diagnosed in october

[gerryc]

hello to all.

im new here and im sure you have read a post like this many times but im hoping ill get a few answers anyway.

ive been diagnosed with a 5cm dilated ascending aorta.it was found by accident.i was referred to a heart surgeon and he said"the benefits of waiting outweigh the risks of surgery at the moment".and he said to come back in 6 months for another ct.im 36 and to say im anxious and worried is an understatement.
id love to hear from people in the same suituation male or female it doesnt matter.i have loads of questions most of which i wont even post for the moment but heres one or two for now.

1: should i get a second opinion?(i live in ireland and the heart surgeon is one of if not the best in the country)
2: are there any symptoms with a stable 5cm dilated aorta?(im not at work for the moment my employer has advised to me to stay out for now)
3: one doctor referred to it as a timebomb in my chest.it wasnt because of what he saw or anything i guess he was just an insensitve ***hole.but is he right?is it that bad or can you live with it?

well i dont want to bore you all but i need someone thats been through this or going through it to have a chat with.

thanks again for reading.

gerry

 

[ALCapshaw2]

Welcome Aboard Gerry !

You have raised some good questions.

As your surgeon implied, there is a trade-off between the risk of surgery and the risk of rupture / dissection.
He may have wanted to re-examine you in 6 months so that he will have a better idea of how rapidly your aneurysm is progressing.

Many Surgeons in the USA use a 5.0 cm Aneurysm as their trigger point for recommending surgery to repair/replace the aneurysm.
Some use 5.5 cm, depending somewhat on body size.

Patients with aneurysms are typically advised to avoid stressful situations, both emotional and physical.
NO Heavy Lifting / Pulling / Pushing. Mild / moderate aerobic exercise, especially walking, is 'usually' OK.

IF you can get a second opinion, that is what I would do with your condition.
I don't blame you for feeling like you are 'walking on eggshells'.

You aren't the first to hear the "timebomb in your chest" analogy.
You could probably find other posts addressing that 'assessment' by doing an Advanced Search for keyword "timebomb". Be sure to scroll down the options page and click on "Any Date" in the drop-down menu. There have been MANY threads on aneurysms, especially in the Bicuspid Aortic Valve and Connective Tissue Disorder Forum.

'AL Capshaw'

 

[Allisoninoz]

Hi Gerry,
I don't know much about dilated ascending aortas but I do know this is a great forum and you'll find terrific advice here.
I'm Australian, 42 and a mum. Have just this week been booked in for valve replacement surgery in February. It's really hard not to think the worst and imagine that every little twinge is a heart attack. I have the 'advantage' of knowing I've had this condition all my life and would one day have to have the surgery, whereas it's obviously a shock for you.
Second opinions are always worthwhile and can put your mind more at ease if nothing else.
I find that it's a really hard balancing act when it comes to research and reading. I can get obsessive about it and that can be bad for me - but it's also important to understand as it's my body. I think the best thing is to find a doctor you have confidence in. Talk to anybody you know in your city who has had heart surgery and get some advice from locals.
Good luck ... and Happy Christmas ...

 

[mainframe]

Hi Gerry,

First, welcome to the site, sorry you have to be here. While it might be true the risk (percentage wise) might be less than surgery at this point, there are some who experience a aortic disection prior to 5.0. A former member Ross was one such individual. Was the doctor open to the idea of surgery sooner rather than later based on patient desire? If not, I might get a second opinion.

I guess the real question is what are you comfortable doing? I would tend to want the surgery over with if I knew I was going to have to have surgery in any event. In my opinion, better to get if fixed now that wait until you wish you had. My aorta was dialated to 5.0 but had a severely leaking bovine valve, but the ascending aorta was replaced when the valve was replaced.

 

[bdryer]

Hi gerry

Indeed I was also diagnosed as a walking time bomb, on Oct 14 of this year. AV opening reduced to .6 cm and ascending aorta measuring 4.5 cm's. Waiting for a surgery later Jan.

It bloody stinks being in such a severe state and waiting for surgery cause , I've been corrected, our Provincial health system not Canadian is beyond over burdened.

Do not wait till you become severe, get it done and get on with your life.

 

[jake]

To wait, or not to wait

To wait, or not to wait

Hi Gerry

Interesting to hear your situation, it was almost exactly what happened to me. I went into the hospital a year and a half ago for a procedure to repair an artery and they discovered my ascending aortic aneurism. It alarmed the doctor enough to put off the artery repair until a surgeon could decide whether to do an aortic repair AND fix the artery, or fix the artery which would force me to have to wait at least a year for surgery on the aorta. I was at 4.4 than.

Long story short, I waited and for me, it was a terrible burden mentally knowing that my next fall off my rollerblades, or a car accident or a hard sneeze might be my last.

Everyone has a different level of mental fortitude and I fancy myself a pretty tough guy with regards to not babying myself and not being fearful. Truth be told, I was scared! I waited over a year before going for several opinions. The other opinions I was hearing were things like:

"What do they think is going to happen, it’s going to shrink?"

“Your only 42, ideally, how long would you like to wait?”

"Sure surgery is painful, but how does it feel walking around with that thing in your chest?"

"If we move now, we have lots of options, if it begins to fail, you have NO options"

"Recovery doesn’t take less time the older you get"

"We move now, we can likely save your aortic valve, we wait, and the your chances of keeping that valve go down exponentially"

“The radiation from a CT scan every 6 months for a few years can prove to be as deadly or more of a health hazard than that aneurism twenty years from now.”

"Your chances of death or stroke during surgery are lower than your chances of being killed by a drunk driver in the next week so drive carefully"

As for symptoms, that debate varies from doctor to doctor, but for me, I was having chest pain, shoulder pain and back pain. Was it in my head or for real? At this point, it really does not matter if it was in my head or not, I had it and it was no way to live.
For me, it came down to a simple idea. Surgery is dangerous, but what is more dangerous, surgery or likelihood of discretion? Based on your activity level and what you do for a living, only you can answer that. My aorta stayed at 4.4 cm for a year and grew from 4.4 to 5 cm in just a few months. I am now two weeks post-op and although sore and tired, I’m glad I did it. I have my life back.

Whatever you do, commit to it and don’t look back or second guess it. Get as many opinions as you can and do what feels right to you. No one knows better what’s good for you than your gut. I wish you all of the luck in the world and please know that this support site has made my transition into this 99% easier for all the info and support out here.

 

[Greg a]

Gerry, 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/forums/showthread.php?27412-Acronyms

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-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

 

[scott.eitman]

Hi Gerry

Interesting to hear your situation, it was almost exactly what happened to me. I went into the hospital a year and a half ago for a procedure to repair an artery and they discovered my ascending aortic aneurism. It alarmed the doctor enough to put off the artery repair until a surgeon could decide whether to do an aortic repair AND fix the artery, or fix the artery which would force me to have to wait at least a year for surgery on the aorta. I was at 4.4 than.

...

Great reply! The quotes are great, but the commit to it message is just as great.

Scott

 

[clement]

Hi Gerry,

I am a bit like you: Was diagnosed with bicuspid condition and 5 cm aorta dilatation 2 months ago at age 43.
My cardiologist recommended surgery in the new "few months", 6 months being the maximum recommended (What a lovely voicemail it was...).
My surgeon recommended surgery in the "near future", to avoid catastrophic rupture consequences.

I live in Portland, OR. I do IT consulting for a living and was commuting to St Louis MO each week for a project.
I decided to have a second opinion far away from my hometown to avoid any "relationship" between the 2 cardiologists.
The second opinion was at Barnes Hospital. I brought with me the CD with the latest echocardiogram results.

The second opinion confirmed the 1st. This was enough for me to go ahead with surgery now scheduled for 01/05/2011.

I am asymptomatic but in the last weeks I have reduced my physical activity (no heavy weight lifting) because concerned about a potential rupture.

I am now mentally prepared for the surgery.

Bottom line: Get a 2nd or even 3rd opinion ASAP.

Best wishes,
Clement

 

[gerryc]

well first of all i want to thank you for all your replies.they answered a lot of other questions that i havent posted.
on the second opinion option.as this is ireland and its so small id really have to consider going outside of ireland to get one because its nearly a suituation where all the heart surgeons know each other here lol something like that anyway.

i got mild chest pains about 2 weeks ago and i went to a&e and they did all the relevant tests and they found no change in anything so id say it was anxiety or whatever.i made my surgeon aware of this just today and he said come see him in january and we can talk about it or we can schedule surgery.so its good news in one way.

but if he is the heart surgeon and hes advising me that we should wait 6 months im thinking who am i to question him?im a mailman not a heart surgeon.thats whats going through my head anyway.

and clement was the last person who replied.you say your mentally prepared for the surgery.thats great.
im afraid of it and im afraid of not waking up.im sorry to be so blunt but its the truth.im not worried about the recovery really.
again these are just things im thinking about

thanks for listening.
ps i have a wife and 2 small kids to think of to.

 

[gerryc]

greg a id love to read those posts but only the pdf works none of the others do.can you direct me towards them please.

thanks

 

[Lily]

Hi Gerry - The first thing I thought when I woke up after the surgery, with the vent down my throat, was, "Good; I woke up!" The second thing I thought was, "Get that thing out of my throat!" And this wasn't my first heart surgery. So, I think what you are describing is something that most of us go through.

I wanted to tell you also that there are other members here from Ireland and what you wrote reminded me somewhat of the frustrations another Irish member, Eirecara, has also had getting the doctors to address her heart issues.

Anyway, hoping all goes well for you and welcome to the site

Editing to add: Another Irish member is Bad Mad (I think he's famous in Ireland). You could search either of those members and read some of their posts, even about Kevin's (Bad Mad's) surgery.

 

[Lily]

greg a id love to read those posts but only the pdf works none of the others do.can you direct me towards them please.

thanks

Yes, Greg - those VR site links aren't working. Can you please help?

 

[gerryc]

thankyou.im sure its what a lot of heart op patients go through.im leaning more and more towards getting the surgery done and getting on with it.id love to hear from any irish people to maybe we had/have the same surgeon lol

 

[Lily]

Hi again Gerry - Sorry, but our posts may have crossed. When I was new to this site, sometimes I missed posts when I was posting and others posted also.

Anyway, you can search Eirecara and Bad Mad and read some of their posts; specifically you might be interested in some of Bad Mad's pre-surgery posts and his post-surgery posts. He first had a tissue valve which quickly wore out and then he got a mechanical valve.

Also, I just went over to the Pre Surgery Forum and there are two "sticky" threads at the top of that forum that may be a couple of the links that Greg provided. Hope it's helpful reading for you.

Editing to add the link to Bad Mad's profile: http://www.valvereplacement.org/forums/member.php?3666-Bad-Mad
where you can read his posts and the threads that he started and send him a PM (private message).

 

[Gregory]

Gerry,
Sorry to hear your troubles. It's understandable that you'd be anxious and worried - it's very scary. The good news is that they have a way to fix this.

I am 34 years old. I found out in May of this year, quite by accident, that I had a 5.0cm ascending aortic aneurysm. No symptoms. Didn't really know what the aorta was or what an aneurysm was. And I had a few doctors scare me quite a bit. In time I found good information and was fortunate to meet with two of the best aorta repairmen in North America. You should check out the reference sources forum - I posted a link there from the 2010 aortic symposium; the content is rich, if a bit sobering.

Have you been diagnosed with a bicuspid aortic valve, screened for Marfans syndrome, or are you aware of a family history of aortic aneurysms? These are critical questions, especially as you assess the size of your aorta and what it means.

In any event, I ultimately couldn't function well with the surgery prospect looming too long and I went ahead with the aorta ressection on October 21 of this year. I did it in Cleveland at the hands of Lars Svensson. They did a great job. It will be 9 weeks tomorrow and already I am starting to not think about it throughout the day. The shock zone you're in is tough and the waiting period is very painful for most everyone. From the other side, I can tell you that there's plenty about which to be hopeful.

To be fair, it's a serious surgery and the risks are real, if relatively well managed in this era and at a specialized high volume institution. The way I saw it, the one time risk of surgery was lower than the on-going risk of living with an aneurysmal aorta (I have a bicuspid valve).

Lots of learning to be had on your end, and this community is a wonderful resource - mine it well. If you want to send me a private message we can talk further and in more detail.

-Gregory

 

[ALCapshaw2]

Gerry -

Perhaps it will help ease your fears to learn that First Time Heart Surgeries have a Very High Success Rate (typically 1% risk of morbidity and 1% risk of mortality in the USA) versus a very Low (<10%) Survival Rate IF you suffer a Ruptured Aorta.

Many patients report finding a "sense of Peace" once they accept their condition and then look forward to 'getting Fixed' and getting on with their life.

Personally, I see little benefit in waiting once you know you have a condition that can ONLY be fixed by having Surgery.

'AL Capshaw'

 

[clement]

Hi Gerry,

Like you I have kids (2 daughters 9 and 14).
I have been able to reduce my fears tremendously with hypnotherapy. I listen to my tapes each days.
Do you know that hypnotherapy was used before anethasia to perform surgery on people?

Happy Christmas,
Clement

 

[drivetopless]

but if he is the heart surgeon and hes advising me that we should wait 6 months im thinking who am i to question him?im a mailman not a heart surgeon.thats whats going through my head anyway.

and clement was the last person who replied.you say your mentally prepared for the surgery.thats great.
im afraid of it and im afraid of not waking up.im sorry to be so blunt but its the truth.im not worried about the recovery really.
again these are just things im thinking about

thanks for listening.
ps i have a wife and 2 small kids to think of to.

First, I'm so sorry you are dealing with this. It must be quite a shock. Many of us on here have had the luxury of time to deal and come to terms with the inevitable surgery.

I just have to say, and I hope I'm not adding to your fear, that waiting too long is more likely to threaten your life than the surgery. A friend of mine's brother recently passed when his anuerysm dissected, leaving behind a wife and two kids.

And yes the surgeon is the expert, but you know how your body feels. Trust your gut.

Good luck and peace!

 

[Lynlw]

Hi again Gerry - Sorry, but our posts may have crossed. When I was new to this site, sometimes I missed posts when I was posting and others posted also.

Anyway, you can search Eirecara and Bad Mad and read some of their posts; specifically you might be interested in some of Bad Mad's pre-surgery posts and his post-surgery posts. He first had a tissue valve which quickly wore out and then he got a mechanical valve.

Also, I just went over to the Pre Surgery Forum and there are two "sticky" threads at the top of that forum that may be a couple of the links that Greg provided. Hope it's helpful reading for you.

Editing to add the link to Bad Mad's profile: http://www.valvereplacement.org/forums/member.php?3666-Bad-Mad
where you can read his posts and the threads that he started and send him a PM (private message).

Hi Gerry, IF you can get a 2nd opinion I would.
About the links in Gregs posts, as Lily said some of the links, are in the "stickies" at the top of the "preop" forum and the other links (should) go to stickies that are at the top of the "post op forum". I hope that helps