Aortic dissection: Got tips to learn more & afford treatment?

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 Support Group.

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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@funcountess

Hello, sorry about your condition.
What is your age, and where do you live(state & city?).
You are not enrolled in the affordable care act?
Depending where you live are you able to get medical in Ca. Or Medicaid in other states.
Have you tried a county hospital? A for profit hospital generally will not be much help.
What Rx was $800.00 a month?
Do you have family that can help you?
I’m guessing with the condition you are unable to work.
I wish you well.

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Don’t stop trying my 50 year old son died in ER 8/27/21 with dissection and the hospital was treating him for a heart attack.

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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.

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@redhound I have experienced a level of anxiety similar to yours, and the good news is that you can beat this! I did, and I figured most of it out by myself. I had fears based on early childhood adverse experiences and fears of the doctors and dentists who I thought would hurt me. I didn't have the emotional support from my parents to be able to handle it even though they told me why I had to endure something that was going to hurt. I feared pain, and started passing out at appointments when I was only 6. That became a pattern for many years on into adulthood. I got good at predicting it when I sensed the dizziness beginning and I would put my head down or lay down on the floor so I wouldn't fall and hurt myself. It didn't help that I was always made fun of for this. It is a real problem, and I was alone in trying to deal with it.

I have had chest pains similar to yours caused by stress that mimicked a heart problem and I do have a condition called thoracic outlet syndrome that increase chest tightness. My dad actually did have a heart problem and had a first heart attack at 50. I sure as heck didn't want that to happen to me, so when he had to change his diet, I did that too and started eating healthy in my twenties. Later in my life when I was in my fifties, I was evaluated by a cardiologist who told me they couldn't find any blockage and the chest pain I had was caused by stress. He said I was doing everything right and there was no reason that I should not live to be a hundred. My blood pressure would also spike when I was really scared or upset. Passing out actually is your body's way to protect itself. Blood pressure that gets too high puts pressure on the heart and arteries, and fainting causes a sudden drop in blood pressure, and you pass out temporarily because it stops sending enough blood to the brain to maintain consciousness. Too much blood pressure can cause a stroke if the arteries can't handle it. In my mind, when I was approaching the same age as my dad for when his problems started, I asked myself if this would happen to me too?

There have been 2 relatives of mine who died from an aortic dissection and an aortic aneurysm. Both were older in their 70's and 80's. A death from an aortic dissection happens quickly, often so quickly that the emergency room hasn't figured out what is happening. Actor, John Ritter died of an aortic dissection within a few hours of feeling ill on the television set. He was nauseated and sweating profusely and was taken to the ER, but they couldn't figure it out in time. My relative had been feeling tired and thought he was having an allergic reaction to spray paint. His friend took him to the ER and they didn't find anything. He was being difficult and second guessing the doctors and they released him. He mostly rested in a recliner the next day. The day after that, he was taken to a different hospital ER and was able to walk in the door, and they thought it was a heart attack at first. They did some ultrasound imaging and diagnosed the aortic dissection, and it would be 30 minutes for them to assemble a surgical team, and by then he was gone. The entire time in the ER had been just 2 hours in which he could walk in the door and die 2 hours later. The other relative was having some back pain between the shoulder blades one evening for probably a couple hours, and she wasn't as sharp cognitively which was a change from the norm. She died in a few minutes, and her spouse found her in another room and she could not be revived. They had known about the aneurysm for years, but it was inoperable and there were no symptoms.

The day that I started to turn things around for myself came because I had developed spinal cord compression from an old whiplash injury that had happened years earlier. Hearing a surgeon tell me that I had significant spinal cord compression that could be doing permanent damage and put me at risk for paralysis sent my blood pressure spiking. I had that old queasy feeling again, but there was no escape. For 4 months, every morning when I thought about having spine surgery, the fear shot through me and my blood pressure spiked (I was measuring it.) I knew that this anxiety was not only hard to live with, but I worried what it was doing to my heart. Why was I doing this to myself? How could I let this happen? I didn't want stress to cause a heart attack like it had done for my dad. That was the beginning of asking myself a lot of questions and learning how to understand my fear and re-frame my thinking.

If you begin to make friends with your fear and understand it, you can ask yourself similar questions of why? What in your past experience has caused similar feelings? How is this past experience linked to your present fear? What is the trigger that sets it off? Understand that your brain will react to stress and fear pushing aside everything else because that was a survival instinct that helped early man not get eaten by some large animal. You are going to have to give your brain some help and advice to let go of some of those episodes. I started by writing down a history of the adverse events in my life and it showed me a pattern of how and why I reacted to fear. Fears get linked in the memories in your brain because when your brain sees the old pattern, it says, let's not waste time, I know what to do, so I will react quickly. When you take the time to examine why, and understand why your brain jumped to a conclusion, you break that link and deprogram that fear. I didn't expect to accomplish that in my life, but I did, and it changed my life completely, not only giving me the confidence to address my medical issues and get care without fear, but to be more confident and content in the rest of my life. I have so much more time now, because I am not consumed with fear. That is not to say that I will never fear again, but I no longer have fear about medical issues. I also know that I have the skills to cope with and accept things, and I also have the power to alter the course of my health in the choices that I make.

I did see counselor to make sure I was on the right track before my spine surgery, and I was doing fine. One good piece of advice was that having gratitude will help chase away fear. It is a positive emotion that spreads the chemistry of the "feel good" molecules in your brain. I made it a point to see my surgeon right before the procedure and thank him for helping me. That was a really good way for both of us to head into surgery. There is of course a bit more to the story.
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

Here is another discussion about fear that may help.
https://connect.mayoclinic.org/discussion/how-can-i-defeat-my-anxiety-about-medical-tests-and-surgery/

Don't give up. You can do this. Fear does not need to control your life or influence your decisions or behavior.

Have you found a counselor that you can talk to? Will you begin a journal to record and discover the clues to your fears? What are the questions that you could ask yourself now about your fear?

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@amandaa

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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Hi redhound I’m a73 year old guy who who fell down at work in April my leg went numb I was ambulanced to the local hospital given a cat scan and told that my aorta had dissected top and bottom but they could not do the surgery there Back in the ambulance and taken 30 miles away where surgical team was waiting Taken immediately to surgery wher a fantastic surgeon 6 hours later had repaired my aorta amd saved my life

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Hello. My name is Michael and I am a survivor of a Type A & B Aortic Dissection which occurred in June, 2017. Once diagnosed in the ER, I was immediately rushed to the OR for an emergency open heart repair of my ascending aorta. The descending dissection was not repaired and extends to my abdominal area. I see my cardiologist annually and have an ultrasound to check the status of my repair and the Type B dissection. I am on Amlodipine, Metropolol (100 mg), Olmesartan and Rosuvastatin. I’m relatively active, reasonably fit and about 10 lbs over my ideal weight. My questions are simply the following: Is monitoring the Type B annually often enough? Should I see someone for a second opinion? Are there natural ways to control blood pressure and heart rate to get me off the drugs?

Thanks, Michael

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@rm34jones

Hello. My name is Michael and I am a survivor of a Type A & B Aortic Dissection which occurred in June, 2017. Once diagnosed in the ER, I was immediately rushed to the OR for an emergency open heart repair of my ascending aorta. The descending dissection was not repaired and extends to my abdominal area. I see my cardiologist annually and have an ultrasound to check the status of my repair and the Type B dissection. I am on Amlodipine, Metropolol (100 mg), Olmesartan and Rosuvastatin. I’m relatively active, reasonably fit and about 10 lbs over my ideal weight. My questions are simply the following: Is monitoring the Type B annually often enough? Should I see someone for a second opinion? Are there natural ways to control blood pressure and heart rate to get me off the drugs?

Thanks, Michael

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Hi Michael
I had an emergency double aortic dissection. June 2022. I had 3 repairs. One at the root of my aorta where it joins with my heart. One in the ascending aorta and one in my descending aorta which they also inserted a stent. Mine had been discovered (accidentally) about a year and 4 months before the emergency repair. It measured 4cm at the time of discovery. I am on Metropolol but .25 in the am and .12 in the pm. Previous to this I was never considered high blood pressure. After 6 months I had BPs in the 130s to 140s over 70s and my Metropolol was increased by the half dose in the evenings. I no longer salt food at the table. I walk, bike, and swim for exercise 5-7 days a week. I drink a lot of water. My BPs have been around 117 to 127 normally over 60-70. I try to stay away from salty food. I go next week for my one year check. However, I had 2 spells where my BP went high and I went to the ER because I had lost balance. After the second incident they saw me last February and performed all of the same tests again. I still get these spells but my BP does not increase and I don't lose my balance as bad as I previously did. I guess what I am saying is the once a year it "normal" but make an appointment if you have reasons to be concerned. I will also be 10 pounds lighter when I go back next week and that helps with BP too. Unfortunately I know some pretty thing people that have BP problems, so it isn't just us. I am 69, female, and never had any health concerns before this. If a second opinion makes you feel better, then do it.
Best wishes!

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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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I have a AAA that's at 3.6
My doctor operates when it gets to 5.0.
I just had bypass surgery for a popliteal aneurysm that was 3.8. Another popliteal aneurysm was found in my other leg but it's small.

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