aneurysm 5.1 what to do

[scuba_898]

I've got a lil update for yall and i need a lil advice even though i think i know the answer. I have decided to have dr. Ed Chen perform my surgery he is with Emory Univ in Atlanta. he wanted me to have some additional test done. So yesterday i had a TEE and a Chest CT done. the doc that performed the TEE spoke with chen briefly following the TEE, he relayed to me that chen thought he could still perform the valve-sparring procedure on me. I do not know the results of the CT. The TEE did reveal an aneurysm at 5.1cm. I have read were 5.0 is the magic number. before these tests i was kinda penciled in for surgery the 2nd week of Nov, but was told that he could squeeze me in before if needed. now that i know of the anuerysm and the size, I kinda want this done ASAP rather than in another six weeks. do you all think that is smart or would i have nothing to worry about waiting that long. I am still waiting to hear from chen. I debated on posting now or until i talked to him but i like talking about things and yall are such a big help.

 

[mainframe]

I would let the doc's determine the need to move the surgery up. If you were feeling poorly then that would be a reason to move the surgery up. My aorta is at 4.9 and my cardio mentioned it could stay at that measurement for 10 years. They don't know.

I do know a surgeon that is supposed to replace my valve in a couple of weeks is getting cold feet about touching the aorta. I'm not happy about that (the prospect of a 3rd surgery someday) and I'm considering a 10 day surgery/vacation soon in Cleveland.

 

[skeptic49]

I kinda want this done ASAP rather than in another six weeks.

Looks like you wrote your own RX! I agree with you. I'd ask if sooner were possible.

Best wishes,

Jim

 

[ALCapshaw2]

There are at least 2 problems with statistics.

#1 - There is NO Hard and Fast break point above which you are in danger and below which you are safe. The probabability is a Continuous Function (not necessarily linear) with Very Little Difference between 4.9, 5.0, and 5.1. Are you aware that Ross's Disection occurred at 4.7?

#2 - You KNOW that you need to have your aneurism fixed.
SO, what is the benefit of waiting? Personally I see NONE. You could ask Dr. Chen for his opinion on the Risk of Surgery (which you WILL face at some time regardless) vs. the Risk of Rupture or Disection, not to mention the AGONY of 'Waiting for your internal time-bomb to go off'.

YES, I am Biased in favor of SOONER IS BETTER when you know that Surgery is the ONLY way to FIX the problem.

From what I hear, Dr. Chen is 'The Man' for surgery of the Aorta in the SE.

'AL Capshaw'

 

[tobagotwo]

Scuba_898, my opinion seems to fall into the same basic camp as Al Capshaw's.

As far as Mainframe, it would be medically negligent (at the very least) to do the valve without the aorta replace/repair if you're at 4.9. It would be insane. Worse, the work done on the valve not infrequently causes a weakened aorta to begin to rip. The repaired valve might become your aorta's undoing.

If the surgeon you have set up is planning only the valve, please consider dumping him and getting someone who knows how to do surgeries involving the valve and aorta. And Yes, the Cleveland Clinic is certainly a good place to find someone with those qualifications.

Best wishes,

 

[Danny]

Scuba, for all its worth... i was at 4.9 in Feb. New test in August said 5.2 . Surgeon here wanted to wait another 6 months. Long story short, im having surgery in 12 days in Texas. I couldnt imagine waiting anymore. The waiting so far has been the worst for me. Its amazing what the mind can do to you when you are waiting for "somthing" . Get if fixed. I cant wait to get mine fixed and move on with my life.

 

[ccummins]

Hi Danny. Glad you moved it up. As long as you have everything in order ... the sooner the better. Waiting sucks! I am guessing waiting wouldn't have hurt but you never know. For reference, I found out in January I was at 5. My cadio and surgeon said I could wait until after summer if I needed to. They didn't think it a big risk. But there is no way I would have waited! The anxiety might have killed me.

 

[ALCapshaw2]

Note to MainFrame -

I missed your comment about your surgeon's reluctance to address your aortic aneurism and only replace/repair your valve.

To my mind, that is a BIG WARNING FLAG that this guy does not have the experience / expertise to be doing the more complex Aorta Surgery.

RUN, do not walk, to find another Surgeon who has the Knowledge and Experience to address both your valve and aorta issues.

One of the BEST Aorta Surgeons in the West is Dr. Craig Miller at Stanford. Another is Dr. Laks at UCLA.

I'm thinking Dr. William Ryan in Dallas is another.
I'm not sure who the Aorta Expert(s) is/are at CC or Mayo but I'm sure they have one or more.

I'm thinking someone who does 100 Aorta Surgeries per year would have pretty highly developed skills. I would get up and leave if the surgeon(s) you talk to only do a few per year.

'AL Capshaw'

 

[Star54]

I totally agree with AlCapshaw, my aneurysm was 5.0, on it's way to dissecting....I wanted it out as soon as possible, and I picked the right surgeon who specialized in complex thoracic aortic surgery as well as being one of the best Mital Valve surgeons...

Linda

 

[ccummins]

I totally respect others feelings on not replacing your valve. That being said, it was the right choice for me to keep my BAV and repair my aneurysm. My BAV is still in very good shape and could last me many decades. According to my cardio and surgeon it would last longer then a tissue valve. That is why I chose a valve sparing surgery.

 

[StephR]

My aneurysm measured 5.1 and I was advised to get it replaced within 6 months as there are too many variables and no data to determine the point at which it could rupture/dissect. I ceased my physical activity and opted for surgery in 2 months as the timing fit best into my schedule. Definitely a personal decision on timing, but I agree with Al Capshaw and would highly recommend seeing a top surgeon whom can address BOTH your aorta and valve issues.

 

[mainframe]

Apologies to scuba-898 for hijacking the thread, but I do appreciate the advice. I know I want a mechanical AND have the aorta fixed. Don't want to do this again in 7 years or less which is how long the tissue valve lasted.

The surgeon talked about doing 95 percent tissue values and is making an effort to talk me into a tissue valve. How cummadin will ruin my lifestyle, blah, blah, blah...

 

[ALCapshaw2]

Apologies to scuba-898 for hijacking the thread, but I do appreciate the advice. I know I want a mechanical AND have the aorta fixed. Don't want to do this again in 7 years or less which is how long the tissue valve lasted.

The surgeon talked about doing 95 percent tissue values and is making an effort to talk me into a tissue valve. How cummadin will ruin my lifestyle, blah, blah, blah...

That is Strike Two against this Surgeon. In my NON-professional opinion, this surgeon is wasting your time and risking your life trying to push you into doing only what he knows how to do.

Call Dr. Craig Miller at Stanford. He is one of the Best of the Best. Or at least find a closer surgeon who knows how to recognize the signs of connective tissue disorter in the aorta and how to repair / replace it and does this say 100 times per year.

'AL Capshaw'

 

[scuba_898]

thanks for all the advice guys. I did plan on having at least some of the aorta replaced during surgery. my big concern is i don't know how quickly this thing is growing. I know everyone is different and different tests measure differently. I was diagnosed with BAV in early March, at that time i was told i did not have an anuerysm. About a month ago i had a 2nd echo done and was told to have a mild uniformly enlarged aorta, I got clarification on what that meant from the doc, yes an aneurysm. then wednesday i had the TEE and was told 5.1cm. So i just don't know how quickly this thing is growing. I am penciled in for 2nd week of Nov (6weeks). I have not yet spoke to Chen about the recent tests that i had done. I do know that chen is leaving the country for 2 weeks at the end of oct. so i guess i have 2 weeks to get this done in or wait 6.

Mainframe... I agree with AL and the others. look for a new surgeon quickly. I saw 3 surgeons and liked Chen the best. he told me that he performs 350 surgeries a year, a large majority of those he said were on the aorta, then standard bypasses and about 20 valve-sparring repairs. the other 2 surgeons were very good too, but thought that mech was best for me. I am only 29 and did not want coumadin forever, I have read and researched it and know that it doesn't have to be a bad thing (coumadin), but my cardio advised me to see multiple surgeons and make sure that i felt like i did my due diligence. In that process thats how i got here. But i would seek another opinion if i were in your shoes mainframe.

Thanks for the help fellas, I'll let you know more once i have talked to chen

 

[Ross]

Red means run son, numbers add up to nothin. 5.0 is RED.

 

[scuba_898]

Well i spoke to Chen today about the test results.

He said that he believes he can still repair the valve. he does not think i need too move up my surgery date, and As he will be away for three weeks very soon, he said it is difficult to schedule someone in at this point. he thinks that i would be ok waiting that long even with aneurysm at 5.1 (5 weeks). I am having a tough time swallowing that.

I was kinda hoping that he could move it up. I just am more worried about the aneurysm now than i am the valve. he did think too that the aneurysm could not have grown that quickly and probably was just not documented in March. he said that what constitutes a fast growing aneurysm is 1cm in a year, and that they are rare. I know that he was trying to comfort me there, but my concern is still there.

So for now i am just going to try to not get worked up or do anything physical for the next 5 weeks or so until the 2nd week of November when my surgery will be (still no date yet but he said lets plan for then).

ALSO FYI for administrators i am on the calender for a Oct 22nd surgery date, I have since canceled that date so you can take me off the calender. thanks for your help.