surgery soon

[901]

I'm new to this site and I need surgery soon according to the surgeon. I'm 48 and I have an ascending aortic aneurysm that was measured at 6.4 cm about a month ago. This was a step change from the previous CT about a year and a half ago. They have measured my aortic root at 5.4 cm (TEE) and told me that my aortic valve is leaking moderately and that my Mitral Valve is deformed (MVP) and leaking severly. I'm also in continous Atriel Fibrilation. The surgeon has recommended two St. Lukes replacement valves in addition to the aortic dacron graft and a MAZE procedure to address the AF. As far as I know, I don't have any symptoms other than possibly IBS (I don't know how to relate it to any heart conditions). I was convinced that mechanical was the way to go until reading a lot of threads on this site. I told the Dr. I only want him in there once, this fell right in like with the St. Judes recommendation.
The surgeon tells me that he does approximately a dozen of these multi-condition repairs per year. He also trained at the Cleveland Clinic. I see that the Drs. from the Cleveland Clinic always recommend high volume centers for heart surgery. How much is high volume? I live in a low population density area with only one heart hospital for the whole state. The surgeon told me that each of the surgeons at this heart hospital do about 300 surgeries per year. Is that high volume?
I've been on Warfarin for awhile and it doesn't seem to be any big deal except I despise having to get stuck every month to check the INR. I really thought this was an inconvenience until I saw my brother-in-law, who is diabetic and has to stick himself 6 - 10 times a day.
I'm all over the place emotionally and can't decide if I should be getting another opinion or getting on with the surgery. My wife is in a panic because the aneurysm is so big and she is afraid about anything will cause a rupture.
I've never had major surgery and I don't like any unnecessary cutting. The surgeon has said that he will try to repair the valves and may be able to do the MV. He isn't optomistic about repairing the aortic valve. He asks what is the point of repairing one if the other one will be mechanical, I'll still be a lifetime rat poison user. Looking over some of the threads on this site, it looks like there are at least a few double mechanical valve patients out there.
What about the ON-X vs. the St. Judes? Are there any performance characteristics that can be compared?
I'm currently scheduled for late July but my wife would prefer ASAP. Any recommendations?
I'm also afraid that after surgery, I'll have some post-op condition that I don't have to deal with now.

 

[jeffp]

Sounds like the aneurysm is rather large. I personally would not be comfortable waiting until late July. A second opinion is really never a bad thing, sometimes is in agreement, sometimes not. Its a good way to get another view as much of medicine (as to when, etc) is a judgement call to some degree. On the On-X vs the St. Judes, either is a good choice of mechanicals but you may not have a choice of both at many facilities. They need to keep a whole range of sizes in stock and the duplication can be financially not feasable for even larger hospitals. The surgeons experience with each valve is important to. They are handled similarlly but there are subtle differences in technique with each. You don't want to be the 3rd guy he puts that type of valve in. It is scary major stuff, so don't be embarassed to be afraid. My mitral valve went so fast, I didn't have time to dwell on being afraid. (Actually, now I'm kinda freaked out a bit by how mentally at ease and comfortable I was rolling into the OR before the meds.) You really need to be comfortable with your surgeon. If something just dosen't feel right, trust your gut. Don't worry about offending or bothering anyone, this is one time in your life to be selfish.

 

[ALCapshaw2]

GOOD Questions 901 !

One of our members, Walter Weir (see Members List) had his surgery at Bryan Hospital in Lincoln, Nebr. You may want to contact him about his experience there.

Regarding your surgeon, 300 surgeries per year is a good number, BUT, with your aneurism and multiple valve issues and , you may want to consider someone who has LOTS of specific experience with those conditions, especially your aneurism. TWO Valves, an Aneurism repair, and a MAZE procedure is a LOT of surgery and will probably require a lot of time on the Heart-Lung Machine.

Your best bet is with a surgeon who is highly experienced in those procedures and highly efficient in his movements (i.e. FAST). The Cleveland Clinic is the #1 rated Heart Hospital followed by the Mayo Clinic at #2. Beaumont Hospital in Royal Oak, Mich (near Detroit) is another excellent hospital. Perhaps our Chicago members can fill you in on their best choices. FWIW, I had my bypass surgery done locally by a surgeon who trained at Cleveland Clinic but was referred to UAB (Univ. of ALA at Birmingham, ranked #13) for my AVR.

The On-X and St. Jude Regent Valves are Third Generation Valves which have improved flow characteristics and claim to have a lower risk of clot formation. Be sure your surgeon is familiar with the Valve you choose and that it is a viable option with your aneurism repair. I would expect every Heart Surgeon to be familiar with the standard St. Jude Valves.

I vote with your wife. At 6.4 cm, I would be looking to have surgery ASAP. The usual threshold for surgical intervention is 5.0 cm. Our moderator, ROSS, is a member of a VERY SMALL group, i.e. Survivors of a Burst Aneurism. I am surprised (and disappointed) that you were not followed more closely, i.e. echo's at least every year or even every 6 months.

The Cleveland Clinic has an on-line Second Opinion Service which you may want to look into. I don't know if Mayo has a similar service or if they require a personal visit. In any case, I would be contacting Surgeons ASAP.

Please let us know how it goes and feel free to ask any questions that come to your mind.

'AL Capshaw'

 

[geebee]

I just want to welcome you and echo what the others have said (although I am not an experienced aortic patient). From what I have read 6.4 is very dangerous. I would seek surgery ASAP.

Best of luck.

 

[ALCapshaw2]

One more comment about your Atrial Fibrilation.

A-Fib puts you at risk for Clot formation and STROKE.
The usual treatment is to be on Anti-Coagulation medication (Coumadin or Warfarin) which protects against clot formation. SO, are you taking either Coumadin or generic Warfarin?

'AL Capshaw'

 

[Ross]

With an aneurysm that size, waiting is NOT something to be doing. Get in as soon as possible or you may not have anything to worry about ever again.

For someone such as yourself, if you could get to the Cleveland Clinic, I'd say do that, but that's not always something that can be done. All I know for sure is that you are in very serious danger and need that thing dealt with immediately.

 

[901]

surgery soon

I've been on Warfarin for just over four years except for 6 mo. or 12 mo. when the Card. took me off. My problems started four years ago when I went in to the local Dr. with a nagging cough that would wake me up at night and then go on and on. I coughed all day and night and was really getting tired from little or no sleep. All in one day I went to work, to the Drs. office to the local hospital for a CT, that never happened, and ended up in the ER in Lincoln. The Card. told me that I had a 3" blood clot in my left ventricle and my EF was 15% and I was in AF. My kidneys were also shutting down, causing my lungs to fill with water. 4 mo. later, an echo test showed my EF at 80%. The Card was suspicious and ordered a MUGA test. The MUGA showed the EF was really more like 60%, and that was when the aneurysm was identified. The blood clot had disappeared and the Card said the aneurysm wasn't bad enough to repair, so we would just watch it. 6 mo. later he took me off the Warfarin because the AF wasn't showing up when I went to see him. He told me that I was fully recovered and that the problems were probably due to a virus. The next time I saw him the AF was back and he told me that I'd be on Warfarin forever to prevent clotting. The Warfarin isn't a problem once the dosage gets adjusted. I find myself avoiding lettuce, broccoli and asparagus within about five days of a test because the vitamin K will spike and testing will change to weekly until the INR levels out again. It's hard to make a point of eating about the same amount of high vitamin K foods every day, so I usually don't watch it that closely.

For three years the aneurysm stayed the same size. Then, in April, the CT showed the big step change (a year since the previous CT showed it the same as when initially found). It had changed in about 12 months from something like 4.8 to 6.4.

I don't feel uncomfortable with the surgeon but I wanted to get an independant opinion of his work so that I could say that my opinion wasn't clouded by the results that I want. The surgeon is most concerned with developing a disection or possibly a rupture. I asked about local support groups and the hospital gave me the patient confidentiality snow job. Since I initially got sick four years ago, I haven't found one heart patient that wouldn't talk about their condition and some of the problems that they've encountered. Maybe the ones that don't talk won't even acknowledge that they are heart patients?

Would Walter be offended if I call him?

 

[Ross]

I highly doubt he would be offended. He may be very busy, so you may want to private message him or email him in advance. Your scaring me! You need that taken care of NOW. I lived through my dissection and rupture. I'm telling you now, you do not want to go there.

 

[Michaelena]

I've been on Warfarin for just over four years except for 6 mo. or 12 mo. when the Card. took me off. My problems started four years ago when I went in to the local Dr. with a nagging cough that would wake me up at night and then go on and on. I coughed all day and night and was really getting tired from little or no sleep. All in one day I went to work, to the Drs. office to the local hospital for a CT, that never happened, and ended up in the ER in Lincoln. The Card. told me that I had a 3" blood clot in my left ventricle and my EF was 15% and I was in AF. My kidneys were also shutting down, causing my lungs to fill with water. 4 mo. later, an echo test showed my EF at 80%. The Card was suspicious and ordered a MUGA test. The MUGA showed the EF was really more like 60%, and that was when the aneurysm was identified. The blood clot had disappeared and the Card said the aneurysm wasn't bad enough to repair, so we would just watch it. 6 mo. later he took me off the Warfarin because the AF wasn't showing up when I went to see him. He told me that I was fully recovered and that the problems were probably due to a virus. The next time I saw him the AF was back and he told me that I'd be on Warfarin forever to prevent clotting. The Warfarin isn't a problem once the dosage gets adjusted. I find myself avoiding lettuce, broccoli and asparagus within about five days of a test because the vitamin K will spike and testing will change to weekly until the INR levels out again. It's hard to make a point of eating about the same amount of high vitamin K foods every day, so I usually don't watch it that closely.

For three years the aneurysm stayed the same size. Then, in April, the CT showed the big step change (a year since the previous CT showed it the same as when initially found). It had changed in about 12 months from something like 4.8 to 6.4.

I don't feel uncomfortable with the surgeon but I wanted to get an independant opinion of his work so that I could say that my opinion wasn't clouded by the results that I want. The surgeon is most concerned with developing a disection or possibly a rupture. I asked about local support groups and the hospital gave me the patient confidentiality snow job. Since I initially got sick four years ago, I haven't found one heart patient that wouldn't talk about their condition and some of the problems that they've encountered. Maybe the ones that don't talk won't even acknowledge that they are heart patients?

Would Walter be offended if I call him?

901
I must agree with everyone else, DO NOT WAIT! I agree with a lot of what Alcpashaw2 said, I am having a similar experience, I am facing multiple valve surgery AVR and TVR, I am also in A-Fib all the time. I have interviewed two surgeons and both agreed that the quicker you are off the heart lung machine the better, yes experience does count, but you must be comfortable with the doc, I was told that since I am looking at two valve replacements and both will be replaced with mechanical prosthesis (St. Jude), I will need blood-thinning (Coumadin or Warfarin) anyway, it would not be in my best interest timewise for the Maze procedure for A-Fib, the percentage of gain is not there for the time it will take. These are tough decisions, at a tough time..

Best of Luck
Michaelena
MVR - St. Jude 1984

 

[ALCapshaw2]

901 -

I'm concerned that your surgeon does NOT appear to be very concerned, i.e., he has not scheduled you for surgery ASAP. He is probably a very good general heart surgeon.

For someone who requires a COMPLEX procedure (2 valves, aneurism repair, and possible MAZE procedure) I think you should be talking with High Risk Surgeons who see the Worst of the Worst on a WEEKLY basis, not just 12 a year. Generally you find these surgeons at MAJOR Heart Hospitals such as Cleveland Clinic, Mayo Clinic, Texas Heart Institute, (another Texas hospital - I don't recall the name), etc.

I tried to not sound alarmist in my first post, but at 6.4 cm (when 5.0 is the surgical threshold) my *guess* is that you are a "walking time bomb" and need to get this repaired NEXT WEEK. What does your Cardiologist or Primary Care Physician (PCP) have to say about waiting until July?

If I were you, I'd be on the telephone TODAY to either your Cardiologist or PCP or local surgeon asking for a referal to one of the Major Heart Hospitals. Most people DO NOT SURVIVE a Ruptured Aneurism. ROSS is one of the lucky few, and he is permanently disabled.

'AL Capshaw'

p.s. I'm sure Walter Weir would be glad to tell you about his experience, but remember, he only had a SINGLE (Aortic) Valve Replaced, was in otherwise good health, and NOT High Risk.

 

[KAJ]

To echo what other members have already stated, do not delay the surgery.
Your aneurysm is big. The more you delay the surgery, you stand the risk of declining health. As I understand it, the healthier you are going into surgery, the better off you will be during and after surgery.

Karl

 

[Sherry]

Wow, 901, that is quite a history. I'm so glad you found your way to this site because now you'll be empowered enough by the wonderful members to at least know that there are other options, out of state if necessary. I would agree with the others. That 6.4 reading is terribly alarming. My problem was with my mitral valve, but from living through aneurysm horror stories, such as Ross's and some of the others, they speak from experience. Seek another opinion soon.

 

[brd]

Ccf

Ccf

I'm new to this site and I need surgery soon according to the surgeon. I'm 48 and I have an ascending aortic aneurysm that was measured at 6.4 cm about a month ago. This was a step change from the previous CT about a year and a half ago. They have measured my aortic root at 5.4 cm (TEE) and told me that my aortic valve is leaking moderately and that my Mitral Valve is deformed (MVP) and leaking severly. I'm also in continous Atriel Fibrilation. The surgeon has recommended two St. Lukes replacement valves in addition to the aortic dacron graft and a MAZE procedure to address the AF. As far as I know, I don't have any symptoms other than possibly IBS (I don't know how to relate it to any heart conditions). I was convinced that mechanical was the way to go until reading a lot of threads on this site. I told the Dr. I only want him in there once, this fell right in like with the St. Judes recommendation.
The surgeon tells me that he does approximately a dozen of these multi-condition repairs per year. He also trained at the Cleveland Clinic. I see that the Drs. from the Cleveland Clinic always recommend high volume centers for heart surgery. How much is high volume? I live in a low population density area with only one heart hospital for the whole state. The surgeon told me that each of the surgeons at this heart hospital do about 300 surgeries per year. Is that high volume?
I've been on Warfarin for awhile and it doesn't seem to be any big deal except I despise having to get stuck every month to check the INR. I really thought this was an inconvenience until I saw my brother-in-law, who is diabetic and has to stick himself 6 - 10 times a day.
I'm all over the place emotionally and can't decide if I should be getting another opinion or getting on with the surgery. My wife is in a panic because the aneurysm is so big and she is afraid about anything will cause a rupture.
I've never had major surgery and I don't like any unnecessary cutting. The surgeon has said that he will try to repair the valves and may be able to do the MV. He isn't optomistic about repairing the aortic valve. He asks what is the point of repairing one if the other one will be mechanical, I'll still be a lifetime rat poison user. Looking over some of the threads on this site, it looks like there are at least a few double mechanical valve patients out there.
What about the ON-X vs. the St. Judes? Are there any performance characteristics that can be compared?
I'm currently scheduled for late July but my wife would prefer ASAP. Any recommendations?
I'm also afraid that after surgery, I'll have some post-op condition that I don't have to deal with now.

901 I am new and still in the waiting room but I have done a lot of research. From all I have read I would say, get thee to the Cleveland Clinic ASAP. God Speed and let us know how you are doing. brd

 

[wweir]

901

901

It?s nice to know you all still remember me. I have been checking the site from time to time, mostly to check up on how Ross is doing. My thoughts are with Ross and his wife.

901 called me today and we spoke for about an hour. He is taking Ross?s recommendation very seriously and I think he will be getting this surgery scheduled shortly. I know he is apprehensive, as all of us were, but I tried to reassure him that these heart surgeons are really wonderful healers who can do miracles in the operating room.

In Lincoln Nebraska we have a brand new and very advanced heart only hospital. If you want to take a look here is the web site. http://www.neheart.com/ My surgeon was R. Kent Jex and he was outstanding, in my opinion. I am coming up on three years in Aug and all is well and ticking softly.

Thanks again for referring 901 to me. I told him to call me at any time with questions that he may have. He was very impressed with the Valve replacement site, he indicated that folks here are very helpful, I agree totally. Hopefully he will get this scheduled and fixed shortly.

Walter

 

[Ross]

Cleveland, Mayo, University of Chicago any of these, but it's very important not to wait. I cannot believe they are thinking of having you wait till next month! This should, in all honesty, be an emergency surgery.

 

[ALCapshaw2]

901 -

A few things you need to know about Heart Valve issues:

First, Valve issues are basically PLUMBING Problems. They can be FIXED and the success rates for first time surgeries is VERY HIGH (98-99%) when performed by experienced surgeons who do these types of procedures on a weekly basis. (I still think you need to be talking with a HIGH RISK surgeon because of your complex list of repairs / replacements).

Second, EVERYONE is scared when facing this surgery but NOT having surgery will GUARANTEE an undesirable outcome and very possibly DEATH, especially if your aneurism bursts.

Third, MANY people experience NO SYMPTOMS (that they recognize) even though their valves may be on the verge of failure. Sometimes the FIRST sign heart disease is DEATH. Do you REALLY want to take that risk?

Fourth, PAIN management following surgery is VERY GOOD. MANY patients report only some 'discomfort' or muscle pain following surgery, nothing that you can't handle so don't use this as an excuse to postpone the inevitable.

I've been through OHS twice (bypass and Aortic Valve Replacement and will likely need a third for my mitral valve. When the time comes, I expect to choose LIFE (surgery) over DEATH (doing nothing).

Perhaps a second opinion might help to convince you to proceed. The fastest way to get one would probably be to use the On-Line Second Opinion Option from the Cleveland Clinic.

Waiting for 'symptoms' to convince you to proceed only GUARANTEES that you will be in WORSE shape by the time you actually undergo surgery, your RISKS will be higher, and your outcome / recovery may not be as successful.

I certainly hope that you take the necessary action to Save your Life.

'AL Capshaw'

 

[901]

surgery soon

I talked to the surgeon today and asked him about the aneurysm size. He told me that it is only 6.1 and not 6.4.
Anyway, I asked for the date to be moved up to this week and he said the best he could do is the 28th. He says he doesn't want any other procedures scheduled the same day in that OR. I took that to mean I'll be on the table for quite awhile. He said waiting three weeks shouldn't be any problem.
I saw that several were going climbing/swimming today and more tomorrow.

 

[geebee]

Well, the 28th is better than late July but I still think you have to be careful until then. Please restrict your exertions and pay attention to any little twinge that might indicate a problem.

Stay in touch with questions - you may have a few.

Best wishes.

 

[wweir]

Congratulations on getting this scheduled. When you know for date and time for sure let me know and I will come to see you in recovery. Who did you end up getting as a surgeon, Jex or Wudel? Both are excellent.

Walter

 

[Nancy]

Welcome 901-

You do have some very serious issues. It's amazing to me that you don't feel very symptomatic. HOWEVER---don't let that fool you into a false sense of security. Keep your exertions to a bare minimum and stay away from anyone who is sick. This is not the time to pick up a cold or something else that will put further delay on your surgery. The heart can overcompensate for some of the inadequacies and that is why some folks have few symptoms, but it does this by enlarging and when things start to develop, they can do so in rapid fashion, such as the measurements of your aneurysm.

If at ANY time you are feeling that your symptoms are worsening, do not wait around to see if they will clear up. Call 911 and get yourself into the ER, and I'm not kidding.

I really wish your surgery could be moved up more. Take it very easy during the next few weeks.

And keep checking in here every day. I know we'll all be sitting on pins and needles until you can get all fixed up.