HUGE Mistake- Big Turn of Events

[SpoDeb]

I wanted to let all my new friends know that my surgery on August 14 has been cancelled indefinitely (probably at least for a year of 2, hopefully more)

However, the reason I was being rushed into surgery in the first place turns out to be technician and cardiologist error, and surgeons not questioning test results so I want to let everyone know what happened to me so hopefully I can help some other folks out there

I have known I have a BAV for at least 17 years, and a valve problem for 25 years, and have seen someone who was recommended as the best cardio in SoCal, Bill Mandel of the Cardiovascular Medical Group, for annual echos/appointments for the last 7 or 8 years. My AV has fluctuated between 53 and 57 mm during my echos from 1999 to 2005. When Dr. Mandel got the prelim results of my echo 8 weeks ago, it stated 62mm. He immediately started "freaking out" on me, and saying if this was confirmed by his echo cardio, I may have to have surgery soon. The next week it was confirmed by Dr. Santandar Bahtia, who said I should start meeting with surgeons. I had and still have no symptoms. None.

I met with Dr. Laks at UCLA about 2 weeks later, and Dr. Trento at Cedars 2 weeks after that. They both recommended surgery by the end of 2006, and since I am getting married Nov. 11--I should have it first and get it over with. Mandel agreed, we agreed on Dr. Trento, and scheduled his first avail surgery, next Monday Aug. 14. Some of you have read my posts trying to decide between a tissue valve and a Ross.

2 weeks ago when my amazing fiance Marc and I started telling people, a friend from undergrad mentioned that a guy we went to Stanford with, Dan Levi, is now a pediatric cardiac surgeon at UCLA, I should talk to him. I said sure, and about 10 days ago he gave us an hour of his time. Dan said he works under Laks, he would pull my echo and reports and have them looked at by Dr. Childs and/or Dr. AboulHasn of UCLA's Adult Congenital Heart Clinic. 5 days ago (Thursday) I received an email from Dr. AbdulHasn saying that they didn't think my AV valve is 62mm, they re-measured the echo and got 55mm, no need for urgent surgery and I should get a stress echo.

I obviously called my cardio immediately and they "fit me in" (not happily, I literally had to almost yell at his personal assistant) for a stress echo yesterday (Monday) I told the cardiologist who was supervising, Dr. Howie Allen, what was going on and is there any way to get the results quickly. He worked up the results immediately, and got 55mm and no problem at 187 hpm!
He immediately brought up my echo from June and showed me where the other cardio HAD MEASURED MY LV AT AN ANGLE and said he got 57mm, called Mandel, reviwed both echos and Mandel agreed I could cancel my surgery and come back for another stress echo in 6 months.

obviously my life has been turned upside TWICE in the last 8 weeks. I got the best possible result, but only because by chance my echo got forwarded to 2 doctors I have never met who questioned the results.

I am urging anyone else who has known about their BAV or other valve problem and has an echo with a dramatic change but no symptons to PLEASE get it remeasured and/or get a 2nd echo from another cardio. Also, Dr. Mandel NEVER ordered a stress echo for me, which I now think is imperative.

I was 6 days away from OHS and not one of the cardios or surgeons I was seeing(all considered the best in LA) questioned my results.

Very luck in LA

Debbie

 

[Ross]

Debbie no one should rely on an echo for surgical intervention. They simply are not accurate enough. More definitive tests need to be done such as MUGA SCAN, Catscan, Catherteriztion and perhaps even a TEE. If this whole scenario is based only on an echo, I'd find out why I haven't been given any of these other tests!

 

[Nan]

Wow! What a situation! I am so glad for you that the information was reviewed by someone who questioned it. Most folks don't end up with that option!

Hope you continue for many years with no changes and feeling healthy and well.

Take care.

 

[tobagotwo]

I'm trying to piece together what is meant by some of the abbreviations. AV usually means Aortic valve. The size of the aortic valve aperture would not grow from 55mm to 62mm: it only gets smaller. If your aortic valve aperture were at 55mm, they would be pushing you for surgery.

I'm thinking that you mean your aorta, and that that is the enlarged size of it. If so, the concensus on the site has been that 5.5cm (55mm) is fully concerning enough for surgery.

Ross? Comments?

Best wishes,

 

[Karlynn]

I agree. I'm confused too. Although I'm not well versed in Aortic valve measurements, I've read enough here to not understand the numbers that are being given to you as a reason that a surgery date is possibly 2 years away.

 

[geebee]

Debbie,
I know you were looking for an answer that fit with your plans, namely no surgery short term. However, I am questioning why you would accept the answer of one surgeon when 2 cardios and 2 excellent surgeons said surgery was necessary.
I think you need additional testing to make sure you are not living with a time bomb. As Ross mentioned, there are many other tests besides an echo that are much more accurate and certainly indicated in a situation such as yours when there are so many diverging opinions.
I would really hate for you to end up with serious problems or even death because you didn't get the proper testing.
Please reconsider your stance and request more testing.

 

[Ross]

Well if we are talking aortic root diameter, the last bloody thing she needs is a stress test with a 5.5 aneurysm!

 

[Lynlw]

Debbie no one should rely on an echo for surgical intervention. They simply are not accurate enough. More definitive tests need to be done such as MUGA SCAN, Catscan, Catherteriztion and perhaps even a TEE. If this whole scenario is based only on an echo, I'd find out why I haven't been given any of these other tests!

I agree w/ everything Ross said, has anyone mentioned a cath?Lyn

 

[davidfortune]

Deb,

I'm assuming you are referring to Left Ventricle measurements since that was your discussion in your original posting.

There was also a post by Butterfly a couple of days ago discussing contradictory echo results. I have had a similar situation myself and absolutely recommend 2nd and if necessary 3rd opinions before surgery to everyone since this is really medical art not science.

Congrats that your surgery is delayed. If it were me - I would probably go for one additional echo and eval from a different doctor just to be sure. That's what I did before after I got one "No" and one "Yes" for surgery. I like the "Not time yet" answer as long as that is really the right answer. If it is wrong then waiting just does damage to my heart. I want the "Not Yet" but I want to be double sure that is right just as I want to be double sure the "Now it is time" is right when that time comes.

Good Luck
David

 

[Superbob]

Debbie,

You have been on an emotional roller coaster with this bad news/good news scenario playing out, and I sincerely hope the good news holds. However, I am glad some of the best-informed folks on this site have raised questions about the numbers, because I was definitely puzzling over them, too.
I know that echos revealed potential problems for me, but what confirmed my urgent need for surgery was a catherization that showed I had an enlarged aortic root of 5.3 cm (53 mm). That was at the level of being a ticking time bomb. When I had the surgery just two months later, the aortic root was measured at 5.5 cm (55 mm), so there had been further increase in just those two months. I am a large man so maybe my aortic numbers could be safely larger (somewhat) than some smaller folks, but 5.3 cm was definitely in the danger zone.

If your numbers are aortic dimensions, I join others in recommending that another look be taken at your condition by medical experts using the most precise testing possible. Your safety and long-term well being is concern of everyone here.

 

[ALCapshaw2]

Do you have COPIES of ALL of your Test Results?
If not, you should get copies ASAP and review them yourself.

It would help to clarify the Numbers, the Parameters (mm vs cm vs sq. cm vs sq mm etc.)

It would also help to clarify exactly WHAT those numbers are a measurement of, i.e. chamber size, valve opening, aorta diameter ???

'AL Capshaw'

 

[LLJ]

Wow! You got answers from some of our best informed people on VR.com. I agree it's good to have the additional tests. After my bum 6 month echo, I had a stress,done not with exercise but with a drug to mimic an exercise state because of the fear of anneurysm and the possible condition of my valve. When it came back positive, I had a cath done as well,then surgery.
I NEVER HAD SYMPTOMS. I ran 3 miles the day before my surgery. My most significant symptom was I was getting slower in my runs.
Good Luck
I'm pulling for the wait 2 years answer. Planning a wedding is enough!
LLJ

 

[jwilliamsr]

Debbie,

WOW! I'm so glad you had access to the additional opinion that may well have prevented a premature surgery. THANKS for sharing your story. It will certainly help others who are following their valve status and expecting surgery someday.

However, I concur with the folks above that something is not quite right about the numbers or perhaps the terminology. I certainly hope the number you mentioned (55mm) is a left ventricle diastolic measurement or something else besides the aorta or aortic root. (Bless your heart, I promise we are not trying to add to your stress. I suspect that when you get a clarification of the terminology, all this will make sense to us.)

I'll share my personal history, in case it helps. It is similar to yours in some ways. I have known about my aortic valve problem for 11 years. It has been called "severe regurgitaion" for the last 2-3 years. The docs finally started using the words "bicuspid aortic valve" after my echo in April. During that April echo it was determined (or at least estimated) that my ascending aorta had enlarged to 48mm from 42mm 6 months earlier. That prompted a trip to the cardiologist who ordered a CT with contrast which confirmed the echo. The measurement of the aorta was 48.5mm. Subsequently that same CT was reviewed by another physician who called it 52mm (big difference, but either reading reflected a significant growth in 6 months). Then a cath was done and it also confirmed the aortic aneurysm. With my severe aortic valve problem PLUS a growing aortic aneurysm, my cardiologist, my surgeon and I all agreed that surgery was appropriate. On June 13, 2006 I got my mechanical aortic valve and a synthetic ascending aorta.

Now that I have heard your story, I wonder if I should have gotten one more opinion and/or one more test to make sure. (I also had no symptoms. In fact 2 months earlier I had run my best marathon time ever. ) I'm happy with the outcome, so your story won't cause me to have any regrets.... but it does make me wonder.

If you get a clarification on what the 55 refers to, please post so we can all stop worrying about your heart and start worrying about all those wedding preparations you need to make!

Best Wishes!
jimmy

 

[SpoDeb]

more info

more info

sorry everyone for the confusion...I was trying to get this up before I left work for the day

My left ventricle is 55 mm (not my aortic root) I have seen all my echo reports since 1999 and this is completely consistent...it has varied from 53 mm to 57 mm over the past 7 years during my echos and Dr. Allen said that is consistent... LV aren't the same size all the time. He also remeasured my echo from June and concluded that my LV measured 56mm...NOT 62 as the technician and cardiologist originally told me 8 weeks ago He also concluded that my LF performed "beautifully" under exercise stress.

He is now the 3rd cardiologist to re-measure my June echo and conclude that my LV was 56mm, not 62 mm...both the cardiologists at the UCLA Adult Cogential Heart clinic concluded the same thing (without my knowing so) so I am feeling pretty good that I am not in dire need of surgery. He showed me the line that the original technician had "drawn" on my LV to measure it was diagonol, not vertical

However, I appreciate everyone's concern and I am REALLY glad to know about the other diagnostic tests since Echos are the only tests my cardio has ever given me. I will be looking for a new cardiologist after I give this one a piece of my mind at my appointment next Monday

Regards

Debbie

 

[Lynlw]

Jimmy

Jimmy

That prompted a trip to the cardiologist who ordered a CT with contrast which confirmed the echo. The measurement of the aorta was 48.5mm. Subsequently that same CT was reviewed by another physician who called it 52mm (big difference, but either reading reflected a significant growth in 6 months). Then a cath was done and it also confirmed the aortic aneurysm. With my severe aortic valve problem PLUS a growing aortic aneurysm, my cardiologist, my surgeon and I all agreed that surgery was appropriate. On June 13, 2006 I got my mechanical aortic valve and a synthetic ascending aorta.


Jimmy since you had a cath that determined you needed the surgery I wouldn't even waste a min wondering about if you should have had any other tests. that is the best you can do to get a really good information, Lyn

 

[gijanet]

Great news, Debbie!

Great news, Debbie!

THanks for sharing your story. I, too, though would insist on a more definitive test at some point in the future.............once you find a new card! And here's to two more years or longer in the waiting room..........if planning that wedding doesn't do ya in! Congrats!

Jimmy, I second Lyn. With a cath confirmation, I wouldn't give it a second thought.

Hugs. J.

 

[Superbob]

Debbie,

Glad to hear that those numbers weren't the aortic root dimension. As you can see, we fret about our friends here! Certainly didn't mean to add to your stress. It does sound like it would be a wise move to get a new card who will be attentive to any changes.

All best wishes,

 

[SpoDeb]

Thanks

Thanks

Thanks everyone for your concern and suggestions!

I double checked my aortic root measurements and it is 29mm (down from 30mm in 2005) so I'm pretty confident this whole thing was a scare..but also a really valuable experience, as Marc and I are now SO much more knowlegeagble about symptoms, danger signs, the actual surgeries, our choices, surgeons and this community! You have all been so helpful the past 8 weeks...it's been great to read posts in all the different areas, research and even talk to some of you!

I will keep active in the site, because who knows. next year could be the year, and I want to be pro-active.

I'm also looking for a new Cardio in Los Angeles (I live in Santa Monica but can be anywhere in greater LA) so if anyone has a cardio they really like please feel free to forward his or her name and contact info.

Thanks again

Debbie

 

[Karlynn]

Thanks for straightening us out on the numbers. As you can see, we worry!

Please do stick around. We have a few members who are active and have been in the Waiting Room for quite a while.

 

[temp69]

Dr. Michelle Hamilton at UCLA. I saw her and she recommended surgery, but not at first. At first she said let's just watch it. But said I should have a CT scan, which showed an aneurysm at 5.1. That, coupled with the BAV calcification convinced me I should go ahead.

Best of luck, and keep eating healthy and watch your weight, etc. You'll be fine.