Valves great.....new aneurysm !!!!!

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Turkey Hunter

Well-known member
Joined
Jun 11, 2001
Messages
799
Location
The Great Buckeye State
I had my annual check-up at Cleveland Clinic three weeks ago and we
have discovered that there is another aneurysm developing in the
ascending aorta and aortic arch. The cardiologist recommended it is
time for a surgical consult which my wife and I had with my surgeon
last Wednesday. The cardio's recommendation came from two years of
us seeing a slight growth in the ascending aorta. This last year it
grew 4 mm at the base of the aorta, up to 5.1 cm in that location.

The gist of the surgeon's recommendation is for me to begin thinking
through what I want done when we have to go in to fix the aneurysm.

There are a lot of options with the valves from `re-implanting' the
two that are currently in place, to a mechanical aortic and putting
my aortic (formerly pulmonary) back into the pulmonary position, to
all new tissue, or even both new mechanical. Currently, both valves
that are in place look great and are doing well. The gradient
pressures are acceptable and there is little to no leakage or
insufficiency.

In any case the aortic arch will need replaced from the aortic valve
through the arch, past the `branching' areas. It's as big as 4.5 cm
midway through the arch. Really with what the surgeon said, what has
been learned in the last few years; people with bicuspid aortic
valve disease tend to have weaker aortic tissue and, according to
him, it is becoming a standard idea and even practice with some
surgeons to replace the entire arch when performing the original
valve replacement on patients in my similar condition.

So, here I go, if we knew then what we know now, I wouldn't be
talking about anything right now except deer hunting.

He continued to say he wants me back in six months to have another
CT scan to check the size again, on top of which he wants to
get "aggressive" with my blood pressure management medication. There
is still time to begin deciding what to do when the time comes.

My sixteen year old son put it well when my wife and I told him; he
said at least we know early on this time and it's not the emergency
it was six and one half years ago.

I guess I am still some-what of a walking time bomb, just one that
has alot of time left on the count down. :) (Bad joke, but oh well.):D

Timing for the next open heart surgery to fix the aneurysm depends
totally on the growth rate of the aneurysm. It could be a soon as
next summer or even two years or so.

Anyone have any input or suggestions as to what the best option
would be for the valves since we will have to go in again.

Just begining the idea and research phase. AGAIN.

Ben


(one more thing, those of you that know me or we have mutual friends outside of this forum; I would greatly appreciate this information not going outside of this forum. I want to keep my personal health information from spreading around my work or family.) Very few people know that I am close to. My wife, my son, & my parents. Beyond that, no one knows. Thank you in advance for the confidentiality !
 
I am a little surprised they are not in more of a rush for the surgery. 5.1 at the root is a good size and is past the typically accepted size for surgery. My advice is to get it done sooner, rather than later.

I agree with them about people w/ bav at the very minimum discussing replacing the ascendign aorta if they are already going to replave the valve.

too many people have to go back.

sorry, i dont have any good info on the valves.

mike
 
Oh Ben--Gosh-

What terrible news. You sound fairly upbeat, but I know you must be pretty upset. I'll be thinking of you and your family. Fortunately, you have a great background of knowledge, and can research exactly what would be right for you.
 
ShezaGirlie said:
Just want you to know Ben that I'm thinking about you...one of my favorite people in the whole wide world..

Thank you, young lady.

Mike C said:
I am a little surprised they are not in more of a rush for the surgery. 5.1 at the root is a good size and is past the typically accepted size for surgery. My advice is to get it done sooner, rather than later.

Dr. Pettersen says that since I have already had OHS the tissue that has developed around the vessel will help stabalize the anerysm. But he also told me to what my physical excersion.
But I do agree that trying to wait more than a few months may be asking too much.

One thing to realize is that I am a very large and large framed man. I am 6' 6" and not the standard stick pole at that size, 'bout 275#. It was a topic of conversation between myself the cardio and surgeon as too what is a standard size to have the "it is time to intervene" conversation for a person of my physical stature. 5.1 is something to pay attention to, but is it the time for me or can or should we wait.
I am comfortable with waiting 6 months and going from there.

Nancy said:
What terrible news. You sound fairly upbeat, but I know you must be pretty upset. I'll be thinking of you and your family. Fortunately, you have a great background of knowledge, and can research exactly what would be right for you.

Again, just like last time. I don't have much of a choice to keep a positive attitude. Kids and family depend on me to be there for them.
I have my moments. I choose to have them when no one is around.


But honestly, I had a feeling that something wasn't right. I can't explain the feeling. I just knew something was wrong inside.

Ben
 
Dang Ben. You already know my recommendations, so I'll spare you there. Reason being weaker tissue. I get to go next month for my new annie check up in my abdomen. Mine isn't nearly as frightening as yours though.
 
You'll be remembered in my prayers as you mull over and make your decisions. You seem to have a very realistic view of what is going on and what you need to do. I wish you peacefulness and calmness as you sort through all this. Bless your son for seeing it in a positive light, for it is a positive thing that they have been able to keep an eye out on you and give you up to date information. You already know that heart surprised aren't usually good.
 
Ben,

I have recently been Dx with BAV and ascending aortic aneursym(5.0cm). This will be my first OHS operation. My surgeon, Dr. S. Raissi, stated the surgery is necessary ASAP, but has said that I could wait for a couple of months if I wanted too. He did make aggressive BP management a requirement mandatory even before I left the hospital (I was there for my consultation.) I have choosen to have the procedure on Jan. 9, 2007, and not immediately because I have plans to get to together with my family for the holidays. The surgeon saw no problem with this request. But to answer your question I would elect to have the procedure done early rather than later. Hope everything goes well.

Todd
 
I'm sorry to hear this, Ben. I'm sure not as sorry as you are.

I don't know the full circumstances, but I would sure like to keep that Ross if it were me. I'd get a real Ross pro to do it.

Best wishes,
 
tobagotwo said:
I'm sorry to hear this, Ben. I'm sure not as sorry as you are.

I don't know the full circumstances, but I would sure like to keep that Ross if it were me. I'd get a real Ross pro to do it.

Best wishes,

I'm sorry to hear the news as well Ben (and a bit shocked as well :( ). As a fellow Rossian I have always followed your progress and have been hoping I will reach that "magic 5 year milestone" like you did. I guess that just proves that there are no guarantees in life. My question is...is there a surgeon that can repair/replace the ascending aorta and aortic arch without having to explant your aortic valve since you said the valve itself is in good shape? Whatever the outcome I'll be thinking of you and wishing for the best possible outcome, whatever you decide.
 
tobagotwo said:
I don't know the full circumstances, but I would sure like to keep that Ross if it were me. I'd get a real Ross pro to do it.

That is my first choice Bob. At this juncture, keeping the Ross is exactly what I want. Just keeping all of my options open and preparing myself for whatever may come of thissituation. I avoided mechanicals valves the first time around like they were a disease. I do not have the feelings towards mechanical valves and ACT as I did 6 1/2 years ago. That is not saying I want to jump in and have two of them either.
First choice is keeping the RP as long as things inside are in a condition thatthat the RP can stay. If not, I need to option two and three and even four ready and have the surgeon aware of my wishes.

Bryan B said:
I'm sorry to hear the news as well Ben (and a bit shocked as well ). As a fellow Rossian I have always followed your progress and have been hoping I will reach that "magic 5 year milestone" like you did. I guess that just proves that there are no guarantees in life. My question is...is there a surgeon that can repair/replace the ascending aorta and aortic arch without having to explant your aortic valve since you said the valve itself is in good shape? Whatever the outcome I'll be thinking of you and wishing for the best possible outcome, whatever you decide.

The first option discussed by Dr P and I was to re-implant the existing valves in the positions they are in. My understanding of that is for him to just make any improvements to the ioriginal implantation of those two valves.


tdrother said:
have recently been Dx with BAV and ascending aortic aneursym(5.0cm). This will be my first OHS operation. My surgeon, Dr. S. Raissi, stated the surgery is necessary ASAP, but has said that I could wait for a couple of months if I wanted too. He did make aggressive BP management a requirement mandatory even before I left the hospital (I was there for my consultation.) I have choosen to have the procedure on Jan. 9, 2007, and not immediately because I have plans to get to together with my family for the holidays. The surgeon saw no problem with this request. But to answer your question I would elect to have the procedure done early rather than later. Hope everything goes well.

Todd,
Be sure to question your surgeon as to how much of the aorta he is replacing. From what I have read and what my surgeon has stated, a replacement of the entir arch may be something you need to have; at minimum your surgeon would need to explain whay he wouldn't be replacing more than just the immediate area affected by the aneurysm.
Remember in medicine they learn new techniques and new information on a monthly even daily basis. If a full arch replacement now will eliminate the possibility of you being in my position in 5 or 10 years, then you will be a step ahead of me.

Karlynn said:
You'll be remembered in my prayers as you mull over and make your decisions. You seem to have a very realistic view of what is going on and what you need to do. I wish you peacefulness and calmness as you sort through all this. Bless your son for seeing it in a positive light, for it is a positive thing that they have been able to keep an eye out on you and give you up to date information. You already know that heart surprised aren't usually good.

Thank you very much. The prayers and positive thoughts are much appreciated. Knowing early is a better feeling than the last time I went through this.


Ross said:
Dang Ben. You already know my recommendations, so I'll spare you there. Reason being weaker tissue. I get to go next month for my new annie check up in my abdomen. Mine isn't nearly as frightening as yours though.

The 'weaker' tissue has been a very provoking thought; however, I have great trust in Dr. P and will follow my instructions of not overexerting myself.
I hope your check-up goes well Ross.

Just gives me an excuse to have someone else drag my deer out of the woods. "Would be too much excersion for me". I can make the boy do it.



Thank you to each of you for your kind words and prayers. Please remember my son in those prayers. He is too much like me and will try to hide his true feelings and/or fears.
 
Ben,

My thoughts and prayers are with you my friend. Know that we are your friends and that you can count on us to stand with you.
Keep us updated.

God bless,
 
hi ben,
i was so sorry to read your post and i could actually feel your feelings through your words as i read them.
i've always looked to you and read your posts with great interest since you are one step/year(?) ahead of joey with this procedure. naturally, we are always rooting for you...

your son is sooo right. you are one of the lucky ones. we/you are here because you were fortunate enough to be saved by this miraculous surgery (whether ross p., mechanical or just plain tissue valve)... it's a life-saving procedure that many folks in this lifetime don't get in time, or never knew about their condition, etc.
your son's so wise for his young years.

i'm not saying that makes it easier though. please know that you are in our thoughts and prayers in a very big way...
would you consider contacting another ross surgeon and just "chat" about the choices, etc.?

we wish you a happy and healthy thanksgiving along with your family.
all the best and please keep us posted,
sylvia
 
Christina said:
Ben,

My thoughts and prayers are with you my friend. Know that we are your friends and that you can count on us to stand with you.
Keep us updated.

God bless,
Thanks Christina. I appreciate your kind words.

sylviayasgur said:
hi ben,
i was so sorry to read your post and i could actually feel your feelings through your words as i read them.
i've always looked to you and read your posts with great interest since you are one step/year(?) ahead of joey with this procedure. naturally, we are always rooting for you...

your son is sooo right. you are one of the lucky ones. we/you are here because you were fortunate enough to be saved by this miraculous surgery (whether ross p., mechanical or just plain tissue valve)... it's a life-saving procedure that many folks in this lifetime don't get in time, or never knew about their condition, etc.
your son's so wise for his young years.

i'm not saying that makes it easier though. please know that you are in our thoughts and prayers in a very big way...
would you consider contacting another ross surgeon and just "chat" about the choices, etc.?

we wish you a happy and healthy thanksgiving along with your family.
all the best and please keep us posted

You are absolutely correct, each of us here are very lucky for every minute we had past our valve replacements or our OHS. It is all life saving and I have enjoyed my life much more since my RP.

As far as speaking with another surgeon, yes I am open to discussions with any surgeon who may have some input or thoughts.
However, Dr Pettersen is highly reccomended by many cardio's as to one of the great re-op guys. He has done some of the more complicated re-do's on the books. Our own RCB and Joanne Bos are just two great examples.

If you or anyone has anysuggestions on other surgeons to speak with, I am open for your oppinions., and willing to go that route if it 'feels' to be the right path.

Thanks.

Ben
 
hi again,
the only other person i would talk to about this would be dr. stelzer.
he seems to be another surgeon who is proficient at doing rosses.
maybe he'll have some input? he might even just tell you that you are in the best of hands and that dr.p is the one to do this. who knows?
i know dr. stelzer will often come to the phone himself or will return calls personally.

Paul Stelzer, M.D.
Beth Israel Medical Center
11th floor
317 E. 17th Street
New York, NY 10003
212-420-2584
fax: 212-420-2321
[email protected]

i don't mean to be "pushy" but i just thought you might want to do this.
if you are totally comfortable with dr.p and his choices, i'm the first to tell you to go with him.

you are so strongly in our thoughts and prayers. we are here if you need anything.
be well,
sylvia
 
Ben shocks like this I don't want to hear at all, much less while I am on a trip. However news doesn't wait for anyone, does it. I will be following your progress as I have been doieng for six and a half yrs now.
 
Ben,

As you know, we have the GREATEST faith in Dr. P. He is a fine gentleman with tremendous skill and compassion.

We will be in contact with you and your family privately!

Our thoughts and prayers have been with all of you this Thanksgiving.

John & Joann
 
Hi Ben,

Wishing you well during your decision process....and forward. I am confident you will make a proper choice when the time is right.

Take care.
 
Hello Ben, I can only imagine how you are feeling about this. Just wanted to drop you a line and let you know you are in my thoughts. And I am wishing you all the best. and IMHO probably better to do it sooner rather than later!
 
Hi Ben

Hi Ben

I have been reading your posts.....Didn't want to post anything..but now, after others have posted..just wanted to say....You mentioned 1 day ago..about your size...6'6 and 275 lbs. and You said something about..time to intervine on your phyical statue....... I was afraid to post..because..that was the exact same height/weight as my wonderful B/I/L's size...when he had a dissection of his aneurysm...16 years ago..at the age of 51..with no symptoms.....He told my sister, he was having bad heartburn......Small hospital thought so, too..Died 24 hours later..Even, tho, they took him to larger hospital..when they found out what was really wrong.:( and tried to save him with the operation...I really hate to bring this up...but..praying that you will have a better outcome. ..Times have changed so much..I am sure your doctor's are on top of things......Again..didn't mean to bring up bad stories.Bonnie
 

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