Abdominal Aortic Aneurysm repair by EVAR

Hi expat69
My surgeon has lost credibility with me.
I went to the hospital for a very painful abdomen. It was pulsing at intermittent times. Long story short I will only try to stick to the relevant issue.

The hospital did a work up and the ER doctor said my CT scan showed a torn celiac aneurysm. ( no bleeding mentioned) and said that she will have their surgeon look at the CT scan film.

She comes back about an hour later and says “ we have to send you to another hospital for emergency surgery. “ I said ok and an ambulance that looked like an ER on wheels transferred me to a trauma hospital.

Once I got there and waited five hours to be seen as it was packed with drug addicts, drunks, and people with the sniffles. I was whisked into an examination room and a cardiovascular surgeon asked me questions after which he determined that since it isn’t bleeding (yet) I could be discharged with the promise that I see my own cardiovascular surgeon ASAP. He was only going by what the first hospital gave him. He didn’t do his own CT scan or any other tests.

I get discharged and as soon as the ambulance took me home I had the nurse ( I live in an assisted living facility) call my own surgeon.
His answer was “all hospitals say ASAP “ I will see him at an upcoming March appointment “ 2 months away!

The nurses got together and the one that called him this time demanded that he see me ASAP. He caved but seemed annoyed at having to see me ASAP. So I went to see him in 3 days.

They did a sonogram and he said it hasn’t changed since last year and “don’t worry about it, I will see you in a year! “What about the tear?”
I asked him if it could get larger or more torn in the near future.

He said that it could bleed (I’m on Coumadin due to a previous aortic valve replacement) I’m prone to A-FIB as well and have high blood pressure and diabetes type II. He blew me off and said “I’ll see you in a year!”
What to do?

Yes , I realize I’ll have to do something eventually, just got 2nd opinion from a reputable surgeon today, he’s got the measurement @ 4.7 along with a Ct radiologist said 4.5 and a mri radiologist (different cause they discovered surprise pre cancerous cyst in my pancreas while checking this AAA) the Sloan Kettering radiologist measured at 4.6 , so vasc surgeon yesterday said he would wait on EVAR and sono again in June it’s not near enough to the 5-5.5cm threshold , I hope it stops growing for a while thanks!

With immediate lifestyle change, and avoid all that the doctors told you, you can slow down the grow rate.

Best wishes

@andytheman
@luckybear

You are not alone, we are many who have suffered before, or now, with similar problem as you.
You are in our thoughts, I can promise you that.

I apology if I sometime reply short, and or not to all you write about.

I have a really extreme painful day every 4-5 day, when i'm like a snake on the floor, in so much pain that I cry, even I already taken all kinds of opioids prescribed.
If I reply on those days, it will not be a complete reply.

As many experience, doctors scare us, then downplay our problem, then tell us to wait ...
Leaving us alone with our thoughts, worst fear, worries, and often pain too.
We feel so alone, unsure what to do next, and we can hardly sleep because we are so worried.

In the end, we have to try again and again to find a doctor who listen and act, not tell us to wait for months, or prescribe valium.

I pray for you and others, who are in extreme difficult situation, and you are not forgotten by us, here.

Expat69
🫂

I don’t find your sometimes short replies ungratefully.
You and I (And others) are in the same boat. My rush to the ER on the 27th of December was scary and very painful as I couldn’t get comfortable no matter what position I placed myself in up until the morphine kicked in.

This was only done after spending 5 hours doubled over in pain in a wheelchair. There were no exam rooms available as the place was packed with people who seemed to just be there because they had the sniffles, wasting valuable time and resources.

What irks me is that they finally did all the work up’s once in the room, only to have the ER doctor and nurses work on dulling my pain, hydrated me with a bag of liquids then the ER doctor walked in to tell me.

“We are transferring you to another hospital “ and “your CT scan showed that you have a tear in your celiac artery and after a consultation with our specialist we have decided to transfer you to a trauma hospital for emergency surgery “ ok I said “no problem, you guys I trust”, While feeling scared. I figured they knew what they were doing. I had spent 14 hours at that hospital ER.

Once placed into an ER on wheels, off we went for a 10 minute ride to the trauma hospital. When I got wheeled into the triage area I saw tons of “standing room only “patients and I said to myself “oh great, here we go again” luckily I was passed through the crowd of drug addicts , alcoholics, people swearing at wanting to be seen and just other people lying quietly in their cots waiting to be seen. I took precedent over them but I felt guilty because the others were probably there for hours only to see me wheeled past them. I got a room right away but it took 12 hours total before they discharged me. Hooking me up to a monitor made me feel safe and they kept coming in and out the whole time until a cardiovascular Surgeon came in and we spoke for a while and said “you are going to have to come back to this hospital but because you’re not bleeding we feel that you are stable enough and we feel that you don’t need to be admitted to the hospital for surgery at the moment but you need to contact your cardiovascular surgeon ASAP.” That was December 28th. I contacted my surgeon and he said “oh the hospitals always say that” Then he proceeded to tell me my annual check up was coming up in March and "I’ll see you then” that was almost 3 months away!!

I had my nurse demand that he see me “now “! He caved and made an appointment for me to come in in 2 days.

His secretary was rude and condescending and she wouldn’t let me into the lobby of empty chairs so I stood at the doorway holding the door half open while she talked on the phone. Reason being is I didn’t have a mask on or with me. I forgot to bring one.

Finally she motioned me over and said “Don’t you live in an assisted living facility? I said “yeah” then she said “shame on them for not providing you with a mask” I felt like letting her have it but I held back. She’s worried about a mask and I’m worried about bleeding to death! What an ass! Sorry. Anyways to try to end this long post, I was taken into the “sonogram room” and after about a half hour I was taken to another room for weight and vitals by another “dry” person and told me “the doctor will be right with you “ and shut the door. So I sat and waited looking at big pictures of arteries on the wall when he finally came in and said “there’s nothing to worry about” we didn’t see a tear”
I said “two different hospitals and two different cardiovascular surgeons saw it!” Only when he was ready to tell me the truth when he said it was “no big deal” and that I don’t have to worry about it. I kept pressing him “can it bleed?” He said nonchalantly “it could but we have ways to treat that”
I think he was annoyed with me asking all these questions and I felt he wanted to get me out of here. “Ok? I’ll see you in March next year.” and left.
I followed him out and he went one way and I went back to the witch behind the desk. She didn’t even look up right away and took forever ( after she hung up the phone), to ask me “when does he want to see you again?” I thought, “you don’t know? You have to rely on me? Don’t you two talk or is he going to give me papers?
I said “in a year” and she’s just staring into the monitor in a gaze! Finally she said “is March the seventh ok? I said yes. “What’s a good time for you “ I said around 10:00 in the morning “ she says “I have a 10:00 or 10:30”
Ten I said. She gave me an appointment card and went back to “work “. In the meantime I’m still in pain.
I get back to my facility and our nurse gave me a “real “ mask with instructions that I go up to my room until Monday a week away!
“Why, what’s going on?”

“One of the residents has Covid” GREAT! I sat next to a woman earlier and it was her! Now I’m exposed to Covid!

The following morning they brought me my meal and she said “ there are six now that have covid!” I couldn’t believe it. Some people are walking around with masks and there’s 5 or 6 people in the dining room (we we’re not supposed to gather there) none were wearing masks. My meal server and staff had no masks on until I made a big stink about it by texting the owner/administrator at 10:00 at night. There’s 24 of us living here and we are all considered “high risk “.
Sorry again for this rediculestly long message .

@andytheman

If a surgeon have told me 'your tear is no big deal' .....
I think I would have responded 'are you F.... kidding me'.

How can they 'control' a tear that so far currently don't bleed, but might bleed tomorrow???

That the office staff give you a attitude, is not acceptable, (and she should have face mask for patients) but just proof what we both already know:

When we become older 60+, doctors and staff tend to think 'well this old machine gonna fail soon anyway', and don't give us neither respect, or the best care available as soon as possible. We are seen as a burden, so they often put us on status 'can wait'
We pay taxes all life, we get older, just to be partly ignored or receive second class treatment. It makes me so furious.

The place you live, do you have friends that you can talk with about this??

Our Mental health is so important when one know one has a serious and possibly very dangerous medical condition.
I was lucky to make a new friend who had heart problem, and together we meet almost daily, use each other to went out our concerns, thoughts and everything.
It was, and still is a huge help for me / us.

When I become too self centered about my pain, I read on here on the many others who are in a serious lifealtering condition. Realize that I'm not the only one, helps me to think about them, more than myself.

As long you don't get the help you feel you need - surgery - I hope you continue to search for a doctor that will put you on scheduled surgery soon.

I refuse to allow an incompetent surgeon out of the 50 good surgeons around my area to decide my fate. He is wrong about everything. I’m not going to let him decide wether I live or die from this torn aneurysm.

Some people receive surgery recommended by their doctor for just having an aneurysm never mind a torn one that “could “ bleed out or burst! He is gambling with my “old “ self. I’m also on a blood thinner to prevent clots from forming in my mechanical aortic valve replacement.

I’m even told to be careful when I shave as I could bleed. And that has happened to me several of times. I’m being urged to get an electric shaver in order to reduce my risk of cutting myself. Yet, a torn aneurysm in my artery is “no big deal?”

I’m not going to just lay back and wait for it to blow as the outcome of that happening is usually fatal!

There is a short window between a burst aneurysm and “treatment”. It’s also been said that some people have an aneurysm and don’t even know it. They don’t feel it in their bodies and just drop dead when it occurs!

I know I have a torn aneurysm and so do 2 cardiovascular surgeons telling me I should have it repaired now instead of later in an emergency that may not be survivable!

Only one says “it’s not that bad “ and “it could “ blow out of 3 surgeons , my own doctor! The nurses here say “good you’re ok” and dropped the issue without any evidence.

So tomorrow my PCP is calling me because I can’t go to his office now as I’ve been exposed to Covid. Although I’m testing negative he doesn’t want me to meet him face to face because there’s a lot of people in the waiting room and I may have it and not know it. We’ve gone from one and now the number, almost overnight, is six! Anyway this is not the topic of this thread. So I’m going to get a second and maybe even three opinions.

Just got off the phone with my PCP and he says that my Surgeon knows me more than anybody else and I should wait a year like my Cardiovascular said. And that I should trust him and since he’s been giving you an sonogram for the past 3 years and it hasn’t grown, you don’t need to do anything else unless you notice a problem.

I would probably need a referral from him for a second opinion and I doubt he would do that seeing that my surgeon’s call says not to be worried about it.
And he agrees with my surgeon.

I’m going to call my insurance company next to see what they say as they’ve been a good source to advocate for me and see what they recommend.

@andytheman

The Fight one have to endure is inhuman.
Meeting the wall, ones fear totally ignored by the medical professionals. Wonder if you had been 40 y.o. would they still tell you to wait?
I bet not.

All my life there has been many challenges and obstacles. I learned to never give up, but it takes so much effort, one become totally exhausted.

In your situation, I hope you have friends for moral support, and more important, new ideas how to approach this, going forward.

Write to your local Senator, write to appeal body, write readers post in local newspaper. Continue your fight for the right to lifesaving treatment.

Thanks for your support. I haven’t called another surgeon yet. My insurance company has a counselor for issues like mine. Hopefully I get an answer soon.