When to operate...?

[MikeHeim]

One thing that people need to consider is that the risks associated with surgery versus waiting is not an "either/or" proposition. If you decide to wait, you will still need surgery in the future. In that respect, someone who decideds to wait is risking the 5-7% chance of dissection, plus the 1-2% surgical mortality rate.

 

[ALCapshaw2]

One of our members pointed out that if you wait for symptoms to appear, the DAMAGE has already BEEN DONE.

Just to be clear, I am a proponent of Early Intervention.
Once you know you have a condition that can ONLY be repaired by surgery, I see no benefit in waiting to correct the problem.

The argument of waiting for advancements in technology sounds more like "I'll hang on any excuse to avoid having surgery" than rational / realistic thinking. EVEN IF there are advancements on the horizon, do you want to be one of the EARLY GUINEA PIGS?

Third Generation Mechanical Valves with the hope of eventual aspirin-only therapy are interesting, but it will be several years before that comes to pass, and there is NO reason you couldn't choose one of those valves NOW.

Valve replacement by catheter is another interesting breakthrough being investigated but I doubt that will ever be used to repair an aneurism so you are back to the "tried and true" methods: Open Heart Surgery which presents the LOWEST RISK option.

That's my OPINION.

You are free to make your own DECISION.

'AL Capshaw'

 

[Arlyss]

The Hands that Perform the Surgery

The Hands that Perform the Surgery

Just to add a little to the discussion of risk of surgery versus risk of waiting. The risk of surgery that I would want to understand is the risk associated with the hands of the surgeon that will perform my surgery.

National averages or even combined statistics for several surgeons in the same group are helpful indicators. But each surgeon has their own results and I would want to know what they are.

For a given surgeon, the risk of death or injury during or shortly after surgery may be given. But there is also the longer term - are they following them ?How are these people doing years later?

I would also want to know if I am comparing "apples to apples" - are the numbers I am quoted for the same exact procedure? Surgery on the ascending aorta may seem quite simple - but there is more than one way to do it. What will be done and how well has it proven to hold up in the short and long term? These are things I would want to know. And I would want to know them about the hands of the surgeon I am considering.


Best wishes to all,
Arlyss

 

[rtblount]

rtblount

rtblount

I have read several articles discussing the risk involved in ascending aortic surgery. I have a ascending aortic aneurysm measured at 5.3 cm using a 64 slice CT scan as well as a MRA. I had my aortic valve repalced 9 years ago with a St Jude valve which operates perfectly. I tolerate coumadin well. I am 68 years old in otherwise good health. My cardio and his preferred surgeon are telling me that I should not have surgery at this time because the aneurysm hasn't grown in a year and because the risk in reops in the chest is much higher than initial chest surgery. I can't seem to find any statistics on the risk in redos. Can you shed any light on the subject.

 

[Ross]

I have read several articles discussing the risk involved in ascending aortic surgery. I have a ascending aortic aneurysm measured at 5.3 cm using a 64 slice CT scan as well as a MRA. I had my aortic valve repalced 9 years ago with a St Jude valve which operates perfectly. I tolerate coumadin well. I am 68 years old in otherwise good health. My cardio and his preferred surgeon are telling me that I should not have surgery at this time because the aneurysm hasn't grown in a year and because the risk in reops in the chest is much higher than initial chest surgery. I can't seem to find any statistics on the risk in redos. Can you shed any light on the subject.

I was told 50/50. In all honesty, I think those are the chances regardless of whether it's your first or fourth surgery. In your case, it will be a little more risk because of the procedure used (Most likely Bentall) but hang tight and someone should have some statistical numbers for you. Personally with a 5.3 aneurysm, I think they are flirting with disaster and it should be taken care of immediately.

 

[ALCapshaw2]

RTBlount -

I question your Cardio's and Surgeon's statement that the risks of a second surgery are "much higher than a first surgery".

My AVR was my second OHS (first was bypass). If I remember correctly, my AVR surgeon estimated the risk of morbidity or mortality at 5 to 10%.

We have several members here with 3 surgeries and Joe, Nancy's husband, has had 5 chest surgeries (heart and lung combined).

Yes, the risks go up, but with an aneurism over 5 cm, you are also at a fairly high risk of 'Sudden Death' from a ruptured aorta. Get the numbers for that possibility and then decide. (If I were in your shoes, I would give serious consideration to getting the aneurism fixed ASAP.)

'AL Capshaw'

 

[Kate]

Hi RT

As mentioned above, risks related to aortic aneurysm surgery have greatly improved over the last 10 years, especially at large hospitals that do alot of them. When I had mine done at the Cleveland Clinic, I was told that the risk for someone over 60 is still well under 10% (don't remember if it was 4% or 6%). The rule of thumb for repeat surgery I've heard is that it roughly doubles the risk for a rough estimate of 8% - 12%. Of course, this is for the average patient (whoever that is! ) going to a very experienced surgeon and doesn't take into account any other health problems or risk factors you might have. The actual risks in your specific situation could be quite a bit higher. Still, at least this gives you a ballpark figure. Kate

 

[PJmomrunner]

Rtblount -

If you do searches on PubMed using "redo aortic valve replacement" and "redo aortic valve replacement aorta" and "ascending aortic aneurysm redo" you will find a collective handful of studies of ascending aortic aneurysm resections that were second surgeries. They all cite favorable outcomes, some even state outcomes same as with first surgeries.

Also, if you check out the Yale study MrP provides the link to in this thread, you will find that the combined risk of aortic rupture, dissection or death with a 5 cm aneurysm is 6.5% and when the aneurysm exceeds 5 cm the combined risk rises sharply and reaches 14.1% at 6 cm--if left untreated.

Arlyss' point is especially pertinent in your case. Whose hands perform the operation is key. Please don't let comfort with the known over the unknown affect your choice of surgeons. It may well be that your surgeon recommends waiting because your odds of surviving surgery in his hands are not as good as your odds of surviving if you do not have the surgery. I mean no disrespect to your surgeon, it's just that at a center with a focused interest and specific program in thoracic aortic disease you might be advised very differently.

As Kate mentions, your own general health situation probably has a bearing on the risks as well, but those are issues that may not be diminished with age.

 

[aussigal]

dwb71...

This time last year I didnt even know I had an aneurysm or that my Bicuspid aortic valve would ever need replacing. Now I am 3 months post-op and doing great.

My BAV was still in pretty good condition but my 4.8 annie was worrying me, as my dad had died at 38 of heart-stuff. I decided to 'go early' and get them both fixed at the same time instead of risk waiting.

It turned out to be the right decision. The right side of my heart muscle had thickened and wasnt working properly, so I also got a by-pass in a second surgery. I have no regrets about electing to go early but it was kinda scary at the time to agree to this when I didnt really have noticeable symptoms.

 

[Arlyss]

Redo for Those with Aneurysms

Redo for Those with Aneurysms

It might be helpful to mention something that can be a particular risk for those who have already had a valve replacement and now have an aneurysm. One thing that I would want to know is whether or not my aortic aneurysm was close to my sternum. Sometimes it is, and there will also be scar tissue from the previous surgery. If it is, the surgeon needs to know how to open the chest carefully without cutting into the aneurysm. If the aorta is cut while opening the chest, that would be an emergency right in surgery. There is no need for this to happen, because experienced eyes will see this from the CT or MRI pictures and be prepared before the surgery begins. There should be no surprises about something like this. This is where specialized aortic expertise can make all the difference.

This is one reason I would want my situation evaulated by someone who specializes in the aorta and has successfully identified and dealt with the most complex cases.

Some of you may be familiar with Rachel's experience. If she had not gone to an aortic expert for her redo, she would not be with us today. The judgment and the hands that perform the surgery do make all the difference.

Best wishes,
Arlyss

 

[paulk]

...Yet, many "state of the art" institutions, like the Cleveland Clinic, take the position that it is better to operate on a person that once was thought to be too healthy....

I don't know how closely this relates, as I'm a mitral valver, but I'll share my experience anyhow . I was totally asymptomatic before my surgery, and was moderately fit. Two different cardios recommended surgery within 6 months, as my heart was starting to enlarge, and, as I understand it, permanent damage was being done to the muscle. My older brothers first cardio was more conservative, and only after he got a new cardio did he get a recommendation of surgery 'soon'. While I'm not completely back into shape, others tell me that I'm recovering much faster than my older (by 2 yrs) brother (MVR), and I attribute this primarily to getting surgery on the early side of things. So I am a proponent of getting it done early.

-Paul

 

[Andyrdj]

This thread greatly interests me.....

This thread greatly interests me.....

...as I was returning to VR forums after a long break with tehprecise intention of asking this sort of question.

I'm borderline as to whether I need a new valve. Thing is, though, I'd really like to be able to go back to the gym again and get fit.

My Dad was diagnosed with late onset diabetes, and one way of helping prevent that is by getting plenty of exercise.

Are the doctors looking at the big picture here? I sometimes suspect they have a bit of a parochial viewpoint - "manage the heart as best as possible without thinking about the rest of the body". If I can't vigourously exercise and keep in trim, the health consequences in other parts of the body might outweigh the fact that the heart is ok for now.

 

[Ross]

If the heart is enlarging, damage is beginning. You certainly do not want to wait at that point. Mine went too long and it's never going to be normal again. The ideal scenario is to have it fixed BEFORE any of this occurs. This will give you the best chances at full recovery.

 

[delvalle6]

"If the heart is enlarging, damage is beginning. You certainly do not want to wait at that point. Mine went too long and it's never going to be normal again. The ideal scenario is to have it fixed BEFORE any of this occurs. This will give you the best chances at full recovery."

OK. So if there is enlargement, and the cardiologist says that itwill completely reverse with surgery and that is why we will wait, because there is no real damage, is he just what? I dont have a lot of faith in this hopital as it is, and the more I read the more concerned I get. My son's heart is enlarged- should they be doing something other than monitoring him and gving me the brush off?

 

[francie12]

TO DELVALLE6--Hi, delvalle--I have been reading your posts intently. My son's heart is also enlarged, and we are also in waiting mode. There are many others here much more knowledgeable than I, but I wanted to just share my understanding so far. Hearts do remodel after surgery (and, I would think, particularly young hearts still in growth process), it's just a matter of not allowing them to enlarge past the point where irreversable dilation and hypertrophy has occurred. This is agreed by everyone, the question being just where is that point. In pediatrics the measurements are relative to body surface area (BSA)--a smaller body has a smaller LV size at which surgery is considered necessary. In computing this and and determining the timing of surgery, I want a cardiologist who has a great deal of experience and a high sucess rate. I switched cardiologists until I found one I trusted enough to be on top of current research on BAV and to prescribe the necessary tests. (Matt has an MRA this Tues.) I also researched surgeons until I felt I had the very best one for my son's particular problems (Dr. Bove or Dr Quaegebeur). I now feel guardedly comfortable about waiting until the drs. say it is time for surgery. Again, I share the opinion of others that it is of the utmost importance to go with cardios. and surgeons as experienced as possible and those whom you trust.

I'll be looking for your posts and sending you the best of wishes all the way.

Jane (Matt F.'s mom)

 

[Karlynn]

If the heart is enlarging, damage is beginning. You certainly do not want to wait at that point. Mine went too long and it's never going to be normal again. The ideal scenario is to have it fixed BEFORE any of this occurs. This will give you the best chances at full recovery.

Yup, what Ross said.

My surgery was almost 15 years ago, I was 32 when it was done. At that time the school of thought was even more erring on the side of waiting until you see damage being done because they knew for certain that technology held a lot of promise. So that's what they did. Although I am very active and don't have to eliminate activities because of my heart, it was damaged and I notice the affects daily. Thankfully, today the school of thought is to act before damage is done. Valves, no matter which one you choose, have come quite a ways since I had my surgery and having any of them installed is much preferable to having to live with a damaged heart.

 

[delvalle6]

The question is -- how long do we wait? I'm getting answers from the clinic that are either vague and uninformative, or grossly complicated and virtually impossible to interpret. My son is only four...I would like to think that this is never going to happen, but it is inevitable and I have accepted that. I am also looking at different ways for the procedure to be performed. If they could come up with a less invasive method before he needs the surgery, I would be very happy. My husband has been very strong through this, and I am worried about him- he still says that maybe surgery won't be necessary. I want to find a source where we can sit down, get some diffinitive answers and actually comprehend what we are being told. I am not a good "waiter.

 

[ALCapshaw2]

delvalle6 -

My recommendation is to find a GOOD EXPERIENCED Pediatric Cardiologist and Pedidatric Heart Surgeon.
ASK about their experience with children of the same age and their LONG TERM Success Rates.

THEN, I would let the SURGEON decide on the best timing.

'AL Capshaw'

 

[francie12]

Pediatric cardiologists must have an objective scale they refer to when looking at LV enlargement/BSA and timing of surgery. Symptoms or lack thereof are figured in too. I know that a LVdd of 5.6 and a BSA of 1.46 means you have some waiting time left. I'll ask about this on Tues. at our MRA!

 

[Lynlw]

it IS alot different for the kids, Justin's heart has been very enlarged between surgeries, but so far has been able to get better after surgeries, there is alot of difference between kids who are still growing and adults,
I know you were going to get 2nd opions have you been able to get that started? lyn