Aortic Aneurysm

[JeanneImp]

Hi,
I know I haven't posted in a while, but life has been a bit crazy here...

I need to know how your drs deal with aortic aneuryms. Matt is feeling very uncomfortable about his. If you rem ember, they found his last June. A year later, there still hasn't been a followup.

Thanks!

 

[Mike C]

It Depends on many factors, most specifically size and location but he should be followed, inlcuding echo and preferably ct/mri every 6mos to a year most likely.

Many docs will prescribe a beta blocker and limit wieght lifting, important to keep blood pressure down.

The only fix is to replace when the risk of it dissecting/rupturing exceeds risk of operation.

You may want to look into the blood pressure drug losartran. its apporved for lowering blood pressure, but has been show to significanlty delay aneursym growht in mioce w/ marfans syndrome.

 

[RobThatsMe]

Hi,

I would suggest that you discuss your concerns with the doctor, and agree to a plan of monitoring. Perhaps yearly, and if change is noticed, than maybe every 6 months.

I know that this can weigh heavy on the mind, and that peace of mind itself promotes good health. A yearly test will allow you to know if you are stable or if there has been change. It will also keep your doctor informed as to what the next line of defense will be.

Do not fool around with putting monitoring off. Aneurysms and Dissections are known as the Silent Killers.. as so many times they occur without warning, and many do not make it to the hospital.

I am not trying to scare you, as I do not know Matt's condition. I have a dissection, and it is monitored yearly. Also a result of my dissection, I also have several small areas of small aneurysm development, all of which are stable. I have to admit, that each year I personally become very uneasy and concerned as the time for my CT's comes. I also so far, have felt a great relief knowing that the results were good, and that no change was detected.

Wishing Matt good health,

Rob

 

[Arlyss]

I do not have the details about your son's aneurysm, but as others have mentioned, it is not acceptable to have a diagnosed aneurysm and not have complete clarity about all aspects of care and a plan for follow up.

Even if a follow up plan is put in place, it should be changed without hesitation whenever there are any symptoms in the chest, questions, or uncertainties. No one has the ability to control/cure aortic disease - only to minimize risk with blood pressure contol and careful monitoring. You need a program that will allow you to pick up the phone and speak with professionals who understand aortic disease and know your son, whenever you have questions and concerns.

There are a few centers in this country which now specifically focus on the aorta in the chest. Here is one of them in the north east that you might explore.

http://www.massgeneral.org/tac/

You need a partnership with physicians who understand the challenges of aortic disease in the chest. I am wondering if others in your family might have this type of left heart and aortic condition also - there can be considerable variation in familymembers - have others been screened?

Best wishes,
Arlyss

 

[Granbonny]

Someone (doctor?)needs to be checking on his aneurysm..Not a year later.. what was his last size of his aneurysm?.....Mine was a 5..the time to operate..when they found mine..Surgery 3 days later.....NOT to scare you.but my wonderful B/I/Law age 50..thought he was having heartburn..Dissected..and died 24 hours after...they finally dx it ...did open-heart but never recovered. he had NO symptoms).cooked dinner for family that night.......So sad..Bonnie

 

[jkn2kids]

I would go see another cardiologist if your present one does not monitor the aneurysm.He needs to know the size of the aneurysm.He can call his cardiologist and request the results of the previous scan.I waited 3 long,agonizing years before I went ahead and had mine repaired along with a new mechanical valve.At times it was mental torture to walk around with this bomb in my chest.5 cm is the usual size for surgery but, as Ross can attest to,aneurysms near 5 cm can rupture.I would find out the size of the aneurysm and then go see a surgeon if it is close or over 5 cm.

 

[Ross]

Hi,

I would suggest that you discuss your concerns with the doctor, and agree to a plan of monitoring. Perhaps yearly, and if change is noticed, than maybe every 6 months.

I know that this can weigh heavy on the mind, and that peace of mind itself promotes good health. A yearly test will allow you to know if you are stable or if there has been change. It will also keep your doctor informed as to what the next line of defense will be.

Do not fool around with putting monitoring off. Aneurysms and Dissections are known as the Silent Killers.. as so many times they occur without warning, and many do not make it to the hospital.

I am not trying to scare you, as I do not know Matt's condition. I have a dissection, and it is monitored yearly. Also a result of my dissection, I also have several small areas of small aneurysm development, all of which are stable. I have to admit, that each year I personally become very uneasy and concerned as the time for my CT's comes. I also so far, have felt a great relief knowing that the results were good, and that no change was detected.

Wishing Matt good health,

Rob

I will second everything Rob has said. He and I are two very very lucky? people that have survived ruptures. It's imperative that they at least check it once a year if not every 6 months.

 

[briansmom]

Read below and you can see why I am so paranoid. If you know that there is an aneurysm, I would not go more than a year without monitoring. My son has had 3 surgeries and will probably have to have a heart transplant some time in the not too distant future. 2 of his surgeries and all of his heart damage could have been avoided if his dissection had been diagnosed in time.

 

[901]

My aneurysm was diagnosed by accident while looking for other problems. The Card had me checked every six months with no change for almost 4 years. Then while on the way home from a check-up. The Card called me and told me it was time to visit with the surgeon because the size changed from 5 cm to 6 cm over six months. The aneurysm actually drove the surgery and the valves were replaced because they leaked and they were going "in" anyway.

 

[JeanneImp]

Thanks

Thanks

After researching as much as I could and then coming here for advice, Matt has no other choice but to call his doc ASAP. He also has an outpouch above the Aortic valve. I am going to e-mail two of the other docs that this info was sent to.



Thanks again!

 

[gijanet]

Jeanne........

Jeanne........

I am tuning in late as usual, but I'm very concerned, too! Been wondering how you guys were doing..........I know y'all have so much going on...........

Have you gotten any feedback yet from the other two doctors? Please keep us posted and we are bumping y'all back to the top of the prayer list. Hugs. J>