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Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection

During one  of my trainings, I met a woman who's husband had an AD a few years ago. While sharing struggles after the surgery, she made a comment about her husband getting "phantom pains". Although I was not sure about her used of the word "phantom", it made me a little uncomfortable because I have experienced the same pain several times. 

A few months after the surgery I experienced the same pain that took me to the hospital before the surgery. It has happen several times after that, and the intensity and the length has increased. It normally starts with weakness of the legs, then it radiates to my core area. The last time it lasted about 10 to 15 minutes. After it goes away, I am fine. 

I tried to ignore the pain, but it is impossible. It really scares me. It has been almost 17 months since my surgery. Have any of you experienced this problem or something similar?

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I did not have any pain with my AD but I do get this pain in the left side and cent of my chest that radiates down my arm. When this happens I am also very tired and dizzy. The only explanation the doctors can give me is GERDS. There is no test for GERDS, but they did do a EKG, CT scan, ECHO and stress test to rule out any heart, AD, related issues. I don't know what to think about it though. Have you talked to your doctor? What does he/she say? I would get it checked out, even if it is nothing serious, it would give you some peace of mind.

*hug*
Kiimberlee
My doctor did not know what it is. My last CT was fine and my bp is fine.

T

 

That is good news. Have they checked out any thing else, it my be spine related. Or like in my case GERDS. Anything lead up to the pain, like eating certain foods, exercise, etc. I wish I could be more help, but I have so many issues causing so many problems, I'm never sure which one it is. I've had tumor removed from my spinal cord so I have nerve damage, so leg, back pain could always be that for me or something else, of course there is the GERDS which at first they said GERDS then it  was a gall bladder attacks, but I had my gall bladder removed 2 years ago(that was another fiasco, 5 1/2 hour chisel it out surgery followed by almost dieing of pneumonia)So we are back to GERDS for the chest, arm pain.  I also had scoliosis surgery  22yrs ago, and as I get older I get major lower back pain from that. One of the issues that results from AD is that sometimes my doctor forgets to go beyond dissection and explore other possibilities. It may not be related to your AD at all and may be something else entirely. Then again since I do get it too, maybe it is just another one of those after AD surgery things. I hate unanswered questions. Wishing you the best of luck.

 

Kimberlee

You are giving me a lot of possibilities. Than you so much. I will let you know what happens.

Phantom pain is a tough one to explain.  I have heard stories of those who have had limbs removed and the people still feel sensation as if the limb was still there - it has to do with the memory within our nerve system.

For me, they have used that term to explain my rib issues.  But I tend to believe it has more to do with all the nerves, muscles, and tissues that get severed during the surgery and since most often our rib cages are severed in some way in order to get to our aortas, there is alot of residual negative issues like pain, aching, inner itching and so forth.

I read your blog (your story of what happened) and no wonder you would be concerned as your experience drug out over how many days, even years if you consider back when you started to feel like an elephant was sitting on your chest.  Then you survived your dissection and surgery, but how do you trust "how you feel" since it took so long for them to figure it all out.

 I was physically fit also, didn't smoke, didn't do drugs, didn't drink, exercised etc., had everything going great and then it all turned upside down - I don't think the mental struggle we go through post surgery ever completely goes away.  Again, we can't trust even our "normal" state, since we were basically in "great" shape prior to the dissection/surgery.

So many outside factors (food, weather, smells, tiredness, timing of our meds, immune system fluctuations and so forth) can bring on pains, "odd" feelings, and so forth.  Inflammation (which we can't see from even exercising or sleeping the wrong way) can put pressure on nerves anywhere within our bodies.  And because we have become hyper-sensitive to everything - it kicks in our mental awareness.  And because of that, the mental game begins.

If you have had your follow up catscans and they don't see any changes, it can help alleviate some of the anxiety that the pain can bring on.  The symptoms of anxiety can feel like you are "crashing" physically and it is really hard to talk yourself through it.  I can't say what you are feeling is coming from anxiety (weakness is one of the feelings), but I can only speak from my own physical reactions to pain that comes out of nowhere (post surgery) and it still comes on 6 years after.

It doesn't mean the pain doesn't exist.  Just cleaning my house can bring on issues 2 days after - just from maybe moving the wrong way.  And then this kicks in my anxiety feelings since I can't forget "what" I went through and "fear" of not surviving again, or having to go through it all again from the surgery to the recooping. 

Since my body has become so hyper sensitive to pain (and to so many other things), I even flinch when I see someone else get hurt.  The stress our bodies go through takes its toll on us mentally and in turn physically and our body forces us to slow down, to take it easy or get more sleep, better nutrition and so forth.

Like Kimberlee asked if there is something you can tie it to - that might bring it on?  the duration of what you experience could be anxiety induced as with each time - it just makes you more hyper aware.

If your tests come back "normal", then try to trust it for awhile.  With each year, even though you will never forget it all, hopefully the experiences will become farther apart.

The mental struggle we go through will never go away.  What we have will always be a part of us.  I'm sure cancer patients feel the same even if they are in remission or claimed to be "cancer free".  They had it, so it will always be there looming "will I get it again"  "what if it is somewhere else".

Eliminate the possibilities (through catscan and so forth) and after that, if all is clear, then read up on how to deal with anxiety and fear -- like biofeedback and so forth.

You are on alot of different meds too -- they all can have side effects --- that would be another area of research to check out - especially of you are on some type of cholesterol med.  Sometimes just switching to different brand could help.  I just know that muscle weakness is one of the side effects you are supposed to watch for from cholesterol lowering drugs.

Keep in touch!!!!! 

Everything you said makes sense. I know the pain is real because sometimes it happens while I'm asleep. It happens at different times of the day. You are rigth about not trusting the doctors. I do not. I try to figure it out in my own, or by sharing with all of you. I know my body very well and that keeps me aware of possible problems. I try not to think about the surgery too much, but when I do not feel well the memories come back.
Two things you said made perfect sense: effects of the medication and nerve damage done during the surgery. I have always been super sensitive to medication and up until now, all I have ever been able to handle is Tylenol. Unfortunately, now there is no option. In regards to nerve damage, although I work out regularly, I can feel the tension in my neck and back.

Thank you so much..

Maria T
  Have a pain that starts in my neck then progresses down one arm,lasts about 5-10 mins,then disappears, and starts down the other side,followed up with top surgeon in Mayo clinic and still have no answers. Best tretment I found was Accupuncture,this is after my Aoritc Arch replacement surgery,going on 5 years.

You mentioned Mayo Clinic -- are you in the MN area?  My surgery was done at Fairview Southdale in Edina - my surgeon has retired from surgery (was the top there 6 years ago) when I had my descending thoracic replaced.  I have also met with a surgeon at Abbott Northwestern and basically all they can do is monitor through catscan's, keep my BP down with meds and pretty much, the rest is up to me.  I know it is very frustrating, because the symptoms don't go completely away.  And since you had surgery already, I'm sure your rib cage etc., was opened to get to your aortic arch so you never know if it's your aorta having issues, your muscles, a pinched nerve, your chest cavity and so forth that could be causing any issues.

For me, I didn't have pain radiating down my arm, but I had more of an "antsy leg syndrome" feel radiating down my arms and it was pretty consistant (like labor pains) and didn't go away and kept me awake.

It was the catscan at the ER that showed a possible leak so they had to do surgery even though it wasn't like a "definite".

Have they done all the scans on you?  I was told the catscan shows the flow so if there was a leak, it should show up in the scan.

The nerve issue or muscle atrophy or spinal chord/rib cage is a difficult one since I don't think they have anything that can directly pinpoint the issue -- that is probably why accupuncture works best for you since it deals with the nerves.

I feel for you and understand your frustration.  I know alot of my discomfort comes from my ribs being removed as even eating too much feels like my stomach presses up on my sternum and then I feel pain throughout my left side and then once in awhile I'll get a twinge in my right side and that throws me off.

I have found that my body as a whole since my surgery has become extremely hyper sensitive to any pain --- I also have a harder time with caffeine, epinephrine (which is natural to our bodies, but I can't have it added like novacaine at the dentists).

Does your pain hit everyday out of the blue or can you pinpoint what might sets it off like sleeping a little off kilter?

Cher

 

My pain comes randomly,it is like someone just stabbed me in the shoulder then it feels as tho it is moving cusing me to stop and will myself to continue with what I'm doing. Yes c-scans every 6 months, which is getting old also. No it was a surgeon in Gainesville Fl. that did mine, the Mayo Clinic in Jacksonville Fl was the last place I went to hear,"Not sure but it may go away",which to me is unacceptable, but yes I live in constnt fear of the unknown.

I should have figured that there was more than one Mayo clinic in the country.  I understand the stabbing description.  I will feel mine mainly on the left side where the surgery was and especially in my rib cage.  It's enough to take your breath away.  Once it subsides, then I fear feeling it again.  Kind of like when my heart flips. 

I know the drs try to help with the knowledge they have, but I think they are still learning as they are faced with a situation.  I know they don't want to do surgery until it's absolutely necessary as the risks are high and the recovery is long.

It doesn't make sense, and if you are like me, I don't want to have to live on pain meds the rest of my life so we kind of suck it up and go on with our day the best we can.

It does make me less social in the sense of going out anywhere, unless someone is with me, and even then, it's uneasy.  I know I should not let it lead or control my life, but it is hard to ignore it as my AD/aneurysm reminds me everyday in its own way that it is there.

Along with that though, it reminds me to be thankful for the extra time I have gotten and hope for alot more time.  It has made me look at life differently even in between the pain instead of just going through the motions of everyday life --- it's made me very aware of every second of everyday life.

Cher

 

 

 

 

That ticking time bomb feeling, sad to say but I don't think that feeling ever goes away completely. I still think about it everyday, I'm just hoping that with time I will continue to think about it less and less. It's not so much the dissection they repaired but the aneurysm they have not repaired and the other things(enlarged aortic root and leaky aortic valve) I wish there was a way I can just take a quick peek inside me to check if everything is OK..it's the not knowing for 6m that drives me the craziest, then after my echo and ct I go about a week of feeling ok and not thinking about it too much then back to the ticking time bomb again.

*hugs*
Kimberlee
I just read what you said Kimberlee. I thought that the Ticking Time Bomb feelings were only me. I get it when i least expect it. I am not sleeping well at the moment. The worst part for me is being as i am number 6 on my dads family. The why am i alive when my dad is not. I am still scared i will get another aneurysm.

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