care after aortic dissection

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I had an aortic dissection four months ago. The type A was repaired by a cardiothoracic surgeon during open heart surgery. The Type B portion in the abdominal part of the aorta is being treated with blood pressure meds and a beta-blocker. I have had several follow-up chest and abdominal CT scans since my surgery.

For awhile it seemed as if no doctor was tasked with caring for my aorta. At one point I was asking questions like "how much weight am I allowed to lift?", "what sorts of activities and exercise can I do and what to avoid?", etc. I asked my cardiologist and he deferred to my cardiothoracic surgeon. He deferred to my cardiologist. Catch 22.

It seem I was not in anyone's specialty and I felt abandoned. I did a lot of reading on medical forums and medical sites on the Internet and learned more about my condition.

Have others who survived aortic dissection had the same kind of problems getting information from and getting questions answered by your doctors? Am I the only one who feels like no one is "in charge" of my condition?

Also, on a number of medical sites I found treatment info that said that dissection survivors should have CT or MRI scans at three months, six months, and one year after surgery. What was your experience - did you have all these scans the first year?

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  • Posted

    Wow! Shocking! I'm happy to hear that you've made it and you share your experience with us! I have also been diagnosed with a 4cm ascending aneurysm a few months ago, I was panicking and started running from dr to dr trying to get more information😰I know all about. How was the surgery experience? How big was your aneurysm and how old are you?Did you know you've had it? Or this was a surprise?

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    • Posted

      I'm 58. I had a thoracic aneursym that was 5.3cm. I had no idea I had it. I was sitting in front of the computer at home one Sunday afternoon, just goofing off - not working - and I had a funny pain in my breastbone. Not a real bad pain buto strange. It moved slowly from the top of my breastbone to the bottom and thirty seconds or so later the pain was gone. I thought about going to the ER but wasn't sure whether it was serious or not. About five minutes later, my right leg gave out and I couldn't walk. We went to the ER and they did test after test, brain MRI, chest CT scan, etc. They didn't diagnose my problem as an aortic dissection until nearly 24 hours later when they did an ultrasound of my chest and discovered that my aorta had dissected from the root to iliac artery. They told me I needed emergency open heart surgery. The next thing I remember is waking up after surgery and hearing them tell me that they were removing my breathing tube. I was in the hospital for nine days total.

      I have a 9" scar down my chest now. I had zero post-operative pain - immediately the surgery and all the way through my 3 months of recovery - except when I developed a mild dry cough for about 6 weeks. Then my chest would hurt some after coughing. The cough went away on its own eventually.

      Now, four months later, I'm trying to find a doctor who will take responsibility for monitoring my aorta and keeping me informed about what I should and should not do.

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  • Posted

    Hi Timothy

    I had a massive Aortic Dissection Type B Descending in April 2015 and had an EVAR Stent from just after Subclavian Artery to my abdomen. I understand entirely what you are talking about. I see a Cardiac Surgeon for my follow ups since but my surgery was carried out by a Vascular Surgeon, who I have never met, one of his colleagues another Vascualr Surgeon and part of the team has seen me once since! I have had some minor pains and irritations in my chest/heart/aorta area and asked my Cardiac Consultant about this and got no answer only ask your Vascular Surgeon - Oh Dear? The Medical profession treat these as two different disciplines but appear to conjoin them as to suit themselves with patients but appear not to speak to each other very much? This blurring of the lines for public consumption is very confusing for us and just deflects answering a serious question! My follow up Scans were at 6 Months and an XRay at 12 months, next due at 2 years this April and my Stent had not moved and was fine. My 1yr 10 months elder brother died from this condition in 2009, a week before his 60th Birthday, I am now 65 and although not having any Cardiac or Vascular issues other than some breathing problems (just as bad for communications between Respiratory/Cardiac/Vascular) have just (Dec20th 2017) been diagnosed with Bowel Cancer, I am hoping that Oncology/Colorectal/Medical disciplines will be clearer and easier to speak to about but I dont hold any hopes so I am researching early! BTW I am near Kettering UK, a lot depends on your location and Hospital, mine were excellent, Leicester and Glenfield - The Best!

    Hope you get your answers.

    Best regards

    David

    PS Previous experience of a broken neck, C1 Jefferson Fracture, Neuro Surgeons and shoulder injury (Orthopaedic Surgeons) comms between these disciplines was just as bad!

     

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  • Posted

    We understand just what you mean when you write about feeling "abandoned." After a angio-gram and the assessment being that my husband has a 4.5 cm aortic anuerism, and being told they don't perform surgery unless it's 5.5 they sent us on our way and said "See you in six months. The only material they gave us was what surgery would intail. My husband also has one artery that is completely occluded. We've found out information from this site, "Patient." where we can view and discuss with others as yourself, about the aortic anuerism. HE did have a echogram in December to detect if his "Leaky" heart has changed. We finally see the Doctor on January 13. He will have his next MRI in five months. He hasn't had pain, which is a good thing. He takes two BP medicines and a statin to control the pressure of the anuerism. He retired last week. We are going forward and enjoying life as best we can. He is 65.

     

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  • Posted

    My nephew had a Thoracic Aortic Dissection in April 2016. It was a unwelcome surprise. He survived the surgery which was stenting and was followed closely during his recovery. I had open heart surgery to repair a Thoracic Aortic Aneurysm 5.8cm in May 2016. I have been followed closely as well. In fact, I have a follow up appt tomorrow 1/10/17.. Everyone has a different experience. I read someone on here said no pain after surgery..fantastic.! My pain was excruciating, did I say excruciating?!!! I am glad the pain finally subsided. Pain but no complications..I am thankful!. My aneurysm was followed for 8yrs (waiting to reach 5.5) before I had surgery. The surgery was an experience I will never forget. Be diligent about your recovery, take care of yourself. My nephew and I had 2 different doctors, circumstances, surgeries and hospitals but we are both very pleased with care we have gotten..
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    • Posted

      Gigi, how long after surgery before you felt halfway normal?  I've been 2 months out and still have chest pains and stay short of breath when I get up just to walk.  Going in for chest exray today.   

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  • Posted

    Forgot to say I am a 57yr old female. No other health issues. My nephew is 50yrs old and has high blood pressure and was on meds prior to surgery.
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  • Posted

    I am a 70 year old female who had an emergency aortic dissection in November 2016.  It also was a type A and same treatment for descending aorta.  My experiences with trying to get info from the cardiologist and thoracic surgeon resulted in the same catch 22.  I have had breathing issues since the surgery so now a pulmonologist is also involved.  Since surgery I have had a cat scan and several chest X-rays.  Apparently part of my left lower lobe has collapsed.  I am not able to get any answers as to why.  It is so frustrating.

    My cardiologist scripted cardio rehab but I learned Medicare does not cover cardiac rehab following aortic dissection.  Can you believe that?....and the cardio did not know that!  So more frustration.

    I too have sought some answers on the internet but found most sites too technical to understand.  Can u share any u found helpful?

    Good luck with your recovery.

     

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    • Posted

      I also am having breathing issues after surgery.  Had chest xray yesterday.  Waiting for answer.  Is this a common issue after surgery?  Two months out after surgery, but still have pains in chest that come and go...some burning, stinging pains as well.  Is this common?  If so, how long does it last?
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    • Posted

      Strange that Medicare doesn't cover cardiac rehab. My insurance is paying for it. I wonder if maybe whoever processed your Medicare claim is misinformed. Can you appeal the decision?

      I still have no solution to my medical runaround. I'm still trying to get one of the surgeons and cardiologists to take care of my aorta long-term. From other people I've talked to and from the responses I've seen here, I think this problem is pretty common no matter what's wrong with you. The medical system is broken.

      From what I've read about aortic dissection, the standard for care seems to be CT or MRI scans at 3 months, 6 months, and one year after surgery and then annually after that. I've read that we should not lift more than 20 lbs and although walking is OK, I think strenuous exercise is out.

      I had no pain at all after surgery so I can't say anything about the pains you're experiencing but I think you should talk to your surgeon about it. He/she would know better than anyone what's causing your pain.

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    • Posted

      I am curious about how your Medicare reimbursement was submitted.  The cardiac rehab depts I contacted here noted the 7 options of heart conditions reimbursable but aortal dissection is not listed.  I am getting monitored "conditioning" rehab.  What types of exercises did your rehab include and was it monitored?

      I'm thinking talking to the surgeon would result in being referred to the cardiologist...same old catch 22.

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    • Posted

      My cardio rehab is 3x weekly. They take and note my blood pressure at the beginning and end of each session and note my weight. Then they hook me up to a small, wearable cardiac monitor with three electrodes stuck to my chest and rib cage. It transmits pulse and EKG info wirelessly to computer monitors watched by their staff. Then I go do aerobic exercise there. Everyone seems to have their own exercise plan designed to their needs. I do 10 minutes on the adjustable stationary cycling machine at a low to moderate level. Then I walk 20 min on the treadmill at 1.5% incline at 2.8 mph. Then I do 15 min on a recumbent, seated elliptical trainer
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    • Posted

      My last comment got posted before I was finished.

      Finally, I do light weight exercises using rubber band -like elastic straps to provide light resistance. I do chest and back exercises this way and also do two sets of standing curls with 8 lb. dumbells. That's it.

      I was on private insurance previously which paid for three months of cardiac rehab. At the beginning of the year I switched to insurance coverage by the State of Texas (my spouse is a state employee) and that insurance is now covering my cardiac rehab. I do not understand why Medicare would not cover this.

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    • Posted

      Thank you for your reply. I think it's crazy about Medicare and since Medicare doesn't cover, my secondary insurance also does not cover cardiac rehab.

      Some of my conditioning rehab is similar to yours but I do not have the heart monitoring you do. Mine seems designed to help restore my chest, shoulder and neck muscles/nerves affected by the surgery...but at least it's something.

      My next cat scan is scheduled for early March requested by the surgeon before my next visit. That would be 3 mos after my initial visit following my release from the hospital.

      Again thanks for your replies.

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    • Posted

      Today was my first appointment with the pulmonologist who saw me in the hospital and performed my broncoscopy.  I left the hospital on oxygen and continue today even though the doctor saw improvement in my latest X-ray because my pulmonary tests indicate I still need oxygen when active.  I also have chest pains which may now be a result of conditioning rehab I have started.  Really not sure and any chest pain can be worrisome.  Doctor says be patient....I underwent major surgery.  Maybe we need to be more patient?
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    • Posted

      I'm doing fine, GmaRose. Earlier today I talked to the cardiothoracic surgeon who worked on me and he had me get my upcoming 6 month CT a little early. I won't know the results until he gets a chance to look at them in the next few days.

      Since my cardiologist doesn't seem to know much about aortic dissection, my cardiothoracic surgeon said he would be happy to do my follow-ups. It's a huge relief to have someone "in charge" of my recovery.

      I asked him about exercise and he said that as long as I wasn't straining or getting winded that it should be ok. Going back to the gym and lifting heavy weights again is not in the picture, though.

      He said that keeping my blood pressure low and taking a beta-blocker to reduce the force with which the heart contracts are the most important things I need to do. He said thathat following a low sodium diet and keeping my arteries "clean" was important too.

      How are your chest pains and your breathing? A lot of people have said that they have pain after surgery. I did not for some reason (for which I am thankful!). If you're not sure whether your pain is normal or not you should probably ask your surgeonm

      I'm relieved to have someone

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    • Posted

      Had chest exray last week....showing slight COPD, but nothing else.  Primary doctor wants me to come in...will do this week....chest pains are getting less severe.....I came home with oxygen also. but have sent it  back.....may have to do it again....how do you use yours when you are active?  You may be right, patience is something I've never had, but also, this surgery put me down so bad.  I'm just afraid I'll never be normal and be able to do what I was doing.  Truly, with the surgery that was performed, I'm probably doing pretty good...sure hope the 6 month mark has a lot of improvement!  

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    • Posted

      I guess my biggest frustration now is that I seem to have reached a plateau...not much improvement lately.  The "pain" in my chest is more like stiffness and aching.  The big deal is the dependence on oxygen.   Can move around my home..even upstairs...with the home concentrator and have a 3hr travel tank which is weighty and cumbersome.  Talk about adjustments to my lifestyle since the surgery.

      So my choices are to push on or push on.  The emotional healing and acceptance is as difficult as the physical.  Here's hoping for future improvements for us.   Also thanks to Timothy40679 for his comments.

      Keep in touch.

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    • Posted

      My sister used to be a nurse and says that it takes the body about a year to recover after major surgery. Were you doing any of the exercises you're doing now before surgery? I used to go to the gym regularly before surgery and found that after times where I hadn't been to the gym for a few months that my muscles would get pretty sore the first few times back at the gym. So if you're new to the kind of exercise that you're doing, you will get sore muscles. Since you just had major surgery, you will probably get a double whammy when exercising - due new exercises and due to recover after major surgery. Hang in there - it has been less than three months since your surgery according to your first post.

      I don't know anything about what television commercials call COPS, but I do know that doing regular aerobic exercise will improve your body's efficiency at using oxygen. I was a runner when I was in my 20s. I started out running a few dozen yards/meters then having to stop and rest. Then I'd run a little more again, rest, run, rest, run... at first it seemed ridiculously hard but over time it got easier and I worked up to running 3 miles or so just about every day. If you keep doing aerobic exercise and increase the pace ans/or dis rabid

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    • Posted

      If you keep increasing your pace and/or distance over time, you will become more fit. This could help you lose the oxygen tank in time. Be sure your doctor and your cardiac rehab people are ok with whatever exercise you do, of course, and don't try to make changes too fast. Your cardiac rehab people can help you decide how often to increase your aerobic exercise.

      I think you may be expecting too much too soon from your recovery. You've just had major surgery; give yourself plenty of time to recover.

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    • Posted

      Thanks for your words of encouragement.  Not being a patient person and having been active, this has been quite an unexpected change for my life.  I have never been a person to exercise but I'm being faithful to my simple program.  I will try to keep the word PATIENCE I my daily vocabulary.

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    • Posted

      Hi Rose - I am Rod and I was diagnosed with a 5.1 AA in November 2017 - I have a further scan later this month but in the meantime we are booking travel, I am still walking 7 km a day and we still scuba dive - I am 61 - I see that your thread is a year old so maybe I wont get a response but I was wondering how things are panning out for you?
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