BAV and Aneurysm--What are your restrictions?

[Thom]

I just found out Tuesday April 26 that I have an ascending aortic aneurism measuring 6cm. I had a bicuspid aortic valve replaced with a St Jude's valve in October 1997. My cardiologist found the aneurism using s CT scan without contrast. I am to go to a Memorial Medical Center in Savannah June 5 to have a angio CT with a 64 slice scanner to confirm the size. Assuming that the size is confirmed I will meet with the cardiologist again on May 11 and proceed to schedule surgery. I certainly hope your recovery has progressed well since your history seems so much like mine. I am 66 years old. Please let me know if you have any advice.

I'm sure you know there's a little more risk involved with re-do's, but there's far more risk if this condition is not fixed. Perhaps I read it here, "I guess the good news is you know what to expect, and the bad news is you know what to expect".

I don't know the specialties at the hospital in Savannah, but, as far as advise, I think it's a good idea to learn if the surgeons there do a lot of re-do's and ascending aorta grafting. Those surgeons who do a lot of Marfan work are probably most adept. Because of the choices I had in the area where I live, my PCP advised me to go to some hospital where they did a lot of cases similar to "ours". I could have gone to Cleveland, Mayo, Mass General, and others, but chose Johns Hopkins. I found the care there excellent, and the service very personalized.

Good Luck!

 

[PJmomrunner]

Ah, yes...how long? That IS the key question. Unfortunately that is the great unknown! I'm told the answer to #2 is "yes". #1 is greatly variable--2 years? 10 years? More? Only time will tell.

Hi.
Due to a bicuspid aortic valve and an aneurism (much like you), I had an aortic root replacement job about 2 weeks ago. I am being told (cross my fingers!!) that following my rehab. I will be able to run and exercise however I choose with the exception of any blood sports. I have a mechanical AV so I'm on Coumadin. I found that just knowing I had a problem and would have to have surgery took away all desire to exercise because I was constantly afraid of something bad happening. I'm not a physician, but I think that whenever simple exercise like running may interfere with something that can be fixed, it's time to fix the problem. I would be tempted to find out 1) how far away you are from having to have the surgery; and 2) if your condition will just degrade over time making the surgery inevitable. If the answers are yes, I'd get it over with ASAP. I'm 32 and with the exception of the surgery and the 6 days afterwards, I'm reallly feeling great and so glad to be on the road to recovery. I had my 2 week check up with the cardiologist today and he said I'm doing great. That being said, I also know that there is a lot of variation here and many other experiences to read. Others may feel differently. As the title says, my 2 cents. No more, no less, right?

 

[Thom]

I'm not sure I like what I'm learning though!
replace?

Thom, Did your aorta go from normal to 6.8cm in one year??? My beta-blocked-blood runs cold reading that!

Oh...I don't know...

It was about a year and a half since my last checkup. I had been holding at 5 for about 6 years, and assumed nothing was changing. My scheduled physical was during the Florida Hurricanes, but a change never entered my mind. It wasn't a pleasant surprise.

 

[PJmomrunner]

Whew! You dodged that bullet!

It was about a year and a half since my last checkup. I had been holding at 5 for about 6 years, and assumed nothing was changing. My scheduled physical was during the Florida Hurricanes, but a change never entered my mind. It wasn't a pleasant surprise.

 

[Thom]

I just wanted to welcome thom...and rtblount (who lives in our Georgia town that raises the world famous Vidalia Onion, Yummy) and they should be about ready to harvest.. ..thom, hope your recovery continues to go well and rtblount..I am your age, too, and live in Northeast Ga...Mountains...I had my surgery at St. Joseph's in Atlanta...but, Savannah is so close to you..You should be in a good place for family to visit..Let us know your surgery date. Bonnie

Thanks, Bonnie, for your welcome. The recovery isn't going as fast as I hoped, but my expectations may be unrealistic. I'm 12 years older than the last time.

regards,

Thom

 

[Sophie]

About aneurysms

About aneurysms

Have you been to this site?
http://www.westga.edu/~wmaples/aneurysm.html
It has been mentioned on VR.com before. I found it before I found VR.com and some of the stories are mind-blowing! Some people aren't in crisis with their aneurysm until the things are as big, (relatively speaking) as a battle ship!

It doesn't offer any answers but there are names of Doctors who will answer your questions.

Hope it helps!

Sophie

 

[csutherland]

Yes, Sophie, isn't that site an eye-opener? My husband found out in January that he has a 5.2 or 5.3 ascending aortic aneurysm. Out of the blue! He has a St Jude's aortic valve, which also came out of the blue. He's not a Marfan's patient, nor did he have a bicuspid valve.

We went for a 2nd opinion to St Louis because the surgeon here in Springfield gave what we thought were pretty grim statistics--15-20% mortality rate for surgery on a re-do. He wanted to wait till the aneurysm got to about 6 cm. The St Louis specialist agreed, except he didn't put his mortality rate quite so high. Anyway we're just waiting till Sept to get another CT scan. He was told by both surgeons to not do heavy lifting and keep the BP at 110/70 (which is hard).

A trip to the ER last week for ankle edema was the latest in his saga. His feet, ankles and clear up to his knees were badly swollen. They doubled his lasix. It's a little better. All their tests came out perfect. They called it "dependent edema". It just seems to me that something had to cause it.

 

[PJmomrunner]

I too found that website pre-VR, in fact I found Arlyss' husband's story on the website before I actually found that website. The stories ARE mindblowing--maybe too much so for me.

Most of the stories are about descending aortic aneurysms and none of the doctors listed are cardiothoracic surgeons only reachable via snail mail....

You are very kind to pass on the info. This site is populated by such a great group of people.

Thanks,

P. J.

Have you been to this site?
http://www.westga.edu/~wmaples/aneurysm.html
It has been mentioned on VR.com before. I found it before I found VR.com and some of the stories are mind-blowing! Some people aren't in crisis with their aneurysm until the things are as big, (relatively speaking) as a battle ship!

It doesn't offer any answers but there are names of Doctors who will answer your questions.

Hope it helps!

Sophie

 

[rtblount]

Rtb

Rtb

Thom thanks for the reply. I plan to meet with the surgeon recommended by my cardiologist ASAP and ask the questions about procedures and outcomes. Thanks

I'm sure you know there's a little more risk involved with re-do's, but there's far more risk if this condition is not fixed. Perhaps I read it here, "I guess the good news is you know what to expect, and the bad news is you know what to expect".

I don't know the specialties at the hospital in Savannah, but, as far as advise, I think it's a good idea to learn if the surgeons there do a lot of re-do's and ascending aorta grafting. Those surgeons who do a lot of Marfan work are probably most adept. Because of the choices I had in the area where I live, my PCP advised me to go to some hospital where they did a lot of cases similar to "ours". I could have gone to Cleveland, Mayo, Mass General, and others, but chose Johns Hopkins. I found the care there excellent, and the service very personalized.

Good Luck!

 

[rtblount]

rtblount

rtblount

Thank tou for the welcome. I am in the process of trying to get the followup and meeting with the surgeon suggested by my cardiologist ASAP. I'll post the surgery date soon as I know. It is comforting to be able to discuss these things with those who have been there.

I just wanted to welcome thom...and rtblount (who lives in our Georgia town that raises the world famous Vidalia Onion, Yummy) and they should be about ready to harvest.. ..thom, hope your recovery continues to go well and rtblount..I am your age, too, and live in Northeast Ga...Mountains...I had my surgery at St. Joseph's in Atlanta...but, Savannah is so close to you..You should be in a good place for family to visit..Let us know your surgery date. Bonnie

 

[rtblount]

Rtblount

Rtblount

I got really great news yesterday from my cardiologist. After a CAT scan done last Thursday with contrast the actual size of the aneurism is 5.25 cm and not 6.0 as indicated in the first scan without contrast. He doesn't believe surgery is necessary now but will monitor the size regularly. He said that my aorta was somewhat dialated 8 years ago before the aortic valve replacement and he doesn't believe it has grown much if any. I am much relieved and thankful.

I just wanted to welcome thom...and rtblount (who lives in our Georgia town that raises the world famous Vidalia Onion, Yummy) and they should be about ready to harvest.. ..thom, hope your recovery continues to go well and rtblount..I am your age, too, and live in Northeast Ga...Mountains...I had my surgery at St. Joseph's in Atlanta...but, Savannah is so close to you..You should be in a good place for family to visit..Let us know your surgery date. Bonnie