care after aortic dissection

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.

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.   

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.

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.

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.

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.

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

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!  

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.

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

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.

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.