Aortic dissection

Posted by lorettat @lorettat, Oct 20, 2020

I was recently diagnosed with a aortic dissection the doctors put me on elliquis and a baby aspirin. When I was hospitalized the specialist said he thought I had a genetic disorder. My body produces blood clots at an alarming speed at least 6 have been detected in just the past year and those were only found because I was relentless and made them check for them. Sadly enough I googled my symptoms and figured out that I had blood clots they finally listened to me somewhat and finally put me in the hospital and ran a few test but as I don't have insurance or any money the soon released me and sent me home with an aspirin and a prescription that cost $800 a month with no way to afford this medicine and the words of the nurse that said if you don't take this medicine you will die. I am scared to death. I can't sleep for the pain is unbearable when I lay down, I feel like I have restless body syndrome and the pain in my arms and legs are in arable. The last time I went to the e.r. because the pain was so bad and I had a ripping pain in my stomach, they basically laughed me out of the hospital. I left in years not only from the pain but because of the horrible way I was treated. I'm not a rocket scientist and definently not a doctor, but I don't think I am being treated properly for my condition. But as I said I don't have the resources to afford the medical treatment that I feel I should be getting. I need help is there any out there?

Interested in more discussions like this? Go to the Aortic Aneurysms group.

@amandaburnett

Hi @jonpens, welcome to Mayo Clinic Connect. You will see that I moved your discussion to a conversation that was already started on aortic dissection by @lorettat. This allows for you to connect with people that are going through similar medical experiences. I am sorry to hear about your husband's condition. @cobweb recently had a follow up appointment and me able to offer some suggestions on what to ask your husband's physician.
Are you possibly seeking a second opinion locally or are you considering Mayo Clinic?

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I have had 2 different appointments. One ith Cleveland Clinic, the other with top surgeon in Toledo. Bottom line when i was found to have an aneurysm i panicked.. Si i found interviews wiyh surgeons from Cleveland Clinic and Mayo Clinic on line. Then i followed instructions. Remain active, reduce stress, no lifting over 50 pounds. Questions like lets operate and get this over with were dealt with. So i bike everyday. garden. golf, etc. Was told at CC that i had 9 years. Ok, not sure why but i am up for that. My number is 4.7 and has stayed pretty constant. So my advice is turn off the TV politics etc. Does you no good. I watch cowboy movies and various movies, golf sports etc. Good luck

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@cobweb

I have had 2 different appointments. One ith Cleveland Clinic, the other with top surgeon in Toledo. Bottom line when i was found to have an aneurysm i panicked.. Si i found interviews wiyh surgeons from Cleveland Clinic and Mayo Clinic on line. Then i followed instructions. Remain active, reduce stress, no lifting over 50 pounds. Questions like lets operate and get this over with were dealt with. So i bike everyday. garden. golf, etc. Was told at CC that i had 9 years. Ok, not sure why but i am up for that. My number is 4.7 and has stayed pretty constant. So my advice is turn off the TV politics etc. Does you no good. I watch cowboy movies and various movies, golf sports etc. Good luck

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Interesting you were told not to lift over 50 pounds. Had a boss with an AA, and was told never lift over 25 pounds. His AA was in the high 3s for over a decade. He retired years ago, and would be about 90 if still living.
I would think the less you lift the better.

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@funcountess

Hi,
How are you doing?
Did you get your insurance yet?
Still in pain from your blood clots?
It might help you feel better if you are able to get help with your addiction problem. That could be part of your health issues.
Let us know how you are doing.

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I am still fighting with SSI and yes I am still in pain but also noticing more symptoms like being out of breath after waking 25 to 30 feet, my legs seem to be extremely weak, up the underside of my left arm hurts and I have a rapid heart beat. I also have acid reflux bad and have had for about 2 weeks now. This morning noticed a pain in my upper rib cage in my back. And yes I'm sure that a lot of this is tied into my drug addiction. I try to remain sober but as all adicts do I am not perfect and do occasionally fall off the wagon. I wish it not true but unfortunately it is. And I can assure you that if getting high was all I am seeking there are far more easier ways to do so then to be ostrasized, attacked, and rediculed, and stereotyped by doctors, and the general public for something I didn't ask for it to become. It is far easier to score on the streets with less humiliation and embarrassment then to chase pill prescribing doctors around and a hell of a lot cheaper as well.

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Hello everyone! I am new and confused. 🙂

I am now six months out from an emergency repair of an AAA with Stanford type B dissection (quite long, I'm told). I've received excellent care, but have also been left with pretty much "go home and enjoy life". I was in excellent shape when the emergency occurred, and am now off of all medications other than metoprolol for blood pressure. No warfarin, no lasix, no arrhythmia medication, etc. Having read the experiences of others here, I realize how lucky I am. At 72, I now have an Edwards LifeSciences aortic valve and lead a pretty normal life. I've returned to running (intervals on my daily walk) and to lifting light weights. But I was a competitive masters track and field athlete before the emergency, and I'd like to know more about procedures that might actually correct the dissection. That is, I'd love to return to my old lifestyle, and am willing to take some surgical risk to do such. Has anyone found a clinical trial or established procedure for going beyond "go home and enjoy life" status? Thanks, in advance, for any pointers. Lucky and grateful, Rick

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Canadian drugs (including blood thinners – I take xarelto – are MUCH cheaper.) I pay $135 for a 3 month supply! I see there is now a generic for only a fraction of that (and other meds too). Mailing is $10-15.

It is disgraceful what big pharma does to us!!
Here is one economic pharmacy (they price match). If you want to search yourself just make sure you only order from a CIPA approved list. (CIPA.com)

Good luck!! Your story was heartbreaking.
https://www.medicationscanada.com/

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check my post a bit below yours – I accidentally posted it there and it was intended for you.
About how to get meds MUCH cheaper.

(Also ck thread in AFIB group)

Admins won't let me cut and paste it here too.

So hoping you get help!

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Hi.
I'm made this account specifically to ask questions about this topic, and/or to speak to real people with knowledge/experience of Aortic Dissections.

I will start with some context.
I'm a "relatively" healthy male, 26 years old.
Not fit but not obese.
I have diagnosed PTSD & Panic Disorder (this'll be important later)
Physically I have a sinus arythmia, asthma & chronic pain from Scoliosis/Unequal Leg Length.

Now, I have become almost completely ruled by fear involving Aortic Dissection. The anxiety I've experienced after learning about them has made my psychological health immeasurably worse.
I am unable to be treated for my anxiety, and so that avenue is closed to me for now.
My question(s) have to do with more specific things about Aortic Dissection than doctors I've met in person & the internet are able or willing to explain (every doctor just says I'm too young and to get my anxiety treated which, I mean I would if I could)

I suffer, regulary, from intense bouts of acute chest and back pain. Out of nowhere, my left pectoral will feel as though I've been stabbed, my left, right, middle AND lower back as well.
I'm currently dealing with a bout of moderate pinpoint upper back pain that comes and goes and when it comes is pretty bad though not terrible. Same with my chest.
I cannot stop worrying about "well what if this time I ignore it and the worst comes to pass" etc. however nearly all the symptoms for Aortic Aneurysm save loss of conciousness, I 'seem' to feel every so often.

Is there anyone who has survived one of these harrowing Aneurysms? Anyone who knows someone who has?

Because the idea of differentiating these, sometimes excruciating pains, from aortic danger seems to be frustratingly abstract for many.

Is the pain so severe that you'd definitely notice?
Does dizzyness always come with it?
Can the pain come and go?
Could it be confused with Iliocostalis Thoracis pain or even Costochondritis?
My goal here is to converse with anyone who's knowledgeable at all on this topic. Someone/anyone who'll be willing to share thier information or maybe answer some questions.

I apologize for the long post, and I don't mean to seem disrespectful about the severity of Aortic Dissection by not having one and putting my post in it's group. I'm not familiar with or used to online forums in general.
However I have no insurance and cannot drive myself to doctors often, when I am lucky enough to be driven by a friend as soon as they hear/ read 'Anxiety Disorder' I'm brushed aside with no effort further put in. Just "have a xanax and leave".
It's maddening.
I would simply get screened or even get my heart evaluated if I was able but my local hospital doesn't even have the equipment for a stress test, much to my cardiologists annoyance.

I plan on saving up to try to have what's causing my pains looked in to but I wish I could just be screened for Aneurysm just to rule it out and end this 2 year constant fear.

Either way and regardless of replies, thank you for reading.
I hope you all are safe and well.
Thanks for your time.

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@redhound

Hi.
I'm made this account specifically to ask questions about this topic, and/or to speak to real people with knowledge/experience of Aortic Dissections.

I will start with some context.
I'm a "relatively" healthy male, 26 years old.
Not fit but not obese.
I have diagnosed PTSD & Panic Disorder (this'll be important later)
Physically I have a sinus arythmia, asthma & chronic pain from Scoliosis/Unequal Leg Length.

Now, I have become almost completely ruled by fear involving Aortic Dissection. The anxiety I've experienced after learning about them has made my psychological health immeasurably worse.
I am unable to be treated for my anxiety, and so that avenue is closed to me for now.
My question(s) have to do with more specific things about Aortic Dissection than doctors I've met in person & the internet are able or willing to explain (every doctor just says I'm too young and to get my anxiety treated which, I mean I would if I could)

I suffer, regulary, from intense bouts of acute chest and back pain. Out of nowhere, my left pectoral will feel as though I've been stabbed, my left, right, middle AND lower back as well.
I'm currently dealing with a bout of moderate pinpoint upper back pain that comes and goes and when it comes is pretty bad though not terrible. Same with my chest.
I cannot stop worrying about "well what if this time I ignore it and the worst comes to pass" etc. however nearly all the symptoms for Aortic Aneurysm save loss of conciousness, I 'seem' to feel every so often.

Is there anyone who has survived one of these harrowing Aneurysms? Anyone who knows someone who has?

Because the idea of differentiating these, sometimes excruciating pains, from aortic danger seems to be frustratingly abstract for many.

Is the pain so severe that you'd definitely notice?
Does dizzyness always come with it?
Can the pain come and go?
Could it be confused with Iliocostalis Thoracis pain or even Costochondritis?
My goal here is to converse with anyone who's knowledgeable at all on this topic. Someone/anyone who'll be willing to share thier information or maybe answer some questions.

I apologize for the long post, and I don't mean to seem disrespectful about the severity of Aortic Dissection by not having one and putting my post in it's group. I'm not familiar with or used to online forums in general.
However I have no insurance and cannot drive myself to doctors often, when I am lucky enough to be driven by a friend as soon as they hear/ read 'Anxiety Disorder' I'm brushed aside with no effort further put in. Just "have a xanax and leave".
It's maddening.
I would simply get screened or even get my heart evaluated if I was able but my local hospital doesn't even have the equipment for a stress test, much to my cardiologists annoyance.

I plan on saving up to try to have what's causing my pains looked in to but I wish I could just be screened for Aneurysm just to rule it out and end this 2 year constant fear.

Either way and regardless of replies, thank you for reading.
I hope you all are safe and well.
Thanks for your time.

Jump to this post

Hi @redhound and welcome to Mayo Clinic Connect. I am sorry to hear that you have anxiety surrounding this diagnosis. You will see that I added your post to a discussion talking about aortic dissection. I did this so you can connect with the different members who have actually had an aortic dissection like @realitytest, @rickh2, @lorettat, and @cobweb

Can you share what started this intense fear of aortic dissection?

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Hello, redhound. it does indeed sound as if you are suffering from a panic disorder. It is a shame you don't have insurance and have a problem with transportation besides which your area lacks the equipment to even do the r/o tests.

Is there any available clinic providing the tests as well as a psychotherapist services cost free? My area has such a generous service for both to persons with low incomes.

I am very sorry you are suffering from his trauma. I remember I when I was entering puberty, I was terrified of breast cancer. I felt what felt like a lump in my breast. I. was terrified I was suffering from this dread disease. I. was unable to sleep and didn't dare to confide in my mother for years. Finally I confided in her and she took me to the doctor, Having dense breast made me all the more fearful.

I don't know whyI I was terrified (perhaps because my grandmother contracted breast chest – also from occasionally seeing the missing area on her chest, fear of death – or something to do with puberty.

I'm recounting my experience to showing i can understand I can empathize. Later in my youth my terror lessened and as a young adult I went on to study clinical psychology. It helped me to understand that my terror was indeed a psychology phenomenon.

Contact your local social services agencies (I'm sure you'd qualify on the basis of income) to get a social aid who could check what services you can get help from. There's no reason for you to suffer so much from your irrational fears and also arrange for a physical. I won't speculate on the origins of your terror. You are not the only person suffering from such anxiety and you can surely get help with from your psychology illness at the same time you can get a basic physical check. Many people suffer from terrifying anxieties from many sources. There's no reason to suffer indefinitely without seeking relief.

I wish you help from this nightmare you are experiencing. Have hope that you can and will find relief from this illness causing you such great stress. And if you are not taken seriously from your first doctors from whatever source, continue to seek. You deserve to escape from this overpowering pain is dominating your life.

PS Please forgive me for my assumption that your fear is psychologically based. Recall that I am a trained clinician and your account is pretty classic for such a problem. You are certainly not the only person to suffer from distortions of medical self- image. I shared my own history to show you how much I understand how such sufferings can arise. (Xanax would absolutely NOT suffice to solve the problem, either.). Now I am the one to apologize for such a lengthy reply!

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