Mayo Clinic Connect
Would like to know how patients did with AAA surgery
Hello everyone. I have an annual ultrasound and so far so good. I have used a manual wheelchair since 1984 following the surgery. I did not lose sensation. I get terribly swollen feet. The swelling used to really go down overnight now just a little. However as soon as I put my feet down we are back to square one. Probably due to sitting and poor circulation. I put my shoes on before I put my feet down! I am not in any pain except a little from rheumatoid arthritis in my hands. I count myself very lucky and I enjoy life.
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I was wondering how you're doing? I really like that last sentence in your post, above:"I count myself very lucky and I enjoy life."
I also wanted to mention this journal article I found online: https://www.sciencedirect.com/science/article/pii/S1533316714000065
Paraplegia after abdominal aortic surgery is quite rare, and could be caused by the imbalance of oxygen demand and oxygen delivery or "critical interruption of the spinal cord blood supply" during the procedure. Have you talked to your doctor about the swelling in your feet?
There were two approaches to repairing the aneurysms unfortunately I was quite sick so there was only one option and that had only a 3% success rate. So lucky to be here! I started an organization SCITCS 31 years ago. See AlbertaSCITCS Facebook and scitcs.org.
Swollen feet due to PAD and of course sitting for 34 years, hot weather contributes as well. Unfortunately people comment which can be embarrassing. “Better to be looked over than overlooked” I think! Thank you for remembering and enquiring. Very kind of you.
Liked by Kanaaz Pereira, Connect Moderator
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.
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
Liked by Scott, Volunteer Mentor
@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:
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/
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
I had open surgery Dec.18 2018 to repair a 5.7 cm tear in the root of the aorta. I am now worried about not having been in any type of rehab/exercise program following the surgery. I do get "winded" after going up and down stairs and need to sit down to catch my breath. I am still taking pain medication — only 1 every 12 hours now– but am tired most of the time. Is there a regime of exercises I can do to get back to feeling myself again? I would appreciate any feedback about recovery time and protocols following surgery.
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?
Liked by lynetteirizarry
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 @miracle1 and welcome to Mayo Connect
When you post "AAA sugery" I'm assuming that you are referring to surgery for an abdominal aortic aneurysm, is that correct? Have you been told that you need this type of surgery? If you are comfortable sharing a bit more about yourself, what size is the aneurysm; how long have you known about it; is your doctor planning on doing the open surgery or the type of surgery where a catheter is used?
While we wait for other Members of Connect to respond to your inquiry, I thought you might find this Mayo Clinic video helpful in understanding more about this procedure, Here is the link:
Liked by JK, Alumna Mentor, lioness, Ginger, Volunteer Mentor, lynetteirizarry
My sister is having surgery at Mayo for AAA surgery. As a caregiver I wanted to know what I need to plan?
Liked by Teresa, Volunteer Mentor
Now, I understand what you are wanting, @miracle1.
I'd like to direct you to a discussion group about AAA on Connect. Here you will see others who have dealt with this health issue. Here is the link to that discussion, https://connect.mayoclinic.org/discussion/aortic-aneurysms-introduce-yourself-meet-others/?commentsorderby=DESC#chv4-comment-stream-header.
In that discussion group is @kimspr3 whose mother (in her 70's) had the surgery. I'm inviting @kimspr3 to this discussion so that she can give you more information as a caregiver to someone who had the surgery.
@miracle1 Do you know which type of surgery your sister is having?
Liked by lioness, Ginger, Volunteer Mentor
I have a friend in town who had a 7cm one who is in her seventies. She was operated on here. She is doing ok . It saved her life but she has afib as a result. She was very athletic and previously a PE teacher.
@anniejam I don't think how physically fit we are determines who gets an aneurysm. I think genetics play a huge role. It is simply a weakness in the artery wall. It can be triggered by consistently high blood pressure or by smoking or by obesity but not everyone who has high blood pressure or who has smoked or has been obese develops this condition.
We also need to remember that as a population, we are living much longer and medical science can find these abnormalities much more easily than in the past. Before CTs and MRIs, I think the only way to find the aneurysm was by autopsy. We are fortunate to be aware of our diagnosis while we are still kicking and have it monitored and repaired as necessary.
Afib can strike just about anyone, with or without an aneurysm repair. There are medications to treat that and also ablations of the heart muscle that is causing the afib. I wish your friend well.
We live in Louisville, Ky. My sister had two repaired one month ago. She will be going back for the other three to be repaired with stent as soon as it arrives from Australia and surgery by Dr. Oderich. Being from out of town I was looking to see if all goes perf3ct approximately how long of stay in hospital and then rehab ?
I did call concierge and they gave me the name of hotels directly across from St. Mary’s.
I have forwarded this link to my sister and hope she will find it beneficial and gives her a little peace of mind,
Thank you so much.
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