Abdominal aortic aneurysm: How did you do with AAA surgery?

Thank you for your wonderful response! I appreciate the connections with other members--I just have to remember to check my emails more frequently.
As far as noticing any symptoms before the tear was determined--I had just turned 60 in Oct. 2018 and my husband had his colonoscopy without incident. I had argued with my primary for 3 years about not wanting to go for a colonoscopy. My body started acting it's age in early November--I would get a quick sharp pain in my lower left abdomen that would last about 30 seconds--then I would notice a "gurgling" in my belly. At first, I thought it was gas.bloating.constipation or some other stomach issue. After our Thanksgiving dinner, I had a few days of discomfort that would wake me up during the night. I had scheduled a flu shot with my primary on Nov 26th and told him I would finally do the colonoscopy. He questioned why the sudden change of heart and I explained about the quick sharp pain. He said this symptom did not sound like a colon problem--and did an immediate ultrasound in the office. He noticed and recognized the tear immediately. He sent me downstairs to the ER (his office is located in the same building as Silver Cross Hospital Immediate Care) for a CT scan. I got the news that this was serious and would need surgery. The ER medivac'd me to Christ Advocate (a Trauma 1 hospital) where I was immediately placed in the STIC-U. I met with the surgical team and was advised that I would need an open repair because of the location of the tear in the root of the aorta (below my belly button and close to the renal arteries). After a week in the hospital, I was sent home to wait for my surgical call. I was not on any blood pressure medication, had not had any previous cardiac events or any pulmonary problems. Basically--I was in what I thought good health. This has been determined to be genetic--my father passed from throwing a blood clot following hip replacement surgery. It turns out that he had the same type of aneurysm. We were not advised of the secondary cause of death until we read the death certificate so no genetic testing was advised for my sister or myself. I will be contacting John Ritter Foundation or Mayo for advice on how my sons can get genetic testing.
This has been a shock--not only to my immediate family and my sister--but to me. I don;t have anyone in my immediate circle of friends with this condition so I decided to do my own research on the internet. i was unaware of the meaning of an aneurysm and was glad to read about John Ritter's case. Thank goodness for websites like this! I am in a better frame of mind knowing I can ask questions without feeling foolish or bothering the surgeon. I have received cardiac clearance to return to work after being on 3 months of disability. I'm concerned with the lack of cardiac rehab (my scans did not qualify me for rehab and AAA does not fall within the parameters of cardiac surgery). I need to take control of this myself and be an informed patient. I'll follow up with your suggestions--and thank you again for your kind words!

Hello @modafi,

Welcome to Connect. You’ve been through quite a major procedure, and I can imagine the fatigue you’re experiencing! Open abdominal surgery is the more invasive form of surgery and has a longer recovery time. Here’s some information from Mayo Clinic https://www.mayoclinic.org/diseases-conditions/abdominal-aortic-aneurysm/care-at-mayo-clinic/mac-20350696

Connect member @poppy123 might be able to share some thoughts as she recently posted about her father, who had a 10-cm abdominal aortic aneurysm repair done in 2017...https://connect.mayoclinic.org/discussion/physician-consult-for-patient-in-hospital/
How is your dad doing, @poppy123?

Given that the celiac artery is the first major branch of the abdominal aorta, I’d encourage you to view this discussion, https://connect.mayoclinic.org/discussion/celiac-artery-aneurysm/
I’m hoping @mfolan @therannmann @onemind711 @kespectrum @degarden_girl @kdh1 @txkathy will join us here with some insights that might help you.

I’m also tagging @annak1691 @mimieleven @jessicalatessa @themadyank @lynnkay1956 and @HeartPatches who’ve talked about AAA in this discussion: https://connect.mayoclinic.org/discussion/abdominal-aortic-aneurysm/

@modafi, did you notice any symptoms before the tear was determined? How did the doctors diagnose this?

My dad had an 10 cm abdominal aortic aneurysm repair done in Dec 2017 in Arkansas. In Dec 2018 we found out he had a bloodstream infection with MRSA. (Likely related to hospitalization for surgery in Dec 2017). He was also diagnosed with a spinal epidural abscess that Drs don’t recommend draining due to its small size. After 24 days in the hospital being treated with IV antibiotics he was released with negative blood cultures. 2 weeks later he is back in the hospital with positive MRSA blood cultures. It appears the MRSA may be I n the abdominal aortic repair and the spine. The Drs here don’t see these types of cases often (1 every 2-3 years) and we’re hoping they could consult a Mayo specialist. My dad is currently in the hospital fighting for his life so travel is questionable right now. We desperately would like for our Drs here (cardiology and infectious disease) to consult with specialists there on options/recommendations. If the specialist believe surgery is a viable option after reviewing scans, labs, his case, then we’d get my dad there for surgery. However, due to his current hospitalization, just going for an in person consult to find out they might not even consider surgery would put a tremendous strain on him. Can anyone weigh in? His Drs here don’t seem to know how to reach out or motivated to try. We’re desperate and time is of the essence.

Hello @poppy123 I am Scott (aka IndianaScott) as noted by @kanaazpereira I am so very sorry to read of your dad's health challenges.

While my wife fought her battle with brain cancer she was seen most often by her local GP here in Indiana, but we also remained patients of her neuro-oncologist at the Rochester Mayo Clinic location. Later in her disease progression travel became impossible for her, but we utilized some of the Mayo long distance, tele and video medicine consulting options for her. I am sure its uses change by disease, physician, etc,, but we found it wonderful for her. Again, only her case for example, we were able to have her MRI done here, send the digital information for reading at Mayo and then video consult with her neuro-oncologist for his findings, opinions, options, care, etc. I am not sure if the technology is still the same or available, but we used their 'Mayo Virtual Visit' system once we had the need for distance help.

I will also note that initially my wife's GP was not, shall we say a 'fan' of our use of the Mayo doctor, but after my begging she agreed to try and then changed her thinking as it became obvious, in a very collegial manner, that the specialists at Mayo were adding great value to her patient's life and condition.

I wish you well and please feel free to ask any questions you might have

@poppy123, I also want to offer another option through which providers/doctors may be able to consult with Mayo Clinic – Mayo Clinic Care Network (MCCN).
MCCN uses technology and physician collaboration to deliver a full spectrum of medical expertise to communities across the country and throughout the world. Through the network, Mayo Clinic collaborates with local providers, complementing local expertise, and ensures that people have access to Mayo Clinic medical expertise no matter where they live.
To find a MCCN center close to you, and for more information:
https://www.mayoclinic.org/about-mayo-clinic/care-network/about
I’m tagging @concernedmtnmom @tomewilson @IndianaScott as they’ve talked about phone consults in the following discussion:
– Telephone consult https://connect.mayoclinic.org/discussion/telephone-consult/

Welcome to Connect, @poppy123,

1. The most effective step would be for your father’s doctor(s) to call Mayo Clinic (contact info. below) and request to speak with the cardiology consultant on call.

2. Your doctor can also call Mayo Clinic's (Rochester, MN) Cardiology Triage number: (507)-255-2910

3. Each of Mayo Clinic's three campuses — Rochester, Minnesota; Jacksonville, Florida; and Phoenix/Scottsdale, Arizona — has a Referring Provider Office staffed with physician liaisons. The Referring Provider Office is a resource for all providers outside Mayo Clinic, whether you're getting in touch with Mayo for the first time or have an ongoing relationship with us and our providers. Physician liaisons work closely with Mayo's clinical areas to bring the most up-to-date, relevant information to referring providers and their staff members.https://www.mayoclinic.org/medical-professionals/provider-relations/resources-support

The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments

Hello @miracle1,

I was just noticing that you posted last year about your sister coming to Mayo for surgery. I hope that by now she has had the surgery and has returned to her home.

I'd enjoy hearing from you. Could you post an update?

@worry

I can understand your concern about the growth of your AAA in one year. One thing to consider is what test(s) were used to measure the AAA? For example, was an ultrasound used one year and a CT scan the second year? Different tests can produce different measurements.

We have some discussions on Connect that you might find helpful. Here is the link, https://connect.mayoclinic.org/discussion/aaa-surgery/ and
https://connect.mayoclinic.org/discussion/abdominal-aortic-aneurysm/
I would also like to invite some other members of Connect, who have discussed AAA to this conversation. Meet, @acara, @cheryl66 and @kdh1.

Here is some information from Mayo Clinic's website, https://www.mayoclinic.org/diseases-conditions/abdominal-aortic-aneurysm/symptoms-causes/syc-20350688

As you have a concern about the growth, I would encourage you to phone your doctor's office and ask about it and if there is a need to be concerned. Also, remember that it is always your right to get a second opinion. Have you considered getting a second opinion to put your mind at ease?

I think it grows, (dialates) because the wall of the aorta becomes stretched and compromised perhaps because of factors that are different for each person. An illness that affects the heart specifically, likeRheumatic fever(from severe “scarlet fever“), Marfans Syndrome( inherited disorder), or some kind of weakness in collagen.. these are the things that add to the blood getting in between the layers of the wall. The blood causes a bulge which can be measured. From what info I have gathered, at a certain “dilation” there is less blood flow to be distributed to the major organs. There can be coughing because there’s pressure on the esophagus. There can be shortness of breath. A person can get by with these early stages, and not seem to experience great difficulty unless they are a very good athlete. But it is a silent condition, therefore, a potential deadly one, and must be monitored as we become aware of it. It is good in that sometimes a happenstance shows the condition, like you are getting tested for other things such as lower abdomen scan or chest X-ray .

<p>Does anybody have an idea why an AAA would grow in 1yr from 3.9cm to 4.5cm?</p>