous valve in the future but it certainly makes sense. Interesting too how the thinking has really turned around about the Ross procedure. About a dozen years ago, cardiologists I saw really insisted that was the best route for me to go; and now the thinking may be entirely different. It seems the "knowledge" about bicuspids has changed dramatically in the past dozen years also, and yet there are still so many unknowns.

Please keep us posted. Best wishes :)
 
Bryan, a heart felt WELCOME to our OHS family glad you are getting the information that you are seeking and there is swealth of knowledge here for the future .....
a list of acronyms and short forms http://www.valvereplacement.org/foru...s-and-Glossary

what to ask pre surgery http://www.valvereplacement.org/foru...t-of-questions

what to take with you to the hospital http://www.valvereplacement.org/foru...al-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/foru...House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

As to Norms comment with the speed in Canada I agree as mine was under a week for Mitral ring abd CABG x 5
 
the way I understand it.. if the rupture happens inside of the pericardial sac, you die pretty much right there... if the rupture happens outside of the sack, you have a some time.
 
Bryan,

Hoping/praying you get that mended heart for Christmas (or shortly thereafter). Sounds like you got an accurate picture of what's going on. Hopefully the Duke surgeon can pull some strings and get things proceeding for you.
 
Greg a said:
Bryan, a heart felt WELCOME to our OHS family glad you are getting the information that you are seeking and there is swealth of knowledge here for the future .....
a list of acronyms and short forms http://www.valvereplacement.org/foru...s-and-Glossary

what to ask pre surgery http://www.valvereplacement.org/foru...t-of-questions

what to take with you to the hospital http://www.valvereplacement.org/foru...al-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/foru...House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

As to Norms comment with the speed in Canada I agree as mine was under a week for Mitral ring abd CABG x 5
Click to expand...

Greg,

Thank you for the warm welcome and all of the information. I am not trying to embarrass you but I have been a member here since January of 2004. :D :D :D

But I really do appreciate you kindness and please keep welcoming new members because I am not here as much as I used to be. We need people like yourself to keep carrying the torch that helped me when I first got here.

Sincerely,

Bryan
 
Duff Man said:
the way I understand it.. if the rupture happens inside of the pericardial sac, you die pretty much right there... if the rupture happens outside of the sack, you have a some time.
Click to expand...

Duff Man,

That sounds like he explained it. He called it chambers but he may have been talking about inside versus outside the pericardial sac. Thanks for the info.
 
Superbob said:
Bryan,

Hoping/praying you get that mended heart for Christmas (or shortly thereafter). Sounds like you got an accurate picture of what's going on. Hopefully the Duke surgeon can pull some strings and get things proceeding for you.
Click to expand...

Bob thanks buddy for your prayers. I can honestly say that as of right now I am more scared of not having surgery than having surgery. I thought I'd never say that...lol.
 
Lily said:
Wow, what a lot of news there for you, Bryan! I hope the surgeon is successful in pulling the right strings so you get your fast-track.

And thank you for sharing all of that interesting and current (bicuspid) information there! I never thought that a dacron sleeve might be a "complicating factor" for a person considering a percutaneous valve in the future but it certainly makes sense. Interesting too how the thinking has really turned around about the Ross procedure. About a dozen years ago, cardiologists I saw really insisted that was the best route for me to go; and now the thinking may be entirely different. It seems the "knowledge" about bicuspids has changed dramatically in the past dozen years also, and yet there are still so many unknowns.

Please keep us posted. Best wishes :)
Click to expand...

Lily,

Thanks for the well wishes and I always like to share any new info I get from my cardios or surgeon. One thing...I didn't have a bicuspid valve. I had a normal valve but with a VSD, AI, and BE. I chose the Ross Procedure because I thought it would give me the best chance of avoiding surgery without anticoagulants. I was wrong...lol. But I am sure this information is just as relevant for bicuspid patients. Ascending aortas can dissect or rupture...aortic roots pretty much just rupture.
 
Bryan,
I am also adding my continued best wishes and prayers for you to receive a newly mended heart (if not for Christmas) for the New Year.
Thinking of you,
 
As much as your consult showed some serious numbers, at least it should get the wheels turning so that you
can have surgery before something nasty happens.
Wishing you some good news soon.
 
Bryan,
Well now I guess you found something to do--get ready for surgery! Let's hope they can make this thing happen soon, so get those ducks lined up now and pack your toothbrush.
Best,
John
 
HI, Bryan-
Sounds like you have a good plan and a great surgeon with a good plan. My surgeon studied at Duke and used to do Ross procedures, too, and now he is very pro-On-x.

PLEASE take it easy between now and January. Be a couch potato. You are allowed.
 
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