Unecessary surgery at this time??????

[judy13]

I'll try to be brief, but very confused. As I mentioned before have had alot of doctors reviewing my case. Went to specialist at Loma Linda University Medical Center (for those of you not familiar, they are well known in so cal for their heart institute) today for TEE. The doctor himself did an Echo which lasted over an hour, followed by TEE. There has been much confusion about vegitation on my valve vs calcification. He said I had to have had rheumatic fever as a child. He said my aortic valve had some calcification with mild regurgitation. He said at this point he would not recommend surgery, as I have been asymptomatic and all numbers were good, heart functioning well. I had been in the wait and see mode for a year and a half when I went to the hospital in June of this year. No significant findings or any changes. He reminded me that I will need AVR sometime, but at this point he does not feel it is necessary. He relayed all this info to my cardiologist, whom I have stated before does not seem to have a mind of her own, and alas she agrees. Don't forget she agrees with whomever she is talking to at the time. He felt I should wait, however my cariologists says its already set up you might just want to get it over with. Wish she was in my shoes. I have two cardiologists saying because of my age and current findings I can wait, and one saying may as well get it over with. Also discussed risks vs benefits of waiting vs not. I know I will need surgery eventually, but with new info unsure what to do. My surgeon is out of town and has know idea whats going on, but this cardiologists says their surgeons agree to wait.

 

[Superbob]

Of course as a non-medical person, I can't tell you whether you ought to have the surgery now or wait a while. But it seems to me one immediate need is to get a cardiologist in whom you have trust. If your primary cardiologist just bends to the opinion being expressed to her at the moment, that's not good. I guess as of now, your surgery date of Aug. 11 is off? Can you ask the surgeon to review this latest data and provide his professional assessment?

 

[judy13]

I have not canceled anything as of yet. Still trying to determine if i should do it now rather than later. I only have two more pre-op tests and dont know if I want to go through this waiting game again. Also they are saying if It can be delayed could go for tissue valve if I am fortunate enough to go that long. Although mechanical has not really been an issue for me. I just want to make an informed decision and they need to know by friday.

 

[Lily]

Hi Judy - This must be a difficult time for you. I'm like Bob, a non-medical person.

Your said your surgeon is out of town? Was the specialist you saw today a surgeon? Second opinions may be an option for you?

For what it's worth, my first cardio said he didn't think I needed surgery. But I felt so very unwell and my echos were bad so I researched excellent and highly recommended surgeons and finally decided to get their opinion. I thought, "Can't hurt; might help." When the first one said surgery, I didn't want to just blindly run on his opinion, so I ended up consulting with three surgeons because I wanted to be sure.

If you have a little time left before you need surgery, maybe it will be time well spent in preparing. Best wishes to you

 

[ALCapshaw2]

In my Non-Professional Opinion, I believe that Surgeons have a 'Better Feel' for judging the timing of Surgery. They are the ones who actually 'get in there' to FIX the problem and are more familiar with the Risks and Benefits of Surgery, not to mention knowing what they can (and cannot) do.

Once Cardiologists have diagnosed your Heart Condition, there is little they can do beyond medicating to possibly delay the need for surgery. Delaying Surgery may or may not be a good idea, depending on the progression of the disease. At some point, Permanent Damage can be done to the Heart Muscles and walls which is why it is wise to monitor your condition frequently (at least annually and preferably semi-annually once you are 'approaching' well known 'triggers'. I just happen to believe that the surgeons have a better perspective on when to proceed, especially surgeons with Lots of Experience dealing with Valve Issues (as opposed to surgeons who spend 90% of their time dealing with ByPass Patients.).

'AL Capshaw'

 

[Luana]

I think if it were me, I would want one more opinion. I know Loma Linda is very well respected. I don't like your cardiologist's attitude of you may as well get it over with now. Your situation makes me feel uneasy now. I would imagine you probably feel totally unnerved.

 

[Bill B]

It sounds like no one is saying you need to go ahead. One is saying you might as well, the other are saying wait. To me they are all pretty close to the same.

You have an unusual situation with the chronic BE. But it sounds like the Loma Linda surgeon really studied your valve carefully and concluded you don't have a vegetation right now.

You mentioned you have discussed the risk/benefit of waiting vs. not. What are they? Wouldn't it be better to operate now when there is probably no active infection rather than at some time in the future when the BE might recurr? Just asking. I don't know what the advantages of waiting are.

 

[Jkm7]

When is your surgeon due back?
I certainly would want his input before making such a decision. The surgery cannot go forward until he returns.
So sorry you are going through all this indecision in addition to the usual stress we all experience.

 

[ejc61]

Hello Judy,
There seems to be too much discrepancy to move forward with this surgery. In my case, the cardiologist thought it was a good time for surgery because I'm still young BUT that my atrium was getting bigger, 6+, and my mitral valve was torn. Two other surgeons agreed with this, so I proceeded and I believe was the correct decision. All other signs were asymptomatic. Oddly, I too have some tiny regurg going on with the aortic valve IIRC but no mention of surgery was discussed at this time.
I would get your surgeon's final analysis after reviewing or consulting with the specialist cardiologist that performed the last echo and TEE. You need a clear final statement from the surgeon and specialist and work with that. I would give your regular cardiologist the boot. I would look for another invervention cardiologist, maybe the specialist if he qualifies. I just had to switch intervention cardiologists because my old one seemed to have an agenda, i.e., Everest Clip. I am so frustrated for what you are going through and realize this is a pain. The good thing is that you don't seem to be in a critical position. Keep us posted.

 

[Lynlw]

It sounds like no one is saying you need to go ahead. One is saying you might as well, the other are saying wait. To me they are all pretty close to the same.

You have an unusual situation with the chronic BE. But it sounds like the Loma Linda surgeon really studied your valve carefully and concluded you don't have a vegetation right now.

You mentioned you have discussed the risk/benefit of waiting vs. not. What are they? Wouldn't it be better to operate now when there is probably no active infection rather than at some time in the future when the BE might recurr? Just asking. I don't know what the advantages of waiting are.

I am very happy you got a 2nd opinion, IF you do have BE, that is a riskier surgery that is one of the things that the more experience the surgeons/center has the better the outcome.
First I agree with the others who said you need a GOOD cardiologist that you can trust to actually make their own opinions and not agree with what other decide. I know we mentione that before and you were thinking of switching to a different one after surgery. maybe you should find one now.
Also as other peoiple asked, was this a cardiologist or a surgeon you saw today?
I'm a little confused, The reason I thought you should have surgery ASAP, was more because of the "vegetation" and not because of heart function or other measurements that are usually the reason to have surgery.
Since I'm confused, and could be completely wrong, am I right in the way I understood it, your were given the BE diagnosis, only because they saw vegetation on your valve and NOT because of any other symptons or tests, like a blood culture showing bacteria growing in your blood, elevated white counts that would show an infection some where ect?
Since it might NOT be vegetation, but actually is calcification instead, are they saying you didn't /don't have BE?
IF you don't have BE then that would make a big difference IMO on wether you need surgery now or can wait. I know you said the regurgitation is "mild" but do you have any other measurements, which would help know one way or the other IF you do need surgery now or should wait.
It would be very helpful if you could share what the measurements are for your valve (that I remember you said was tricuspid, does the Loma doc agree?) and Aorta and whatever they want to operate to replace.
But IF you DO have BE, then of course I would want the valve that is infected OUT now to keep the infection from spreading or getting worse ..Which I was confused from your earlier posts when you said you had vegetation for a while but they were just treating it and not recomending surgery.
Was it the cardiologist you don't trust that origonally told you you have chronic BE but they didn't think you needed surgery?

ps Did you get the results of your CT yet?

 

[Bill B]

Maybe because I don't remember what might have been said in previous threads, I'm not sure now what your status is. Do you have "chronic BE" as stated in your sig or is that now in doubt based on the Loma Linda results?

 

[daveguy14]

I've had this problem before. Timing is very difficult in many patients, particularly asymptomatic ones. I recommend getting a second opinion, perhaps from another institution so they can look with as fresh eyes as possible.

 

[judy13]

I am not sure I can clear this up or not. CT results showed no coronary artery disease and thickening of aortic valve. Had sed rate and C-reactive protein test to rule out inflamation. In 2008 when i was first diagnosed had blood cultures etc. No infection. The cardiac interventionist who read my CT scan did the echo and TEE yesterday said i had calcification on aortic valve,and believes I had to have had rheumatic fever as a child. He said the thickening appeared solid and minimal stenosis. He said no other abnormalities of heart and mild/moderate regurgitation. He felt that I could wait on surgery and just be monitred. My cardiologist on the other hand wont make any recommendation she says it up to me to have it as scheduled or wait. I did not get a chance to talk to the doctor after the TEE as he was on the phone with my cardiologist and I was still kind of out of it. (love that versed) so I have a call out to him and my GP is also going to talk to him and get back to me.

 

[Lynlw]

I am not sure I can clear this up or not. CT results showed no coronary artery disease and thickening of aortic valve. Had sed rate and C-reactive protein test to rule out inflamation. In 2008 when i was first diagnosed had blood cultures etc. No infection. The cardiac interventionist who read my CT scan did the echo and TEE yesterday said i had calcification on aortic valve,and believes I had to have had rheumatic fever as a child. He said the thickening appeared solid and minimal stenosis. He said no other abnormalities of heart and mild/moderate regurgitation. He felt that I could wait on surgery and just be monitred. My cardiologist on the other hand wont make any recommendation she says it up to me to have it as scheduled or wait. I did not get a chance to talk to the doctor after the TEE as he was on the phone with my cardiologist and I was still kind of out of it. (love that versed) so I have a call out to him and my GP is also going to talk to him and get back to me.

I think it is a good idea to talk to the Cardiologist and your GP, before you make your decision about whether to go ahead with surgery or wait. I would really find out wether the believe you have BE or not. Did you get the sed rate and C reactive protien results yet? IF all the test now and in 08 were negative for infection and the diagnosis was made based on the echo, I wouldn't be surprised to find out you do not have chronic BE. Also I would ask about the measurements of your Aortic valve, the opening ect, since that plays a big role in wether you need surgery now or if it is too early.
Also IF you do have BE and want to go ahead with surgery, I would also ask the surgeon if he has alot of experience operating on poeple with BE
It must be even more frustrating since your surgeon is out of town and you can't ask him his thoughts.

 

[Lynlw]

Hi Judy, I was just wonderring if you were able to talk to the cardiologist or your GP?

 

[ALCapshaw2]

Judy,

I get the impression that you do NOT have copies of your Test Reports (Echo, TEE, CT, etc.).
It would be Very Helpful to obtain copies of those reports. Did anyone tell you the Effective Area of your Aortic Valve? Many surgeons use 0.8 sq cm or less as their 'trigger' for recommending surgery. I'm not sure what the trigger is for regurgitation.

I'm thinking it would be best to see a Very Experienced Valve Surgeon, preferably at a Major Heart Hospital, for another opinion. Typically, the vast majority (90% or so) of patients seen by Cardiologists have Coronary Artery Disease. Less than 10% are Valve Patients. Surgeons at the larger Heart Hospitals get the more compex surgery patients.

What part of California are you in? Dr. Laks at UCLA and Dr. Miller at Stanford are Nationally Known Surgeons with excellent credentials and experience. Did you ask 'your surgeon' how many Aortic Valve Replacement Surgeries he has performed (last 6 mos, last year, total)? The Top Valve Surgeons typically perform over 100 (or 200 or more) per year.

'AL Capshaw'

 

[judy13]

I did talk to the cardiac interventionist who performed the Echo and TEE and my GP. They have sent reports to surgeon who will be back on Monday. They both feel the surgery is not necessary at this time. I do have the Echo and TEE reports. Three pages, echo measurements all with in normal limits. Most significant findings are thickening of aortic valve with moderate regugitation and patchy calcification with good systolic opening. While I wait for them to decide what to do, i am still scheduled for ABG's and PFT on Monday. They said they would let me know Monday morning final decision. In the midst of all of this I had a follow up appt with my GI doc. I have microscopic colitis which is thought to be linked to celiacs and I believe it was Penny who said she had to go with tissue valve due to celiacs and absorbtion issues. I told my GI doc this and he said he would do blood test because my endoscopy had showed damaged villi. He said Im sure you dont have it but will test. Had this done with pre-op blood work. He called me last night and confirmed I had celiacs. I dont know how much more I can handle.

 

[Lynlw]

I'm sorry to hear you now have celiacs to deal with. It does seem like people are usually hit with a couple things to deal with all at the same time, when you are going thru a tough spot. I guess the good part is it WAS diagnosed now, incase it plays a part in your valve choice.
Did you find out if they believe you DO have chronic BE or not? Hopefully since your numbers are "normal" and it looks like you might have calcification and not vegitation, then you won't need surgery right now . (IF that is the case I'm so glad you went for a 2nd opinion) IF you want to post any of your results for the valve measurements or Aorta, I'm sure people can help with wether you are close to the numbers most people go by for deciding when to have surgery (unless you DO have BE, then it is different)

BTW I think Loma Linda is a very good heart center, I don't know much about the other place you are going, but even living in NJ, I've heard many good things about Loma Linda's heart surgeons (altho I've heard complaints about the food and what they will or wont serve, not your normal hospital food complaints )

 

[Lynlw]

I was wonderring what the surgeon said, are you still having surgery this week?

 

[Penny]

Yes Judy I have celiac too. That was what made me go with the tissue valve. Its strange because one of the girls in my doctors office is having AVR and she too has celiac. I wonder what the stats are in regards to how many celiacs need OHS. If you have any questions, send me a msg and I will try to answer them for you. I too am curious whether or not you are having surgery for you show on the calendar as having it tomorrow.. hope to hear from you soon.