Going to have surgery

[sood]

Hi all,

I've chronicled my initial issues in the thread below:
http://www.valvereplacement.org/forums/showthread.php?40471-Decisions!-New-to-the-site

I have decided for a few weeks now that I am going to have the surgery to fix my aortic root aneurysm which is at 4.9 CM as well as possibly my aortic valve. The reason I have decided to opt for surgery as opposed to waiting is because I've started to feel some chest discomfort once in a while which no one can explain as well as I now have an irregular heartbeat that can't be explained either. And I'd like to do this and put it behind me, the daily toll it is taking on me with the aneurysm is terrible. I can still exercise and don't have any issues exerting myself which only adds to the confusion.

So I know I need to fix my aneurysm, easy decision there. I need advice on what to do with my aortic valve, which isn't that stenotic yet (peak gradient 29 mm), and may or may not be a bicuspid valve. Also since they have been monitoring the valve through echo's for 12 years, there has really been no change.

I have 3 options with the valve:

1) Leave it alone and fix it later.
2) Replace with animal valve.
3) Replace with prosthetic valve.

I am not sure if repair is an option, I'll try to find out more about that.
I am only seriously considering option 1 and option 2 because of the advances in percutaneous aortic valve replacement which offers a non-invasive option to replace the valve.
I figure by 5-10 years with either option 1 or 2 that the non-invasive method will be much more mainstream and popular.

Option 3 seems like the best, because I can hopefully use the on-x/aotic valve conduit combo (have to confirm with surgeon) and I won't have to hopefully deal with this thing ever again. Obviously the drawback there is warfarin, and hope with the aspirin/plavix combo that will hopefully get fda approval shortly.

I'm only 35, it's a difficult decision. What would you do? I'm meeting with a 2nd surgeon to get an opinion on my choices above on thursday and then will either schedule the surgery with the 2nd surgeon or the 1st surgeon I saw, hopefully between march-may. I haven't had a TEE or cath done yet, which may provide them more information and which they very well may have me do prior to surgery anyway. The first surgeon I met with a few months back said it's hard to tell exactly what route to take with the valve, he said he might not know exactly until he opens me up and see's the true state of the existing valve. I had not discussed the animal valve option with him.

This has been a difficult journey and even decision to come to as far as doing the surgery, but I feel I'm taking all the right steps and doing the right thing. I have found strength from God that everything will be ok and I will get through this.

Thanks,

sood

 

[Heart Of The Sunrise]

sood:

I am older than you . But, our situations sound similar. I will be 57 in April.
I have done my research. I hope that option 3 is where my surgeon wants to go. The On-X valve/ aortic graft. There are some members on here who have had this done. My surgeon has done this procedure. I will be meeting him for the first time real soon. The more people I talk to who are on warfarin... they tell me it is easily managed. I am 4.9 dialated as well. I had a cath and the TEE done already..piece of cake ..do not sweat it. I am fortunate that I am asymptomatic. The cath and TEE revealed no coronary heart disease at all.

Best of Luck!

-Heart of The Sunrise.

 

[ElectLive]

sood - I've posted a few thoughts on the other thread but wanted to mention a few other things related to the valve decision.

Unfortunately, it's a decision in the here and the now, but one that could be drastically impacted by the future. It's tough figuring out where to draw the line on reasonable expectations versus sheer hope. I don't have a crystal ball any more than anyone else here, but do have few cautions about your options.

Percutaneous replacement will certainly expand in use as time goes on, in fact it already has, but that doesn't mean it will ever equal the already very safe option of open heart surgery. Sure, recovery from open heart takes time, but you may want to think about whether you are trying to avoid the risks of future surgery or simply the challenges of recovery. Now, it's a little of both obviously, but something to think about. Besides, even if percutaneous replacement is possible and done in your 40's or 50's, you would likely need another replacement later in life which would not necessarily be percutaneous again. Longevity of these valves are still unknown and size of your own valve is critical...impacting the potential for valve in valve later on.

On-X with aspirin/plavix will not get approval shortly, the trial is still ongoing. On-X with reduced anticoagulation levels is currently under FDA review, perhaps what you were thinking. Either way, this also comes back to an overall risk discussion. Eliminating warfarin is not really a win-win...it's a trade-off of stroke risk versus bleeding risk. The interim results of the reduced anticoagulation trial (now under FDA review) showed generally comparable levels of overall events. But stroke rates were actually higher, they were just simply "balanced" out by reduced bleeding rates. Further, the aspirin/plavix arm is not by any means a guaranteed option even if it does someday get approval. Low risk patient criteria must be met, including proper response to those medications. Approximately 30% of the patients in the higher risk PROACT arm actually started in the low risk arm but did not respond appropriately to either plavix or aspirin or both. You know, it takes about a week's worth of testing, though, I've wondered if maybe cardiologists should be doing this before patients decide on the On-X just so they know if plavix/aspirin is even an option.

Anyway, just wanted to add a little more to the "potential advancement" portion of your decision. Continued best wishes to you and hope you will learn more and more about the true condition of the valve as things progress to hopefully make an even more informed decision.

 

[pellicle]

Hi

Hi all,

So I know I need to fix my aneurysm, easy decision there. I need advice on what to do with my aortic valve, which isn't that stenotic yet (peak gradient 29 mm), and may or may not be a bicuspid valve.

as well meaning as we all are here, your surgeon is best for that ...

Also since they have been monitoring the valve through echo's for 12 years, there has really been no change.

I have 3 options with the valve:

1) Leave it alone and fix it later.
2) Replace with animal valve.
3) Replace with prosthetic valve.

that's about it ...

I am only seriously considering option 1 and option 2 because of the advances in percutaneous aortic valve replacement which offers a non-invasive option to replace the valve.

I would be seriously considering 3 ... I've had 3 operations, and the first two were smooth. As I am older and as the operation is going through the same wound the chances of complications increase. Not just because each time you do it, you expose yourself to the same risk, but as each surgery goes on you increase the issues ... scar tissue (both skin and bone) as well as surrounding the heart and the operation site, adhesions complicating things. The list goes on.

I figure by 5-10 years with either option 1 or 2 that the non-invasive method will be much more mainstream and popular.

I would not bank on it.

Option 3 seems like the best, because I can hopefully use the on-x/aotic valve conduit combo (have to confirm with surgeon) and I won't have to hopefully deal with this thing ever again.

exactly

Obviously the drawback there is warfarin, and hope with the aspirin/plavix combo that will hopefully get fda approval shortly.

warfarin is not the son of satan that it is made out to be.

I'm only 35, it's a difficult decision. What would you do?

I understand your situation, as I had my second operation at about 28, and I was more or less just given a homograph. I wasn't given the discussion of an artificial valve. I too was pathological about warfarin and considered it another worrying factor in an unhealthy old age.

Knowing what I know now, if the pyrolytic carbon valves today were around then (1992) I'd have gone for that and now I'd not be recovering from post surgical infections.

(start with this one, and work through the related ones http://cjeastwd.blogspot.com.au/2012/11/another-surgery.html)


this is my blogpost just pre-surgery 2011 when I had my valve replaced this time (the third time)

http://cjeastwd.blogspot.com.au/2011/11/heart-of-matter.html

 

[TheGymGuy]

pellicle, i am going to bookmark some of you posts. Well put mate.

 

[neil]

personnel choice this one, we can go on forever about which is best ,but it comes down to you,have another chat with your cardio and surgeon after all they are the experts in this matter, listen to all the opinions on here but remember thats all they are,its your choice,good luck and whichever route you choose will be the best for you,

 

[Luana]

I am not sure if repair is an option, I'll try to find out more about that.
I am only seriously considering option 1 and option 2 because of the advances in percutaneous aortic valve replacement which offers a non-invasive option to replace the valve.
I figure by 5-10 years with either option 1 or 2 that the non-invasive method will be much more mainstream and popular.

I wouldn't count on what might be available. A few years ago when I had my surgery, so many were thinking this will be the new standard in a fairly short time. Well, it's not. Right now only used for those who are too ill to have surgery. I don't think it will become the way valves are replaced in the future, unless you're thinking decades ahead.

Make your decision based on now, not what might be in the future. If you don't want to have additional surgeries, get a mechanical valve. That's what it boiled down to for me.

 

[Jkm7]

I just had a conversation with my cardio and I said to him, I am so happy I chose tissue valve. He knew I did the research, asked the questions and put serious, educated thought into my choice. No regrets here. For me, tissue was the best choice and here I am coming up to five years later and I am so relieved that was the choice I made those five years ago.

 

[pekster11]

I had my "meeting" today with a new consultant in a different hospital from my usual one .....

Seems as though, as my valve and dilated aorta are now worth watching more closely, I have been "transferred" from my old CTC outpatients dept in Liverpool, to the CTC outpatients dept at the Manchester Royal Infirmary, where the surgery will be done (when its needed)...No change since last summer... dilated ascending aorta at 4.7cm and blood flow through the valve at 3.8..

I asked the consultant about valve choices...he said it was too early to decide yet, as surgery could be years away yet and he didnt know how far advancements would have reached by the time I needed it

He gave me a "business card" thing with the phone numbers of key nurses in the CTC dept, just in case my situation changed before my next appt in 6 months..

observations about today.
a. Manchester is further away from Liverpool for me. Plus my parents live in Liverpool very close to the CTC...not so convenient anymore
b. Manchester Royal Infirmary is nowhere near as nice as Liverpool CTC
c. The staff at Manchester much less friendly
d. and most importantly..the nurses in Manchester nowhere as cute as at the Liverpool CTC

Oh dear !:tongue2:

 

[Jkm7]

Are you not able to choose at which hospital you wish to have your surgery?
Can you not choose which doctor?

 

[VegasBAV]

I'm 41. I had my aortic valve replaced 6 weeks ago with a tissue valve. My surgeon told me that he expected that it would last 15 years, that my next replacement in 15 years would probably still have to be surgical, but that the replacement after that would probably be via catheter.

 

[sood]

Thanks for all your replies and thoughts. I'll keep you guys updated. I was always leaning towards the mechanical valve and hope that they take care of everything at once, unless they tell me I have a malformed tricuspid valve that may last forever.

 

[Jimjam]

Going to have surgery

Hi sood

I'm 38 and had my AVR 4 months ago, I went through all the things you have - its not an easy time but it sound alike you've done your research and know what to expect. He waiting is worst part, the risks now are so slim - having the op is the right thing to do.
I had a tissue valve Medtronic freestyle and whilst there are no guarantees and everyone is different the time frames for tissue valves can be anything from 5 to 20 years. Transcatheter ops are already happening so the outlook for the second op will be fine.

Have faith in the professionals and stay strong mentally and you will come through it just fine.

James

Ps 4 months post op I'm swimming 1.5kms in the ocean 4 times a week and walking or riding for an hour the other days. Feeling tip top! See your recovery as a job with tasks every day , it helped me.
Good luck.

 

[sood]

I had a great meeting yesterday for a 2nd opinion with a surgeon. Although in essence it almost wasn't a second opinion because things have changed since I last saw the first surgeon 6 months ago, namely the irregular heartbeat and occasional chest pain.

I learned that my aortic valve is pretty tight, only 1 cm opening, where on average a normal persons is 2.5 cm. No one ever told me how tight this was, probably because shockingly it was this tight during my first echo 12 years ago. Basically unlike most people who suffer from aortic stenosis my valve condition according to the echo measurements hasn't really changed at all which is baffling to everyone. I knew this going into my appointment yesterday. He also explained to me really well how all the blood flow works and how much pressure there really is on my aorta when blood leaves the aortic valve.

To make a long story short, he told me that doing nothing with the valve is not an option. So that eliminates that choice. He basically saw it as just as pressing to fix the valve as the aneurysm especially with my new symptoms. He said I should do the surgery within the next year. I asked what are the chances this is a malformed tricuspid valve and that the valve continues to measure out exactly as the last 12 years without any change ever in the future. He said 'no chance'. I liked how he was straight forward and to the point which is what I am. He recommended a mechanical on-x valve, and a graft for the aorta. He did not recommend the aortic valve + graft conduit because he said he would keep the section of my aorta where the coronary arteries are attached in tact because he doesn't see a problem there and that would bode well for me down the road if I have any further operations due to calcification resulting from attaching the coronary arteries to the graft conduit if he were to do that. He also said if you get a tissue valve I think you'll need another operation in 5 years. So he was against that. Lastly he told me my abdominal aorta was slightly dilated, 2.3 cm. That was news to me, although he said it's very small and could be normal for you.

He used to work in the same hospital as my first surgeon and cardio and knows them well. He told me to go with my first surgeon because he was more experienced then him, which I kind of already knew going into the meeting. But he also seemed great, he said he had his first mortality 3 months ago with a 70 year old whose liver failed. I'm not exactly sure how long he has been a surgeon, although I see in the california CABG reports he has data from 2003-2004 as a surgeon so he has sufficient experience in my book too.

I'm meeting with the original surgeon I met with on the 23rd. I'm leaning on going with him, haven't made up my mind 100% yet. I'm sure I'll be fine with either, God-willing.

I'm 41. I had my aortic valve replaced 6 weeks ago with a tissue valve. My surgeon told me that he expected that it would last 15 years, that my next replacement in 15 years would probably still have to be surgical, but that the replacement after that would probably be via catheter.

 

[sood]

Surgery has been scheduled with the first surgeon I had met with for May 3. I came away from a 2nd meeting with him today feeling very reassured. A graft will be put in to replace my ascending aortic aneurysm. And he said 60-70% chance he replaces my aortic valve with an on-x valve. He said he would only leave my valve in there if he saw something contrary to the Echo's and scans that would lead him to believe the valve would be good for a long time like 20 years. He said he would not use the valve/graft conduit because he said my aneurysm starts above the area where the coronary arteries are and he wants to be conservative and keep that in tact. I trust in God and my choice with him as my surgeon and feel I'll have this in my rear view mirror in a few months hopefully. Thank you all for your continued help.

 

[ski girl]

Excellent news that you have a surgery date and a surgeon you're happy with. Your job for the next five months is to keep yourself as healthy as possible - eat well, light exercise - and get excited about the outcomes of this operation.

Good luck from down under!!

 

[escargome]

Well you have taken care of the two biggest things on the "to do list" You have a surgery date with a surgeon you trust. Your questions have been answered and so now the only thing left is the waiting. I can't say for sure that this will happen to you, but you will likely have days when you are calm and ready to go and then there may be days when you will say "$%&# what in the heck is going on. Keep faith and keep us posted. All will be fine and then look out world, you will be over that mountain and ready to start your new lease on life. Best Wishes to you for May 3rd.

 

[Kim54]

Sood,

Keep your faith in God ! Turn it all over to Him and he will work it all out for you. You have done your research and have had your questions answered. May God continue to lead and guide you. He will take care of you. I was apprehensive about my surgery. On the way to the hospital I saw 4 rainbows in a area that has been in a drought. I knew then that all would be well, and it was.

 

[TheGymGuy]

Sood, you took care of everything at this point. Date is set and questions are answered. Like other said, from here till surgery your mind will either be calm or fully reversed and crazy. Its all going to work out, visit this forum for all the success stories and rest assured you will be one of them.

 

[sood]

Thank you all for your kind thoughts. May God bless you guys and your families with great health and happiness!

I hope I can give the same words of encouragement to people that will be in my shoes hopefully after I am on the other side.

Now it's on to the final steps of a possible cath test or ct angiogram and the other pre-op things many of you are familiar with. I'm also banking my blood which makes me happy.

Also TheGymGuy, I wanted to thank you for uploading those videos of yourself post-op. I saw the one where you were squatting a lot of weight 8 weeks post op and it gave me hope and comfort that life can return to normal.