Decisions to be made on aneurysm and bicuspid valve

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Nicholas288

Well-known member
Joined
Mar 23, 2009
Messages
52
Location
Sayville NY USA
I know a lot of these questions are redundant based on the posts I have read but here we go.

I am 40 next month, have an aneurism on the aortic root, & a bicuspid valve with a slight leak. Found via ECO 2004. Currently have no symptoms.
It has steadly gotton worse. In Sept. I was 5.0. Next exam is in December.
Here are my questions
1. Anyone have experience with Dr. Roman or Dr. Girardi at NY Presbyterian
2. Getting some conflicting info. Cardio says 5.0 is go time, the Surgeon says 5.5 if they are not planning to spare the valve (CAT shows valve stable). Thoughts?
3. Any experience repairing not replacing bicuspied valve?
4. bio vs. mech? I am active, & the ticking thing scares me. Thought process at the moment is anything to keep off the table 2X should be done (i.e. mech).Cardio did say however that recently she has recommended Bio for patients my age.
5.Run my own business. How long will I be out of commission? Currently in shape exercising 5 times a week.
6. How to handle post op with kids? Have a 5.5 & 2.5
7. Starting to get depressed,fear how I am going to feel post op. Experience?

Thank you all in advance.
 
Nicholas288 said:
I know a lot of these questions are redundant based on the posts I have read but here we go.

I am 40 next month, have an aneurism on the aortic root, & a bicuspid valve with a slight leak. Found via ECO 2004. Currently have no symptoms.
It has steadly gotton worse. In Sept. I was 5.0. Next exam is in December.
Here are my questions
1. Anyone have experience with Dr. Roman or Dr. Girardi at NY Presbyterian
2. Getting some conflicting info. Cardio says 5.0 is go time, the Surgeon says 5.5 if they are not planning to spare the valve (CAT shows valve stable). Thoughts?
3. Any experience repairing not replacing bicuspied valve?
4. bio vs. mech? I am active, & the ticking thing scares me. Thought process at the moment is anything to keep off the table 2X should be done (i.e. mech).Cardio did say however that recently she has recommended Bio for patients my age.
5.Run my own business. How long will I be out of commission? Currently in shape exercising 5 times a week.
6. How to handle post op with kids? Have a 5.5 & 2.5
7. Starting to get depressed,fear how I am going to feel post op. Experience?

Thank you all in advance.
Click to expand...
If you do a search for Dr. Girardi in the feature at the top, two members have recently used him for their replacements--nickd and vprnet. I would send a pm to both and ask for their opinions.
I met a member recently who had an aortic valve repaired. I don't know if it was bicuspid or not. His name is survivorman, and I am confident he would be glad to share his experience with you if you drop him a pm. At the present time, I don't think his repair is doing very well, but he could elaborate more.
Post-op recovery times vary. Some have returned to work very quickly, but I would say on average, you should expect to rest and recuperate for 3-4 weeks.
You'll need help with the children, and you won't be able to life more than 8 pounds for awhile.
Hopefully you will feel that you've been given a second chance at life after your surgery, and you will live life accordingly. However, many valve recipients feel down in the dumps at some point in their recovery. I think it goes with the territory. Facing your own mortality can be a sobering event.
Good luck and glad you joined the group.:)
 
I always recommend that BAV patients ask their Surgeons about their Experience dealing with BAV and Connective Tissue Disorders (which often accompany BAV). You want someone who can recognize the signs of defective Aorta Tissue and knows what to do and how to do it. Personally, I would not use a surgeon who only sees these kinds of patients a few times a year. EXPERIENCE COUNTS !

I see Many Newcomers come in worried about the 'clicking' and I guess I was way back when. Sometimes I can hear my valve in VERY Quiet rooms, especially with tiled walls, or if my body is in certain positions, typically in bed with my shoulders curled together laying on one side - I forgot which. I find the soft sound to be reassuring and will sometimes inhale and hold my breath to enhance the sound. (We valvers can get a little weird at times :)

To learn more about the valve options and living with each, look over the Valve Selection Forum, starting with the "Stickys" at the top of the thead listing after clicking on that forum.

FWIW, I'm inclined to be in favor of the "Sooner is Better" line of thinking. Valve Disease and Aneurisms are NOT going to get better by themselves or with medication. I see little benefit in Waiting and Watching. Get it Fixed and get on with life.

With NO complications, you should be able to go back to office work in 6 to 8 weeks (but you WILL get tired). It takes several Months to feel that you have reached your full recovery potential (and recondition your body and muscles).

'AL Capshaw'
 
Short-term disability normally pays for and routinely allows 6-10 weeks for recovery from aortic valve surgery. They don't part with money easily or unnecessarily.

You can return to work earlier, but you risk not getting your heart back into shape before you return to riding your chair, and if you have a normal sternotomy, your rib cage will not be basically healed until six weeks, and not reliably healed for at least eight weeks.

Most people should not even be driving a car for at least four to six weeks because they are unable to twist their bodies rapidly to see traffic to the sides and rear, and would be unable to crank the wheel with necessary force in a tight situation.

Depression is not what you should feel after OHS. Relief, joy at getting another chance at everything, a feeling of accomplishment for what you've been through, yes.

Best wishes,
 
Welcome to VR.com Nicholas. If it were me, I would want surgery ASAP...with BAV I have read that 5.0cm or even smaller should be the trigger for surgery. As for the valve, again, it it were me I would want it replaced, othewise, you will most certainly face another OHS later. I would at your age...heck, at my age...opt for mechanical. Like you say, anything to avoid another OHS.

Best wishes,

Jim
 
Welcome to the site. Also regarding your question about the doctors, maybe you can also try the Search abilities of the site. You probably don't need instructions but, just in case, click on SEARCH on the darker blue horizontal bar above and type in your doctor's name and I think it's quicker to click on the POST option rather than the THREAD option -- WHOOPS that's been covered already, sorry.

What else. Oh, my surgeon wouldn't let me drive for 8 weeks after the surgery, nor lift, push, or pull more than 5 pounds -- though that restrictiveness isn't common from what I've read here.

Oh, and I've often read that bicuspid valves don't repair well, though perhaps someone else can add further info about that.
 
Nick,

Welcome. and I sent you a private message. Dr. Girardi is a great surgeon, he deals with bicuspid valves and one of his specialties is aneurysm repair. You will be in good hands.

Nick
 
Nick,hello! Lets just say, dont be like me and wait for 7 yrs to get the surgery! I had so many excuses and I was risking my life everyday being so stubborn. My aneursym is 5.0. I really put myself at a lot of risk. I regret not having this done a long time ago. I also have put my family through a lot of unneeded stress and anxiety, esp my husband. It was totally selfish on my part, and I am now glad to get it over with tomorrow.
Good luck and God Bless!
 
Welcome!

Welcome!

Nicholas, Welcome! Sorry you had to find us but glad that you did.

From what I have read, aneurysms in patients with BAV should be repaired when they reach 4cm. Check out the "Bicuspid and Tissue Refference Links" sticky at the top of the BAV and Connective Tissue Disorders forum.
http://www.valvereplacement.com/forums/showthread.php?t=11603

This is a quote from one of the articles linked there:
"Aortic dilation should be carefully monitored by echocardiography and aortic root replacement recommended more aggressively for patients with BAV with aortic dilation (ie, 4 to 5 cm) than for those of patients with tricuspid valve (ie, 5 to 6 cm)." There is a wealth of information out there and a lot of it can be found at the Biscupid Aortic Foundation's website. Here is the link to Medical Literature page on that site:
http://www.bicuspidfoundation.com/Medical_Information.html

Read through the articles (make sure you have lots of time!), print out the appropriate ones and show them to your cadio/surgeon. I agree with AL Capshaw, this is not going to get better on its own so what is the advantage of waiting? Get this taken care of sooner rather than later and you will feel so much better.

As far as the clicking/ticking, I think most people do not even notice it or if they do, they become so accustomed to it that they don't notice it any longer. We had to listen really hard to hear David's valve. I am pretty sensitive to sound and don't hear it, even when it is quiet in the room. You are young and fairly active and with a tissue valve you will be looking at another OHS in 10-15 years (if you are lucky) and probably two or three more OHSs at your age. Tissue valves do not last as long in younger patients and I believe they last an even shorter time in active younger patients.

From my husband's experience, and what I have read others say, I think you will feel much better post-op than you imagine. David did not really have any pain at all, just some discomfort (and not a lot of that either). The important thing is to stay ahead of the curve as far as pain is concerned and ask for pain meds before it gets too bad. David did not even fill the prescription for the painkiller and only took a Tylenol a couple of times to help him get to sleep.

As far as your kids, they are young and may not fully understand what you will be going through. Obviously you can prepare the 5.5 year old more than the 2.5 year old. I wouldn't get too technical, though. I think it is most important for them to understand that they will have to be very careful around you for the first couple of months. I don't know if you usually play rough with them or not but now would be a good time to start playing with them and interacting with them in a way that will protect your sternum. The 5.5 year old will understand about how to be careful and maybe you can put him/her in charge of watching his/her sibling around you. It will take a good 6-8 weeks to heal and you don't want to have any problems with that.

Keep asking questions. There are many knowledgeable and caring people here and you will feel much better hearing from everyone who has at one time or another dealt with everything that you are going through.

Take care!
Nadine:)
 
Dear Nick,

I went through this very recently. I had about 5.0 cm aneurysm and a very mild leak of my BAV. I have two children about the same age as yours. My surgeon, Dr. Duke Cameron at Hopkins in Baltimore, whom I highly recommend by the way, was of the mind that I could wait to 5.5 cm. His initial reason was that if I went with a tissue valve, I'd be starting the clock on future surgeries. He was considered about that. After he saw my echo films, he was able to classify my leakage as mild and state that there was a greater than 90% chance of sparing my valve. With this new information, the surgical threshold lowered to about 5.0 cm.

I elected to have surgery because I am a worry wart, didn't want to wait around to see if the thing would blow, and thought I had a reasonably good chance at sparing the valve. Even if the valve hadn't been salvagable, which it was, I was going to elect to have a tissue valve because I wanted to avoid a lifetime of blood thinners (I am 31 years old). I also believed that there was a high likelihood that by the time a tissue valve ran its course the transcether valve replacement would be standard and I would not face another open heart surgery. Plus, my surgeon stated that even if I had to have another OHS the risk of surgery would not be higher in his hands.

I would ask your cardiac surgeon to examine your echocardiogram and make an analysis on whether he thinks he can spare your valve. Also, you should ask whether he uses the remodeling technique or the reimplantation technique of valve sparing. The latter seems to have more success.

Post-op with kids that age is difficult. I still cannot lift my kids and I am nearly 10 weeks out. It has been hard and I think having family and friends around to cook meals and take the kids if necessary is a good thing.

I understand your depression. Mine comes as a result of anxiety, but know there are many here who have gotten through this. As I posted on another thread, I was amazed the other day to look at a study of 372 aortic root replacements of Marfan patients at Hopkins over 30 years. Of those 372, 327 were non-emergent and the other 45 fell into the emergent/urgent category. They only had 2 deaths out of that whole sequence and that was two people who came to the table with a rupture. While this surgery is intellectually scary, on another level it is routine for many of these surgeons (you want to find someone who does this all the time and someone who does the valve sparing frequently).

Please feel free to send me a message and we can connect personally and talk on the phone if you like.
 
Welcome Nicholas,
Others here are much more eloquent than I, and can answer your questions better than I. All I can add is that my aneurysm was 5.0, no symptoms (except a swallowing problem), I was not going to wait, I wanted it done the day I found out.The wait alone was going to kill me.....too much stress and depression and anxiety.
I am going to return to work very soon, (complications with pericarditis)....I'm glad that I did not wait, mine was ready to blow...

Lots of luck!
Linda
 
Hi Nicholas,

Few words from the other side of the Atlantic. I am 38 yrs old and 18 days post op for AVR. Prior to surgery I had extensive discussion on what type of valve should I choose. I had very experienced surgeon working in Switzerland who told me that in my age and active life going for bio would probably mean in 8-10 years going for second OHS. After what I went through with this one no way that I would go for another one, 18 days passed, feeling relatively OK, active, walking everyday. Anticoagulant therapy is still in "finding the right dose" stage and ticking sometimes I hear sometimes I don’t, you get use to it very quickly. I was monitored for bicuspid valve and stenosis for 3 years prior to op and in my opinion the sooner the better. OP is behind me and looking forward to get back to normal life ASAP.
BR
Tomislav
 
Welcome to the forum. One thing to add is that you will want to have your kids checked out by a pediatric cardiologist. This condition is genetic.

How you feel post op is going to be driven as much by how well your recovery goes as anything. I felt okay my second week but had a really bad third week. Frustration kicked in at that time. Don't know if I'd call it depression, sometimes you're just frustrated. I'm six weeks post op now and feel much better. Returning to work on Monday.

My aorta was at 4.9 cm and I've had a mechanical valve for 19 years. I stuck with mechanical. I've been on warfarin and clicking away for 19 years with no complications. No sense in messing with what's been working. Having been through OHS twice, I would highly recommend choosing whatever option reduces or eliminates the need for future surgery.

Good luck.
 
Nicholas, welcome to VR. One of the first things my PCP warned about was the anxiety that can build before surgery and the depression that can follow. I would urge you to speak with your Doctor about dealing with this now before it gets worse because depression is not helpful as you recover. One of the things you can do to reduce anxiety is learn as much as possible about your condition and about the propossed surgery. There are resources here in VR and you should not hesitate to ask questions. I would just reiterate what several people said above and that is that these problems do not get better and it is best to get them fixed when you are healthy. Waiting for surgery until your condition is more advanced can increase your chances of complications. Finally, you must take the time to recover. You will do neither yourself nor your family any favors if you fail to allow yourself the time necessary however long that is but 6-8 weeks is pretty typical for being able to begin returning to a more normal routine. Your chest will continue to heal for some time after that and it can take a couple of years for your heart to adjust to the repairs. If you have a good surgeon, (and it sounds as though you do) he will help guide you through the details of your surgery and valve optionss. His guidance will be a big help. Until then, learn as much as you can and let us know how we can help.

Larry
 
Valve replacement

Valve replacement

Nicolas I have just read your post. I just had my aneurysm removed and Valve repaired in April. I went through alot and most surgeons wanted to take te valve along with the repair. But thanks to many I was directed into the city and it met a great surgeon who looked over my records and had three options valve repair being the first. This is a tough time for you and you must look at all options. My aneurysm was 5.2. I had no pain or symptoms. So I was lucky they found this. I do not like to mention surgeons names on the site as they are all professionals but you certainly can write me and I can give you any info you need. I live in NY and the surgeon I used was in NY.
Have faith this site got me through so much and always remember god is with you
 
Get the party started! You need it fixed, I went out on short term disability then long term for 18 months, I have not returned to work yet. (just passed my three year mark) Good Luck and God Bless, see you on the other side of this mountain!
 
Nicholas,

How about giving us an update on your plans?

Have you interviewed any Surgeons or made any plans / decisions since your last post on Oct. 19?
 
In consultation with my Cardio and Surgeon we opted to go for the Bentalls all-in-one valve and aorta to try avoid any further surgeries...I sacrificed my BAV (they estimated it had about 10yrs'til it needed replacing)...I do not regret it one little bit....best thing ever to get it over and done with and get back to normal life...I was 41 at the time with 3 sons just entering teenage-hood (is that even a word!?)
 
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