I have had a bicuspid valve my whole life...

[brunoandbear]

Hi all, thanks for all the further ideas and advice.

I am meeting with my second opinion surgeon tomorrow. The first surgeon wants me to get a TEE this Wednesday, so I am hoping the surgeon tomorrow will have a lot to say.

The first surgeon seemed to think a repair would last 10 - 20 more years. I really just want to get fixed and have them put in me whatever is best. A tissue valve would require coumadin, which from what I have read requires quite a bit of adjusting. Is there a reason these tissue valves wear out so fast? Are they no longer living and receiving nutrients to allow them to grow new cells?

I do not want to have to have surgery again if possible - well, at least open surgery - apparently they are working on valve replacement technology which lets them go through your major arteries and do it from the inside. I am though a bit skeptical of it being able to be done with someone that has a dacron graft. Anyone here know any more about that?

 

[MrP]

Tissue valves calcify more quickly in younger patients like you but don't require long-term coumadin treatment like mechanical valves. Tissue valves are typically recommended in older patients. In younger patients, tissue valves most likely will mean another surgery down the road.

Mechanical valves last forever usually but may fail and need to be replaced in the future, although this is rare. The downsides of mechanical valves are lifetime coumadin treatment on a daily basis with frequent (at least monthly) blood tests to monitor and stay in theareputic range. Mechanical valves are often loud, and the constant clicking noise takes time for one to get used to, becoming the sound of living.

For you, another surgery down the road will be guaranteed with a tissue valve; however, a mechanical valve represents lower risk of another surgery but increased risks of bleeding issues related to coumadin usage.

All my best,
MrP

 

[Lynlw]

Hi all, thanks for all the further ideas and advice.

I am meeting with my second opinion surgeon tomorrow. The first surgeon wants me to get a TEE this Wednesday, so I am hoping the surgeon tomorrow will have a lot to say.

The first surgeon seemed to think a repair would last 10 - 20 more years. I really just want to get fixed and have them put in me whatever is best. A tissue valve would require coumadin, which from what I have read requires quite a bit of adjusting. Is there a reason these tissue valves wear out so fast? Are they no longer living and receiving nutrients to allow them to grow new cells?

I do not want to have to have surgery again if possible - well, at least open surgery - apparently they are working on valve replacement technology which lets them go through your major arteries and do it from the inside. I am though a bit skeptical of it being able to be done with someone that has a dacron graft. Anyone here know any more about that?

For the Pulmonary valve trials, they are putting them in patients that already have a conduits.

 

[brunoandbear]

I met with Doctor James Kauten today - he was a very nice man who has been doing this for a very long time. He is the head of Cardiac Surgery at Piedmont Hospital in Atlanta.

He told me that I would need my root, ascending aorta, and the base of the arch replaced with a graft and he said based on my age, he would not even want to try and repair the valve due to moderate leaking and would rather put in a Carbomedics Mechanical Valve. He took plenty of time to listen to our questions (God must have been with us today because he allowed my wife's school to be closed so she could come to the appointment!).

Dr. Kauten put me on Toporol today and would like to do a CT-Angio scan on me asap - hopefully they might be able to do it tomorrow. Tentatively he has me scheduled for surgery on the 19th, but he said depending on the results he could schedule me in earlier if needed. If the CT Scan shows much change versus the one we did three weeks ago he wants to do it sooner.

I have been in quite a bit of back pain in the middle of my spine since last night. My wife rubbed one side and it feels better after she did that but the right side has been hurting all day - my Tylenol has also worn off. My blood pressure was low when they checked it at 116/60, but my heart rate was higher than normal at about 100 versus 80 normally.

We will pray tonight and see whom God thinks we should have do the surgery. I really do think there was a reason he made it so my wife could come today. Doctor Kauten seemed to not be in a hurry at all and was very comfortable to meet with us.

 

[brunoandbear]

Today I had my TEE - the valve looked pretty good with only mild leakage. The aneurysm measured 5.1 to 5.2 at its biggest, and stopped before the aortic arch. My sinuses of valsalva also looked good. I am still waiting for my surgeon to call me with the results but the test but the doctor in the room told me what they found. They also administered a small amount of versed and a derivative of morphine for the test - I told them just a small amount, so I was awake during the whole test.

Things got a little odd this afternoon after the test. At about 3 PM I started feeling very off, very weak and anemic. At about 3:45 PM I started shaking rather hard, and got a bad case of the chills. My temperature began to climb from 99.5 to 101.4. I never shake like this before, but I felt very cold on the inside. I checked the mirrors and my color was normal so I called the TEE lab at Emory and they said it sounded like I was coming down with a virus. My heart rate was speeding up to about 100 beats per minute at the time.

I then got in the car at about 5 PM and raced over to my regular doctors office while calling my surgeons nurse. She said it sounded like a virus as well and told me that going to my doctor was the best thing I could do. The shivering had stopped that point and when I arrived he saw me a couple minutes later. I told him all about the surgery I am going to have soon and the test I had today plus what they gave me. He checked my sinuses, my throat, my pulse, my temperature and listened to my chest while breathing and not breathing. When I got there my temperature had dropped back down to 97.1 degrees. He checked it with two different thermometers ever. I had stopped shivering by then. My blood pressure was 104/80 and my heart rate was 100 bpm. He then checked me for the flu and that came back negative as well. After running all the tests, I had been there for about twenty five minutes, he took my temperature again and it was back up to 101.7. He thinks I have a virus and gave me a prescription for Zithromax. He also told me to take my beta blocker and a tylenol to keep the fever down.

So, now I am back at home, I no longer have the chills, I am pretty warm, but I have a fever and my heart rate is really fast at about 100 beats per minute.

 

[Maryka]

Take care of yourself! Fevers will make your heartrate go up. Still, isn't it strange the fever came on after your test. I hope you have someone at home with you to keep an eye on you!

Cheers, Maryka

 

[brunoandbear]

The fever has gone back to normal I took Toporol, Tylenol and Zithromax antibiotics and I am feeling like I am not even sick right now. I've been taking Tylenol every four to five hours. A part of me wonders if I had a reaction to the Morphine yesterday...

 

[MIKE69]

surgery

surgery

Brian jut had the same surgery in April. have you gone in yet??

For the past five years, the doctors have been following an Aneurysm of my ascending Aorta. It stayed at 4.5cm for the last four, jumped up to 4.65 and in the last eight months has grown to 5.6 cm. I have had a lot happen in the last eight months - my dad passed away in August (who had his valve replaced in 98), my company was sold, my business imploded for a while and I'm just wondering if any of that had to do with the sudden increase. My eating habits certainly went downhill during all of this.

Regardless, I got the CT results last Monday, a week ago, and they didn't even have to tell me when reading the numbers what would need to be done. I knew when they said them that I'd have to have surgery soon. I have been going to Emory University's clinic since I was a child - I am 33 now, and learned about my bicuspid valve when I was three years old. I have known all my life I would have to have surgery at some point, although I assumed it would be in my 50's, not my 30's - and it still would have been that if it were not for the Aneurysm that has formed.

For the last eight years I have been in pain off and on, usually for a few months at a time and sometimes bad pain, sometimes very mild. Typically I'll feel burning down my left arm and in the hand, stabbing in my chest, a dull pressure or burning feeling in the middle of my chest, a pulsing stab on my left and right side and occasionally a burning in my neck. This has been going on for years - and recently, I developed some sharp pulses through the sides of my neck of pain, along with squeezing that comes and goes in my neck as well, especially when I am more active than sitting still. I was expecting when I went in for this CT scan for things not to be that good, although I was telling myself that I was going to see it shrink rather than grow due to taking copper supplements for the last 5 months. A friend of ours has aneurysms and he said that taking copper helped shrink them considerably. Well, I don't know how much benefit it gave me but mine has grown.

I'm at the point where I am meeting with the surgeon next tuesday - Doctor Edward Chen, and getting a second opinion from Doctor James Kauten. Chen specializes in Aortic repair and my cardiologist highly recommends him. The surgeon, in our very brief conversation said I need to have surgery in the next two to three months and does not think I need to have it right now. He also wants to keep my bicuspid valve in and put in a dacron tube to remove the aneurysm. It starts at the root and goes up to just before or where my arch starts. I would like to get the surgery done now and the waiting is really hard on my anxiety. He said my valve looks good and is leaking by a small amount, and it should last me 10 - 20 more years.

The thing that I'm curious about is the pain. Is it normal to experience pain like I have with this kind of aneurysm? The doctors have not placed me on blood pressure reduction medicine but I am not sure if they should or not. I am 5' 10, 162 lbs, I haven't exercised much in the last eight months so I am out of shape, but do not drink, do not smoke and have modified my eating
habits (thanks to my great wife) in the last week to small portions, several times a day. I've read about the surgery on many different places on the net and this one seems like a warm, kind hearted place filled with good people. I wanted to share with you what I am now facing and perhaps seek your thoughts and ideas about it.


- Brian

 

[ALCapshaw2]

The first surgeon seemed to think a repair would last 10 - 20 more years. I really just want to get fixed and have them put in me whatever is best. A tissue valve would require coumadin, which from what I have read requires quite a bit of adjusting. Is there a reason these tissue valves wear out so fast? Are they no longer living and receiving nutrients to allow them to grow new cells?

I do not want to have to have surgery again if possible - well, at least open surgery - apparently they are working on valve replacement technology which lets them go through your major arteries and do it from the inside. I am though a bit skeptical of it being able to be done with someone that has a dacron graft. Anyone here know any more about that?

I reviewed this thread after seeing the recent inquiry about whether you have had your surgery yet.

Just in case you have not, the above paragraph indicates that your understanding is backwards.

Tissue Valves do NOT require Coumadin, but WILL wear out, and wear out Faster in Younger Patients.

Mechanical Valves require AntiCoagulation Treatment (Coumadin/Warfarin) but are designed to last longer than anyone would expect to live. Pannus Tissue Growth around the valve (mechanical or tissue) can create the need for replacement. The On-X Valve has a Barrier to retard/prevent Pannus Tissue Growth impingement.

The Surgeons at Emory University should be Very Familiar with the On-X Valves since they are sponsoring a study of them with Low/NO AntiCoagulation for Low Risk Patients.

SO, have you made your decision?
Have you already had your surgery?
Many Curious Minds on VR.com would like to know!

 

[lilteach3234]

I reviewed this thread after seeing the recent inquiry about whether you have had your surgery yet.

Just in case you have not, the above paragraph indicates that your understanding is backwards.

Tissue Valves do NOT require Coumadin, but WILL wear out, and wear out Faster in Younger Patients.

Mechanical Valves require AntiCoagulation Treatment (Coumadin/Warfarin) but are designed to last longer than anyone would expect to live. Pannus Tissue Growth around the valve (mechanical or tissue) can create the need for replacement. The On-X Valve has a Barrier to retard/prevent Pannus Tissue Growth impingement.

The Surgeons at Emory University should be Very Familiar with the On-X Valves since they are sponsoring a study of them with Low/NO AntiCoagulation for Low Risk Patients.

SO, have you made your decision?
Have you already had your surgery?
Many Curious Minds on VR.com would like to know!

Al,
Why don't they just use the on-x on every patient that gets a mechanical?

 

[ALCapshaw2]

Al,
Why don't they just use the on-x on every patient that gets a mechanical?

That's a complex question that involves many aspects of the Business and Technical Decisions of Hospitals and Surgeons.

Many Hospitals put their Valve Business up for Competitive Bids, often selecting 2 Mechanical Suppliers and 2 Tissue Suppliers. I would expect that COST is a STRONG Factor in the selection process. The bigger companies can be more cost competitive.

Many Surgeons stick with their preferred ("tried and true") supplier(s) for various reasons.

The argument that On-X is "too new or too untried" is wearing thin after 12 years in the World Market (and 7 years in the USA) with over 70,000 On-X valves sold in over 60 countries.

 

[fabyan64]

According to a number of surgeons I spoke with the On-X valve is not yet used/preferred by all surgeons because it is still relatively new versus the St. Jude. I think that is the main reason, but of course, we can't forget marketing, etc., that goes with the heart valve business.

 

[Roger Frank]

My Surgeon stated they normally use the "lowest bidder." (it's a teaching hospital) I asked if he would consider the use of an On-X valve? It was not an issue and the installation kit was ordered. (Personally, I didn't care to have the lowest bidder device in my chest) BTW - I was his first On-X implant (guess some has to be first) but was informed after surgery they'll be using more On-X units.

In the end there may not be that much difference but I feel much better about my decision...

 

[brunoandbear]

SO, have you made your decision?
Have you already had your surgery?
Many Curious Minds on VR.com would like to know!

Yup, I've had my surgery and it was two weeks ago.

Read all about it here:

http://www.valvereplacement.com/forums/showthread.php?t=30436

I ended up going with the surgeon's and Cardiologist's recommendation, which was to try and repair the valve. I put a stipulation in, that if they could not repair it, they would put in a mechanical valve. I put it in the man above's hands really. When I woke up, I was told it was repaired, along with the graft being put in.

So... I still have my own valve.