Aortic aneurysm repair and possibly a valve replacement.

[Greenie93]

I went to my cardiologist a couple of weeks ago to do my yearly check up, since I have congenital aortic stenosis. The aortic stenosis itself is mild to moderate, but the issue is that he found my aortic aneurysm grew in size. In about a year, it went from 3.9 cm dilation to 5.3 cm. I just had an MRI done this week, and my cardiologist is supposed to have a conference with the surgeons today on the best course of action with what they find. He hasn't told me anything specific regarding whether I will actually have surgery and when it might be, but it seems like the only thing they are trying to decide on is whether or not to replace my valve while repairing the aneurysm. It's a lot to take in, and I'm extremely nervous and scared. In a year, things went from hoping to hold it off until I was maybe 30-40 to possibly going in before my 18th birthday. My cardiologist said that he hopes to let me keep my valve, because it's apparently doing decently well as far as a valve functioning with AS, but he can't make any promises. I'm currently on 50mg of Metoprolol a day, and just waiting for more specific answers. I'm honestly posting here mostly so I can ask what it was like from people who've been through it. I hope it will give me at least a little peace of mind. How did you all go about dealing with going into surgery? Can anyone with a mechanical valve tell me how it has affected their life positively and negatively? Thank you.

 

[Duffey]

It sounds as though you have alot on your plate. I don't know much about congenital aortic stenosis, but I do know, from having my bicuspid stenotic aortic valve replaced six years ago, that the longer you can hold onto your native valve, the better. You are young enough that you face the possibility of another valve replacement, even f you have a mechanical valve implanted, somewhere down the road. Has the cardiologist mentioned the possibility that you have a connective tissue disorder?

We have had many, many members undergo aneurysm repairs and they all seem to do very well. I'm confident you will too.
Best wishes,
Mary

 

[Greenie93]

It sounds as though you have alot on your plate. I don't know much about congenital aortic stenosis, but I do know, from having my bicuspid stenotic aortic valve replaced six years ago, that the longer you can hold onto your native valve, the better. You are young enough that you face the possibility of another valve replacement, even f you have a mechanical valve implanted, somewhere down the road. Has the cardiologist mentioned the possibility that you have a connective tissue disorder?

We have had many, many members undergo aneurysm repairs and they all seem to do very well. I'm confident you will too.
Best wishes,
Mary

I remember him mentioning something about connective tissue disorders, but I don't know much about them. As far as I know, I don't have any issues like that. I'm not completely sure though, I guess. And I know about the mechanical valve issue, I just have to hope that they decide to keep my original valve in there. I should HOPEFULLY hear more today. Something that makes me feel a little better though, is that even though I am getting it done at a Naval hospital here, the surgeons at the naval hospital are going to work with surgeons at another hospital around here, which is apparently ranked in the top 50 for heart surgery nationally. And thank you for your rseponse.

 

[dick0236]

I'm honestly posting here mostly so I can ask what it was like from people who've been through it. I hope it will give me at least a little peace of mind. How did you all go about dealing with going into surgery? Can anyone with a mechanical valve tell me how it has affected their life positively and negatively? Thank you.

Welcome Greenie93. It is tuff to get this kind of news when you are young... been there, done that.... but take heart:thumbup:, you are following a long, long list of people who have successfully gone thru this surgery.

The most positive effect on my life with a meachanical valve is that because of my valve, I am still here, very healthy, happy and active......for an old man:tongue2:. The valve has, in fact, interfered very little with my life, life style and activities.

The negative is that, for now, anti-coagulant therapy(warfarin) becomes a part of your daily life. It is sometimes a nuissance and the simple regimen of "take the pill as prescribed and test routinely" must be followed...or real problems can occur.

Read, but beware of a lot of the BS on the internet(not this forum tho...it IS one of the most factual and supportive sites you will find), ask questions of your docs because it is
your health and body....and take a few deep breaths:wink2:.

 

[LeakyUK]

I had a mech at 58 and 4 months on feel better than I have in years. I did bang my leg and grew a big bruise and I have given up scary amusement park rides to my sons disgust but no other problems so far. Warfarin control has been pretty good.

 

[Greenie93]

Welcome Greenie93. It is tuff to get this kind of news when you are young... been there, done that.... but take heart:thumbup:, you are following a long, long list of people who have successfully gone thru this surgery.

The most positive effect on my life with a meachanical valve is that because of my valve, I am still here, very healthy, happy and active......for an old man:tongue2:. The valve has, in fact, interfered very little with my life, life style and activities.

The negative is that, for now, anti-coagulant therapy(warfarin) becomes a part of your daily life. It is sometimes a nuissance and the simple regimen of "take the pill as prescribed and test routinely" must be followed...or real problems can occur.

Read, but beware of a lot of the BS on the internet(not this forum tho...it IS one of the most factual and supportive sites you will find), ask questions of your docs because it is
your health and body....and take a few deep breaths:wink2:.

Thank you. And I guess I'm just a little worried about how much it would effect my physical capabilities. One thing I was hoping to do after high school was become an EMT for a little while, even if it was just for the experience, so I just hope it won't damage my ability to lift patients and whatnot (though, I will probably have to put it on hold for a little while anyways, so I can allow my body to heal up enough after this).

 

[Greenie93]

I had a mech at 58 and 4 months on feel better than I have in years. I did bang my leg and grew a big bruise and I have given up scary amusement park rides to my sons disgust but no other problems so far. Warfarin control has been pretty good.

Thank you for your reply. And okay, that's great to hear that you're feeling better. And I'm not too worried about scary amusement park rides for myself, I'm terrified of heights. lol

And thanks everyone, it's pretty comforting to hear from people who have been through it, and are alive and well. Major surgery is a scary thought, and though I've calmed down a lot from when I first found everything out, it's still a really hard idea to digest.

 

[ElectLive]

In about a year, it went from 3.9 cm dilation to 5.3 cm. I just had an MRI done this week, and my cardiologist is supposed to have a conference with the surgeons today on the best course of action with what they find. He hasn't told me anything specific regarding whether I will actually have surgery and when it might be, but it seems like the only thing they are trying to decide on is whether or not to replace my valve while repairing the aneurysm. It's a lot to take in, and I'm extremely nervous and scared. In a year, things went from hoping to hold it off until I was maybe 30-40 to possibly going in before my 18th birthday.

Hello and welcome. Sorry you're joining us so early in life, but sometimes things just work out that way, unfortunately. I felt young at 35, and big picture, I was, but the age of intervention is different for everybody. There are many 20 year olds here, and parents of younger kids too.

My aneurysm situation was somewhat similar to you. I went in for a yearly echo at 35, still thinking I wouldn't need my bicuspid valve replaced for at least another 10 years or more, then out of nowhere, I had a 5.0 cm aneurysm. I was almost too shocked to even worry about how unfair it felt, and after quick follow up with a surgeon, I had surgery a month later. I did valve replacement also, but my bicuspid valve was already into moderate to severe territory. In your case, I imagine that aspect will be a tough decision. Sure, it's pretty "easy" to replace a valve while already in there to fix an aneurysm, but if the valve is being replaced prematurely, it may not always be the best long-term decision. But that's a conversation between you and your surgeon.

This takes some perspective, but the surgery really is not nearly as big a deal as you might assume initially. Also, while doing both aneurysm and valve replacement together added time to my surgery, additional risk was very insignificant. I'm around 1 year later now, and the best news for me is that I feel no different now than I did 6 months ago. I was back to normal a long long time ago. I did see your question about capabilities long term. In most cases, there are few if any restrictions. However, excessive heavy lifting might be one exception, partcularly in an aneurysm patient. It would be good to discuss that further with your doctor.

Preparation for surgery can certainly be chaotic and stressful, but at a certain stage, more likely than not, acceptance and calm will settle in and you'll actually just want to get it over with. No matter your age, there's never a good time. Mine actually happened while my wife was pregnant, third trimester, and we managed to work everything out just fine.

There's a wealth of information here, spend as much time as you can reviewing and asking questions. Much of my 4 weeks of preparation were spent educating myself here. Best wishes in the process for you, as you learn more what you need to do and when.

 

[Bill B]

I went through aortic root, ascending aorta and partial aortic arch replacement along with my AVR almost 2 years ago. My surgery was over all a remarkably easy event FOR ME. I'm sure it was not so for the surgeons who spent close to 10 hours doing this. The root and ascending aorta procedures are quite common. The arch is more complicated and requires complete circulatory arrest and other maneuvers. Anyway, I awoke that evening and never had any pain or soreness post-op - that's a bit odd. Most people have some as you would expect from a big sternal incision. I woke up with no breathing tube or any sensation that I had ever had one (no sore throat at all). That first night in the ICU my worst problem was extreme thirst for which they would only provide limited ice chips. The next morning I was up drinking whatever I wanted. A few days later the chest tubes, pacing wire and bladder catheter were pulled, which were total non-events. I could feel a tiny bit of a tug with the pacing wires only - no pain and no discomfort at all when the others were pulled. My worst problem post-op was trouble sleeping probably due to general anxiety about how I was going to do long-term and some gastric paralysis from the anesthesia, so I got very bloated and gaseous when I ate. That took a few weeks to clear up. I put on 10 pounds of fluid and had transient renal impairment post-op but this cleared before I was discharged a week after surgery.

Anyway, I shouldn't bore you with further details of my rather benign recovery. My point is that aortic grafting is quite commonly needed, especiallyly with BAV that I have. Depending on the extent of the aneurysm it could vary from routine to more complicated for the surgeon and his staff. But it makes little difference if any in the recovery. Certainly extensive aneurysm repair adds statistically to the risks of surgery, but if you have an aneurysm, particularly an expanding one of this size, it needs repair at some point, perhaps soon, and the surgery has a remarkably high success rate. I never really worried for a minute whether I would survive the surgery. I was not scared. I needed the surgery and that was it. I went from a totally healthy guy at age 60 with no knowledge that I had BAV to requiring surgery only a year later. It was all rather surreal as I had no symptoms, but I was resigned to the fact that I had time-bomb with a burning fuse that needed to be addressed. I was more or less, "Well, here goes!' as they wheeled me off into the OR. The pre-op prep guy was a talented conversationalist who kept me totally distracted until then. I hope you meet someone as nice in pre-op.

 

[camgough]

Hi Greenie,
I was 30 at the time of my surgery, and I had valve sparing aortic root replacement surgery. My aneurysm was 6.7cm, bur my bicuspid valve was still working pretty well, and luckily my skilled surgeon was able to keep it in me, for now. If it couls have not been spared, my second choice was also a mechanical valve. I am 14 months since surgery (to the day), and even with a pacemaker I have returned to full duty as a police officer. I am on no meds, can work out (still nowhere near pre surgery) and feel generally pretty good. I hope the best to you, and PM me if you want more details about my surgery, etc....

Cam