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

[francie12]

So sorry to read this... I've followed your posts since I first arrived on this site a couple of years ago, with a probable Ross procedure in the cards for my son. Here's hoping that a surgery, if/when needed, will go smoothly and be the last one you ever have to think about.

 

[Lisa in Katy]

This isn't great news, but at least you will be better prepared this time. Any chance they will be able to do minimally invasive instead of the whole chest-splitting thing? When my brother had his aortic valve replaced almost 14 years ago, they put in a mechanical with the root attached. Is this what the doctor is thinking when he is talking about what to do with the valves? Is it possible to replace the root with a tissue valve, or must it be mechanical?

 

[Turkey Hunter]

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

Thanks for the info Sylvia.
You are not being pushy, I welcome all opinions. I have every intention to talk to a couple other docs prior to having any procedure done. Stelzer was one I was thinking of contacting, you have just made it easier.
However, I am very confident in Dr. P. He is an amazing surgeon, but multiple opinions are a good thing. You never know what one surgeon may have ideas about compared to another.

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.

You are right Ann, news, whether good or bad does not wait for our timing. It comes when it wants too.
I didn?t want to hear about it either.

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

Thank you for the well wishes for Thanksgiving. I trust yours was well.
I also have a lot of faith in Dr. P. he knows his stuff and is very forthright with his opinions and recommendations.

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.

Thank you. I plan on gathering as much info as possible to be able to make that right choice.

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!

You are correct that sooner is better than later; however I do not want to rush to any decisions. There is a lot of information to process.

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

Bonnie, thank you for sharing that story. I can only imagine how hard it is to even speak about it; but I appreciate the input.
I have always wondered what real symptoms of aneurysm?s are!!!???

So sorry to read this... I've followed your posts since I first arrived on this site a couple of years ago, with a probable Ross procedure in the cards for my son. Here's hoping that a surgery, if/when needed, will go smoothly and be the last one you ever have to think about.

I am still very PRO Ross Procedure. When you are the correct candidate and you are in the right hands (surgeon wise) you are making the best choice that is available at this time in history. We all hope better options are coming soon, but no one knows if or when and new advances will be available. The RP is the way to go, if you meet all the qualifications.
BTW, I hope this will be the last one too!!

This isn't great news, but at least you will be better prepared this time. Any chance they will be able to do minimally invasive instead of the whole chest-splitting thing?

I have not read or heard of being able to replace as much of the aorta as is being discussed with me by any means other than OHS. I have heard before of going in through the back for aortic work just below the arch. That wouldn?t work for me, we want to get an up close and personal look at the valves while we are in there. I am, at this point, hoping that the tissue valves will be able to be re-implanted and be left with my Ross.

When my brother had his aortic valve replaced almost 14 years ago, they put in a mechanical with the root attached. Is this what the doctor is thinking when he is talking about what to do with the valves? Is it possible to replace the root with a tissue valve, or must it be mechanical?

I have both mechanical and tissue as options (on top of the re-implanting) .
One option mentioned was in fact a mechanical that already has the new aortic arch attached to it. I kept Dr. P very busy with my questions last week. We spent quite a bit of time in his office. Almost an hour and ½. He was late for a procedure when we left.

 

[Christina L]

Ben -

Ben -

Sorry to hear the news that you will need a reop. People here have given you a lot of good advice. I wish you all the best in your decision making. I hope you had a wonderful Thanksgiving despite the mental turmoil I'm sure you are in.

Christina L

 

[Susan BAV]

...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.

Hi Ben -
Really sorry to read all of this. I can sure relate to this quote of yours. When my bicuspid was frying, I really felt strongly that I was dying. As soon as I got the new valve, I didn't feel that way anymore -- even without all the morphine.

Your bravery does so much good for your family. And the control you are keeping over yourself is beneficial in many ways. Makes me think of Proverbs 14:30(a): "A calm heart is the life of the fleshly organism..." Science has proven that to be more than figurative, but literal too.

Hang in there. We're all of us pulling for you and your family.

 

[geebee]

Ben,

You will be in my prayers. I hope things get fixed on your schedule and everything goes perfectly.

 

[Guest]

Ben,

Just sending you thoughts/prayers that your researching leads to the best procedures and the best results for you.

Still very sorry I missed you (along with John and Joann) during my trip to PA this past August.



Cort:33swm."Mr MC" / "Mr Road Trip".pig valve.pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"Enough is enough, I can't take anymore" ... Alabama ... 'Can't Keep A Good Man Down'

 

[PegB]

Hi Ben,

So sorry to hear of your recent discovery. You know though that those fine Drs. at Cleveland Clinic would not keep you hanging if they felt you were in immediate danger. Sounds like you have a lot of options to consider, and I sometimes think the best question for the Dr. is....."If you were personally having this procedure, what would you do?"

Your son is right...you know so much more this time, and know what to expect and what to look out for. We are all on this site because of the miracles of modern science, and the fact that our bodies gave us warning signs, and we heeded them.

You'll be in my thoughts and prayers.

 

[Turkey Hunter]

Sorry to hear the news that you will need a reop. People here have given you a lot of good advice. I wish you all the best in your decision making. I hope you had a wonderful Thanksgiving despite the mental turmoil I'm sure you are in.

Christina L

Thank you; but honestly I don?t consider it a re-op?..more of a new operation for a new problem. And yes, usually we all get good advice here.
I trust your thanksgiving was good as well.

Your bravery does so much good for your family. And the control you are keeping over yourself is beneficial in many ways. Makes me think of Proverbs 14:30(a): "A calm heart is the life of the fleshly organism..." Science has proven that to be more than figurative, but literal too.

Hang in there. We're all of us pulling for you and your family.

Each of us who have faced anything major in our lives (especially surgery) understands that we as the patient have to show the rest of our family that we are OK with everything going on, even though there are times we just cuss and yell (when no one is around).
But, Honestly, it hasn?t hit me really hard yet. Yes, I have my times where I am angry to even have to be discussing this; but for the most part I kinda was expecting to get news that wasn?t what I wanted to hear. Just didn?t know what news I would get.
Its amazing how we all have our own intuition, that gives us clues to problems if we pay attention.

You will be in my prayers. I hope things get fixed on your schedule and everything goes perfectly.

Thank you.

Just sending you thoughts/prayers that your researching leads to the best procedures and the best results for you.

Still very sorry I missed you (along with John and Joann) during my trip to PA this past August.

Thank you and there?s always next time you are through this area.
I?ll be here.

I sometimes think the best question for the Dr. is....."If you were personally having this procedure, what would you do?"

I asked that very question last time and will be continuing to put the docs ?on the spot? by asking it this time as well. You can always tell when a man is being honest with you; just keep watching their eyes.
And I have always received very honest answers from my docs at CCF.

Your son is right...you know so much more this time, and know what to expect and what to look out for. We are all on this site because of the miracles of modern science, and the fact that our bodies gave us warning signs, and we heeded them.

You'll be in my thoughts and prayers.

He?s a good boy. His mother has done a wonderful job fixing all of my screw ups while we raise him together. Lol
Modern medicine is amazing.
And that you for the prayers.


Thank you to each of you for your kind words and thoughts and prayers.

Ben

 

[Mary]

Ben,
I've read your posts with great interest, and I have been impressed with the amount of time Dr. Petterson has taken to discuss the various options which will be available when the time arrives for the surgery.

While we were home for Thanksgiving I had reason to think about my mother's brother. More than 30 years ago he traveled to Texas to have DeBakey operate on his aortic aneurysm. He did not survive the surgery, but he didn't expect to. I think about the progress that has been made in the course of 30+ years, and how it continues to evolve at an amazing pace. I am thankful for the research and advances made when I consider BAVD and its connection to my immediate family, and also my own experience with it.

It has become less frightening the more I learn and and read about each of our experiences. I am more confident that I can face the future with a given amount of equanimity. So please accept my thanks for sharing your circumstances and thought process, and know that you will remain in my thoughts as you resume the journey down this particular road many of us are traveling.
Best wishes,
Mary

 

[Sherry]

Ben, you and I are both old timers on this site, so I've followed your story for awhile now. Knowing in advance will give you the time you need to research this carefully, and that's got to give you some small measure of relief. My thoughts, prayers, and cyberhugs to you go through this process again.

 

[Guest]

Thank you and there?s always next time you are through this area.
I?ll be here.

You are welcome, Ben. And, yes, there IS always a next time.... After all, I'm always traveling to PA at least once a year in August .

 

[temp69]

Ben: You will be in my prayers today, I wish you all the luck and healing power I can muster! keep a good outlook!

 

[Turkey Hunter]

Ben,
I've read your posts with great interest, and I have been impressed with the amount of time Dr. Petterson has taken to discuss the various options which will be available when the time arrives for the surgery.

While we were home for Thanksgiving I had reason to think about my mother's brother. More than 30 years ago he traveled to Texas to have DeBakey operate on his aortic aneurysm. He did not survive the surgery, but he didn't expect to. I think about the progress that has been made in the course of 30+ years, and how it continues to evolve at an amazing pace. I am thankful for the research and advances made when I consider BAVD and its connection to my immediate family, and also my own experience with it.

It has become less frightening the more I learn and and read about each of our experiences. I am more confident that I can face the future with a given amount of equanimity. So please accept my thanks for sharing your circumstances and thought process, and know that you will remain in my thoughts as you resume the journey down this particular road many of us are traveling.
Best wishes,
Mary

You are very right. The advances made in this "industry' are amazing. I never new my paternal grandfather; he did in the farm fields SW of Columbus, Ohio when my father was 13 years old. All we know is it was something to do with his heart or vascular systme. We assume he had a similar birth defect that I have. he was only 35 years old. I've yet to make it to that age; but plan on doing so !!!

Ben, you and I are both old timers on this site, so I've followed your story for awhile now. Knowing in advance will give you the time you need to research this carefully, and that's got to give you some small measure of relief. My thoughts, prayers, and cyberhugs to you go through this process again.

Old timer. WOW, I havn't been called that by anyone but my son's wrestling teammates. I guess it's true though. lol
Yes, it is a bit of a relief to have more time to look into all of the options. Yet even though I had minimal time last time around; I still believe I made the best choice for what was available to me.

I'm sorry, Ben, for the news. Best wishes for a happy outcome as you work through your options. I know you will play it smart.

We can't control the "news" that we get; all we can do is deal with it the best we know how.

You are welcome, Ben. And, yes, there IS always a next time.... After all, I'm always traveling to PA at least once a year in August .

See ya then.

Ben: You will be in my prayers today, I wish you all the luck and healing power I can muster! keep a good outlook!

I'll take all the prayer i can get. Thank you.

 

[CathyK.]

Ben - just now getting to read your post. So sorry to hear about your news. I am on the opposite end of the spectrum when it comes to the body. I am 5'5" and weigh 105 lbs. and my Cardio also told me that the normal measurment would not be normal for me.
Sending you prayers and your family as well!! Hang in there. Did you get a deer? My youngest son got a little doe..

 

[901]

Hi Ben,
My surgery was driven by the aneurysm. When it was identified, it was 5 cm and I was getting CT scans every six months. One time I went in and the CT scan showed that the size had changed to 6 cm. The Card called me while I was driving home to tell me I needed to see the surgeon ASAP.
This happened in the Spring and I had the whole Summer planned. The surgeon didn't want to push but noted that the longer I waited, the more likely I would be to have symptoms.
I leaned toward mechanicals because they are supposed to last forever and I didn't want to increase the mortality rate with the possibility of more than one surgery over time.

 

[Turkey Hunter]

Ben - just now getting to read your post. So sorry to hear about your news. I am on the opposite end of the spectrum when it comes to the body. I am 5'5" and weigh 105 lbs. and my Cardio also told me that the normal measurment would not be normal for me.
Sending you prayers and your family as well!! Hang in there. Did you get a deer? My youngest son got a little doe..

Well, you are a tiny thing. Both extremes; standard thoughts aren't the same for us. Thanks for the prayers.
Congrats to your son for the doe. Was it his first?
And to answer your question, no I haven't gotten one yet. Today is opening season of gun and I'm at work.
i got onto a very large deer during bow and have been after him ever since. I have passed up some nice ones to get him. Probably won't get one at all now ! lol

Hi Ben,
My surgery was driven by the aneurysm. When it was identified, it was 5 cm and I was getting CT scans every six months. One time I went in and the CT scan showed that the size had changed to 6 cm. The Card called me while I was driving home to tell me I needed to see the surgeon ASAP.
This happened in the Spring and I had the whole Summer planned. The surgeon didn't want to push but noted that the longer I waited, the more likely I would be to have symptoms.
I leaned toward mechanicals because they are supposed to last forever and I didn't want to increase the mortality rate with the possibility of more than one surgery over time.

My initial surgery was driven, in the timing, by my original aneuysm. It wass larger than this and docs were very concerned. From its discovery to the OR I was two months & one day.
I opted for the Ross procedure for many, many reasons and am still very comfortable with my choice. If it weren't for the new aneurysm; i would have awesome reports from the docs. I would still reccomend the RP for those who are the right candidate. Am still hoping that when the time comes, they can save and keep the RP as it is!!!!!
As far as another surgery being part of my decision last time; no it really wasn't. It is in my thoughts right now, but we are still not sure what and when I am facing the next one. As I stated it earlier in this post, it may be as soon as next summer or; I can hope here; the aneurysm stabilizes & I get a few more years from the procedure I have. I spoke with anothe Rp patient who is in the same exact place as I am, yet he has been monitored for his new aneurysm for three years now. His stabilized at 5.0 cm, they watch it every six months.

At this point I need to just keep up on all of the new advancements and watch for the new studies being released on some of the advancements from the past five years or so.
What really gets me about when I have to do this, I will have no idea what I will wake up with. I will have three choices ready and will have one of them; I hope. I don't like that feeling.
Oh well, I have to face it and deal with it.

Thanks for the thoughts.

 

[Guest]

See ya then.

Count on it . Perhaps, depending on schedules/timeframes, we can plan to meet up for lunch or dinner ... along with John and Joann and whoever else wants to join us.....


Thoughts/prayers continuing for you, of course.

 

[Phyllis]

Just want to add my best wishes, Ben. I am glad that you have some time to research this thoroughly and know that you and whatever surgeon you choose will come to the right decisions. Best wishes to you and your family and Godspeed!

 

[Mb]

Dear Ben:

I too wanted to add my best wishes as you go through this discovery process. Many decisions for you to make. Funny to be considered an "old timer" though, isn't it? I recall when my husband had his first surgery. His height at 6'4" +- and weighing in at 190 caused the surgeon pause. Felt that the heart pump had to work harder to move the blood that distance....interesting comment.


Again, best wishes for a good outcome.

Marybeth