A 4 year old topic, but for others who read this, here's my personal experience.
When in doubt, go to your doctor and take a CT Scan. This with contrast will clearly show any abdominal aorta aneurysm, called AAA.
IF less than 5 centimeter, instant life changes required: no smoking, no acid soft drinks, healthy food and exercise.
If when larger than 5 centimeter, ct-scan more often, and patient and doctor must talk how much longer before surgery is needed, and life saving.
I had 2 evar surgery, a minimal aaa surgery if location of the aaa is near the groin area. Both my surgery had complications, less flood of blood to feet, and 1 foot become numb. Also Staph infection in surgery area. Recovery after this surgery is much faster than a traditional open aaa surgery, but only a option in limited cases.
Open AAA surgery, hospitalization 14 days, recovery will be long (months) took 4 months before I was pain free. Scars are horrible after surgery, but 4-6 months later my chest stomach scar had faded well.
Scar on upper thigh took longer to heal.
Don't be afraid, don't wait!
Go to your hospital once you feel something is wrong internally. CT-Scan will tell if anything is going on.
In my case, my pulse was visible on my stomach when lay down on the bed.
Hi, I’m glad you’ve recuperated , my AAA is at 4.6 cm but my vascular surgeon wants to do EVAR , because it was 4.0 10 months ago , I’m a bit reluctant, because I’ve heard of people requiring open repair after EVAR complications was this your case also , you said you had two procedures thanks for any input
Luckybear,
Just read your post. I am currently recuperating from open abdominal dissection repair of my Superior Mesenteric Artery. I also have an aneurysm of my celiac artery that will need to be watched. My surgeon, from the Rochester campus, had a bunch of other tests/procedures done to eliminate other causes for my pain. These all came back negative, so the decision was made to proceed with the open abdominal repair. Thank God that we did. Surgery was roughly 10.5 hours, they found multiple adhesions that were restricting flow to the intestines and they had to address these prior to fixing the dissection. Once they got to the SMA, they discovered a false lumen that was causing significant issues as well. Then they were able to do the patch repair of the dissection. Recovery is going well so far. And with God's help that will continue. I can finally eat without fear of pain/discomfort. What I can tell you is that you need to be your best advocate. Listen to what your body is telling you. I am glad that I did (along with my wife's help).
Hi, I’m glad you’ve recuperated , my AAA is at 4.6 cm but my vascular surgeon wants to do EVAR , because it was 4.0 10 months ago , I’m a bit reluctant, because I’ve heard of people requiring open repair after EVAR complications was this your case also , you said you had two procedures thanks for any input
"I’ve heard of people requiring open repair after EVAR complications was this your case also"
Yes. First Evar led to numb foot and unable to walk.
Second Evar was done 1 month later. Staphylococcus bacteria that remained for many months, even 5 different antibiotics was prescribed by 2 different hospitals.
2 months later full open AAA surgery.
Staphylococcus bacteria remained even after this.
Until 4th surgery 5 months later, at another top end private hospital, one of the best in the country.
I can understand your doctor suggest Evar because less intrusive, fewer complications, much shorter recovery time, cheaper for insurance or you.
Whatever procedure the patient/doctor agree to, the risk of complications will always be there.
Before first surgery I researched to find best hospital and surgeon in my part of the country. Still, I endured many complications.
My complications become more severe after AAA surgery:
● Blood clot.
● Erectile dysfunction (temporary)
● Ejaculation impossible (reach orgasm without any ejaculation) until this day.
● Still partly numb foot, (that required a fifth surgery of a different kind).
The blood clot pain was insane, compared to any other pain one experienced before. I knew right away what it was, and ambulance was called. Emergency surgery saved my life.
Today I still suffer pain, sometimes so severe that I'm sure I will go to hospital same day, and numb foot some days.
Still prescribed strong opioids that I wish to avoid.
My hospital bag are always by the entrance door.
When in doubt, go to another hospital for second opinion.
In my case I still wish I had chosen AAA first time, and saved myself for the 2 previous surgeries. But before any surgery, I wanted smaller scars and shorter recovery time.
From surgery #4, I find it difficult to fully recover, also mentally.
3 previous surgeries, I worked hard to regain balance, learn to walk again, eat all I could to gain weight again.
Since surgery #4 I am mentally and physically totally drained, and find recovery impossible. Limit the number of surgeries needed, when possible.
Whatever surgery one choose, this will change your life, more than you can imagine.
I sincerely hope you will be luckier than me.
"I’ve heard of people requiring open repair after EVAR complications was this your case also"
Yes. First Evar led to numb foot and unable to walk.
Second Evar was done 1 month later. Staphylococcus bacteria that remained for many months, even 5 different antibiotics was prescribed by 2 different hospitals.
2 months later full open AAA surgery.
Staphylococcus bacteria remained even after this.
Until 4th surgery 5 months later, at another top end private hospital, one of the best in the country.
I can understand your doctor suggest Evar because less intrusive, fewer complications, much shorter recovery time, cheaper for insurance or you.
Whatever procedure the patient/doctor agree to, the risk of complications will always be there.
Before first surgery I researched to find best hospital and surgeon in my part of the country. Still, I endured many complications.
My complications become more severe after AAA surgery:
● Blood clot.
● Erectile dysfunction (temporary)
● Ejaculation impossible (reach orgasm without any ejaculation) until this day.
● Still partly numb foot, (that required a fifth surgery of a different kind).
The blood clot pain was insane, compared to any other pain one experienced before. I knew right away what it was, and ambulance was called. Emergency surgery saved my life.
Today I still suffer pain, sometimes so severe that I'm sure I will go to hospital same day, and numb foot some days.
Still prescribed strong opioids that I wish to avoid.
My hospital bag are always by the entrance door.
When in doubt, go to another hospital for second opinion.
In my case I still wish I had chosen AAA first time, and saved myself for the 2 previous surgeries. But before any surgery, I wanted smaller scars and shorter recovery time.
From surgery #4, I find it difficult to fully recover, also mentally.
3 previous surgeries, I worked hard to regain balance, learn to walk again, eat all I could to gain weight again.
Since surgery #4 I am mentally and physically totally drained, and find recovery impossible. Limit the number of surgeries needed, when possible.
Whatever surgery one choose, this will change your life, more than you can imagine.
I sincerely hope you will be luckier than me.
I’m sorry to hear of your complications and I’m sure at a loss for words, but you’re still here and that’s big , after all you’ve gone through! I sincerely hope all aspects improve for you , thanks very much for sharing the wisdom you have, I’m 64 and in fair medical shape but I’m definitely getting multiple eyes on this and was thinking the open surgery is still on the table as an option to consider but again thanks so much! as a former construction electrician I find it easy to forget I shouldn’t be lifting Heavy weight things , best wishes
Luckybear,
Just read your post. I am currently recuperating from open abdominal dissection repair of my Superior Mesenteric Artery. I also have an aneurysm of my celiac artery that will need to be watched. My surgeon, from the Rochester campus, had a bunch of other tests/procedures done to eliminate other causes for my pain. These all came back negative, so the decision was made to proceed with the open abdominal repair. Thank God that we did. Surgery was roughly 10.5 hours, they found multiple adhesions that were restricting flow to the intestines and they had to address these prior to fixing the dissection. Once they got to the SMA, they discovered a false lumen that was causing significant issues as well. Then they were able to do the patch repair of the dissection. Recovery is going well so far. And with God's help that will continue. I can finally eat without fear of pain/discomfort. What I can tell you is that you need to be your best advocate. Listen to what your body is telling you. I am glad that I did (along with my wife's help).
Thanks for your insight and information I wish you the best in recovering, the power of prayer is big ! Keep the faith , we gotta stick around to look after our family !
I'd like to invite @heather1976 to this conversation on abdominal aortic aneurysms. Welcome to Mayo Clinic Connect @heather1976. I've invited you to this conversation to meet @luckybear and @expat69 who recently posted in this discussion as well and may be able to share some of their journey with you.
@heather1976, you mentioned you are wondering on what you should be looking out for since you were recently diagnosed. Did you ever hear back about getting a scan from the vascular specialist? Have you tried reaching out again to confirm they don't want to proceed with that?
I'd like to invite @heather1976 to this conversation on abdominal aortic aneurysms. Welcome to Mayo Clinic Connect @heather1976. I've invited you to this conversation to meet @luckybear and @expat69 who recently posted in this discussion as well and may be able to share some of their journey with you.
@heather1976, you mentioned you are wondering on what you should be looking out for since you were recently diagnosed. Did you ever hear back about getting a scan from the vascular specialist? Have you tried reaching out again to confirm they don't want to proceed with that?
Thanks for joining me up here Justin. The specialist has said I will get another scan in May, I don’t have a date yet. I continue to see and feel a heart beat just below my belly button, with a dull pain that comes and goes throughout the day. The pain is nothing I would worry about if I hadn’t had this diagnosis. I feel I should trust the specialist would have got me in sooner for a scan if they thought it necessary, but also I worry things and people easily get overlooked and symptoms get brushed aside. I live in the U.K. and the NHS is severely strained, due to lack of funding from government, and my experience is you have to really push to get any care at all. With something as serious as saccular abdominal and iliac aneurysms and the catastrophic outcomes if they rupture, it seems I shouldn’t take any chances. So I guess I’m wondering what other people with aneurysms would do about the pulsating stomach and dull off and on pain I am experiencing. I constantly worry about it and am now trying not to exert myself at all. Always feeling like I should not travel anywhere that isn’t close to a hospital in case of an emergency. May seems a very long time away to be living like this. I’ve been told by a specialist I saw after my initial diagnosis that I would most likely need surgery at some point and it would need to be open surgery, not EVAR. The private specialist I paid to see gave me much more info then the NHS appointment specialist which was helpful but also worrying. The thought of all of this is terrifying.
"I’ve heard of people requiring open repair after EVAR complications was this your case also"
Yes. First Evar led to numb foot and unable to walk.
Second Evar was done 1 month later. Staphylococcus bacteria that remained for many months, even 5 different antibiotics was prescribed by 2 different hospitals.
2 months later full open AAA surgery.
Staphylococcus bacteria remained even after this.
Until 4th surgery 5 months later, at another top end private hospital, one of the best in the country.
I can understand your doctor suggest Evar because less intrusive, fewer complications, much shorter recovery time, cheaper for insurance or you.
Whatever procedure the patient/doctor agree to, the risk of complications will always be there.
Before first surgery I researched to find best hospital and surgeon in my part of the country. Still, I endured many complications.
My complications become more severe after AAA surgery:
● Blood clot.
● Erectile dysfunction (temporary)
● Ejaculation impossible (reach orgasm without any ejaculation) until this day.
● Still partly numb foot, (that required a fifth surgery of a different kind).
The blood clot pain was insane, compared to any other pain one experienced before. I knew right away what it was, and ambulance was called. Emergency surgery saved my life.
Today I still suffer pain, sometimes so severe that I'm sure I will go to hospital same day, and numb foot some days.
Still prescribed strong opioids that I wish to avoid.
My hospital bag are always by the entrance door.
When in doubt, go to another hospital for second opinion.
In my case I still wish I had chosen AAA first time, and saved myself for the 2 previous surgeries. But before any surgery, I wanted smaller scars and shorter recovery time.
From surgery #4, I find it difficult to fully recover, also mentally.
3 previous surgeries, I worked hard to regain balance, learn to walk again, eat all I could to gain weight again.
Since surgery #4 I am mentally and physically totally drained, and find recovery impossible. Limit the number of surgeries needed, when possible.
Whatever surgery one choose, this will change your life, more than you can imagine.
I sincerely hope you will be luckier than me.
I sympathize as it is scary to be told, but I'd rather know about the aneurysm than not know. I also have AAA measured at 4.1cm which was discovered in 2006 while having a CT scan for another matter. The good news is that for the past six years, the aneurysm has been stable at the 4.1cm size. The vascular folks at Mayo tell me that 5.5cm is the benchmark size where the benefits of surgery outweigh the risk of rupture. So, watchful waiting continues. After years of reading, I believe that many people have aneurysms that remain relatively stable for life. Blood pressure and cholesterol management are important as is the opinion of a major medical organization such as Mayo who deal with AAA on a regular basis.
Hi: My AAA has been holding at 3.9, and my doctor has me doing my ultrasound every year. It has not grown in 3 years as of now. I am due again to be checked in April. I hope I never have to get the surgery, but I find peace in knowing that they are constantly making great advances in more safe surgery for all kinds of issues. My cholesterol and BP have been pretty good, and I know my doctor seemed more interested in keeping the BP stable for me. Hope you continue to do well.
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Hi, I’m glad you’ve recuperated , my AAA is at 4.6 cm but my vascular surgeon wants to do EVAR , because it was 4.0 10 months ago , I’m a bit reluctant, because I’ve heard of people requiring open repair after EVAR complications was this your case also , you said you had two procedures thanks for any input
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1 ReactionLuckybear,
Just read your post. I am currently recuperating from open abdominal dissection repair of my Superior Mesenteric Artery. I also have an aneurysm of my celiac artery that will need to be watched. My surgeon, from the Rochester campus, had a bunch of other tests/procedures done to eliminate other causes for my pain. These all came back negative, so the decision was made to proceed with the open abdominal repair. Thank God that we did. Surgery was roughly 10.5 hours, they found multiple adhesions that were restricting flow to the intestines and they had to address these prior to fixing the dissection. Once they got to the SMA, they discovered a false lumen that was causing significant issues as well. Then they were able to do the patch repair of the dissection. Recovery is going well so far. And with God's help that will continue. I can finally eat without fear of pain/discomfort. What I can tell you is that you need to be your best advocate. Listen to what your body is telling you. I am glad that I did (along with my wife's help).
#faithoverfear
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2 Reactions"I’ve heard of people requiring open repair after EVAR complications was this your case also"
Yes. First Evar led to numb foot and unable to walk.
Second Evar was done 1 month later. Staphylococcus bacteria that remained for many months, even 5 different antibiotics was prescribed by 2 different hospitals.
2 months later full open AAA surgery.
Staphylococcus bacteria remained even after this.
Until 4th surgery 5 months later, at another top end private hospital, one of the best in the country.
I can understand your doctor suggest Evar because less intrusive, fewer complications, much shorter recovery time, cheaper for insurance or you.
Whatever procedure the patient/doctor agree to, the risk of complications will always be there.
Before first surgery I researched to find best hospital and surgeon in my part of the country. Still, I endured many complications.
My complications become more severe after AAA surgery:
● Blood clot.
● Erectile dysfunction (temporary)
● Ejaculation impossible (reach orgasm without any ejaculation) until this day.
● Still partly numb foot, (that required a fifth surgery of a different kind).
The blood clot pain was insane, compared to any other pain one experienced before. I knew right away what it was, and ambulance was called. Emergency surgery saved my life.
Today I still suffer pain, sometimes so severe that I'm sure I will go to hospital same day, and numb foot some days.
Still prescribed strong opioids that I wish to avoid.
My hospital bag are always by the entrance door.
When in doubt, go to another hospital for second opinion.
In my case I still wish I had chosen AAA first time, and saved myself for the 2 previous surgeries. But before any surgery, I wanted smaller scars and shorter recovery time.
From surgery #4, I find it difficult to fully recover, also mentally.
3 previous surgeries, I worked hard to regain balance, learn to walk again, eat all I could to gain weight again.
Since surgery #4 I am mentally and physically totally drained, and find recovery impossible. Limit the number of surgeries needed, when possible.
Whatever surgery one choose, this will change your life, more than you can imagine.
I sincerely hope you will be luckier than me.
-
Like -
Helpful -
Hug
1 ReactionI’m sorry to hear of your complications and I’m sure at a loss for words, but you’re still here and that’s big , after all you’ve gone through! I sincerely hope all aspects improve for you , thanks very much for sharing the wisdom you have, I’m 64 and in fair medical shape but I’m definitely getting multiple eyes on this and was thinking the open surgery is still on the table as an option to consider but again thanks so much! as a former construction electrician I find it easy to forget I shouldn’t be lifting Heavy weight things , best wishes
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Helpful -
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2 ReactionsThanks for your insight and information I wish you the best in recovering, the power of prayer is big ! Keep the faith , we gotta stick around to look after our family !
I'd like to invite @heather1976 to this conversation on abdominal aortic aneurysms. Welcome to Mayo Clinic Connect @heather1976. I've invited you to this conversation to meet @luckybear and @expat69 who recently posted in this discussion as well and may be able to share some of their journey with you.
@heather1976, you mentioned you are wondering on what you should be looking out for since you were recently diagnosed. Did you ever hear back about getting a scan from the vascular specialist? Have you tried reaching out again to confirm they don't want to proceed with that?
Thanks for joining me up here Justin. The specialist has said I will get another scan in May, I don’t have a date yet. I continue to see and feel a heart beat just below my belly button, with a dull pain that comes and goes throughout the day. The pain is nothing I would worry about if I hadn’t had this diagnosis. I feel I should trust the specialist would have got me in sooner for a scan if they thought it necessary, but also I worry things and people easily get overlooked and symptoms get brushed aside. I live in the U.K. and the NHS is severely strained, due to lack of funding from government, and my experience is you have to really push to get any care at all. With something as serious as saccular abdominal and iliac aneurysms and the catastrophic outcomes if they rupture, it seems I shouldn’t take any chances. So I guess I’m wondering what other people with aneurysms would do about the pulsating stomach and dull off and on pain I am experiencing. I constantly worry about it and am now trying not to exert myself at all. Always feeling like I should not travel anywhere that isn’t close to a hospital in case of an emergency. May seems a very long time away to be living like this. I’ve been told by a specialist I saw after my initial diagnosis that I would most likely need surgery at some point and it would need to be open surgery, not EVAR. The private specialist I paid to see gave me much more info then the NHS appointment specialist which was helpful but also worrying. The thought of all of this is terrifying.
Prayers for you to have a greater recovery. You went through so much to get where you are today.
Hi: My AAA has been holding at 3.9, and my doctor has me doing my ultrasound every year. It has not grown in 3 years as of now. I am due again to be checked in April. I hope I never have to get the surgery, but I find peace in knowing that they are constantly making great advances in more safe surgery for all kinds of issues. My cholesterol and BP have been pretty good, and I know my doctor seemed more interested in keeping the BP stable for me. Hope you continue to do well.
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