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Paralyzed after open heart surgery

  • 1.  Paralyzed after open heart surgery

    Posted 02-22-2021 17:52
    Mended Hearts Community,
    My wife (42yo) had heart valve repair surgery done over a month ago (19th of January 2021)
    The fairly straight forward and "routine operation "as the doctors called it  went as planned,
    as they were taking her to a room she had a heart attack, they revived her quickly but her heart was
    in a state of shock ( as they named it) and would not function so they put here on life support (ECLS) and in intensive care.

    A few days ago ( after 1 month on life support and in intensive care) her heart is better and
    can do without the machine so the doctors were down dosing the drugs so she can slowly wake up.

    Today the doctors  announced that she is paralyzed from the neck down and they don't know why?
    How could this happen?

    Did the doctors screw up and are covering it?
    If they did screw up they would know why and how it happened right?
    I have so many questions that they can not answer.

    So Im reaching out to anyone that can lead me to the answers and possible solutions on the internet.

    Could you please call your cardiac surgeon ( if you have one ) and ask if they have heard of this before.
    The doctors in the hospital have never seen or heard of this happening before.

    Please.... I have 3 children together with my wife and we all miss her sooo much.

    Or could  anyone please recommend some highly experienced heart surgeons to
    spread some light on what has happened and what should we do?

    I have full medical reports to send ,
    I don't know where to start or what to do...

    Thank you and God bless you all through these hard times.
    Jason

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    jason kefalas
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  • 2.  RE: Paralyzed after open heart surgery

    Posted 02-23-2021 06:22
    Jason,

    I was placed in a medically induced coma on a ventilator for two weeks after my open heart surgery after contracting pneumonia.  When I became fully conscious, a week after awakening, and was sent to an inpatient physical rehab facility, I realized that I could not lift my right arm higher than waist level, and that my hands and fingers of both hands would shake so badly, sort of like Parkinson's Syndrome, that it was almost impossible to feed myself.

    The cardiologist and internist at the rehab facility had never seen this before and believed it was caused by what they termed "hypoxia of unknown origin." They may not have known, but I quickly realized that the hypoxia (low oxygen level that can cause organ damage, including to the brain) likely was a result of either the surgery or the ventilator.

    In addition to cardiac rehab, my physical therapists started working with my nearly dead right arm and, gradually, I regained normal usage.  By the time I left rehab, 3 weeks later, I could lift my right arm sightly above my shoulder and, within another few weeks, I had full range of movement again.  Now, 3 years later, my right arm remains slightly weaker than my left arm but it's still strong enough to permit me to engage in strength training such as pullups.

    My hand and finger palsy gradually got better and went away entirely after a few weeks.  I believe that I cured this myself.  I literally was missing my mouth when I initially tried to feed myself.  Food was landing everywhere on the bed.  I found myself trying to really concentrate on moving the spoon to my mouth, but things got even worse.  At that point, I decided to try not thinking at all about the movement or the possibility that I would miss my mouth and it actually began to work.  In the end, I think that new neural pathways developed in my brain and restored normal use of my hands.

    Jason, I am not a doctor, and I have not undergone anything close to what your wife is undergoing, but what I did experience seems at least remotely similar.  I suggest that, rather than seeking answers from cardiologists who admit they never saw this before, you should immediately get a good neurologist involved.  As your wife is still in the hospital, this should be very easy for you to arrange.  In addition to the neurologist on staff at the hospital, who may be a little defensive on behalf of his hospital, I also recommend finding an outside neurologist to provide a second opinion consultation if necessary.

    What I'm trying to tell you and your wife is that you guys should not even think about giving up hope.  If this terrible thing that happened was a result of hypoxia, the human brain has remarkable ways of finding alternative pathways to restore bodily function.  This does not seem anything like, for example, a severed spinal cord from a car accident.  Get the best neurologist you can find and see what he or she can do for you guys.

    God bless the both of you and your family.  Please keep us posted.

    Ira

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    Ira Reid
    Hoboken NJ
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  • 3.  RE: Paralyzed after open heart surgery

    Posted 02-23-2021 09:32
    where do you live?
    My heart and empathy go out to you! especially since My husband and I had a similar experience 8 1/2 years ago.
    I had open heart mitrovalve repair. on the table after the repair but before closing the wound, i went into cardiogenic shock ( which caused internal organs to start to shut down) . My surgeon told my husband that in his 25 years of operating this was the first time it happened. its very rare!!! They put me in a medically induced coma, left my chest op for 10 days, before operating again to close up. ( and apparently i also had some mini strokes secondary to HITT, allergic reaction to Heparin). My life was saved by the nursing and medical skill ... 3 I V or more poles.
    (my husband and parents developed PTSD.) Then they woke me up. All this time not moving my body caused the muscles to weaken so much i couldn’t press the call button for help ( much less do any other activity). Gradually with appropriate physical, occupational, and cardiopulmonary therapy ( at a rehab for 3 weeks and at home for 2 months more). At first, i was very concerned that i was paralyzed too. ( as well as nightmares , depression and confused thinking).
    I am telling you my story not to frighten you but to encourage you to be patient. She may yet get better.
    Gather all the support you can from your community ... child care, meals, and prayers. Therapy , avoiding stress ( no bad news on tv, family arguments or political al debates near her) and lots of rest for her and you. Rest is “not doing nothing”, it is an act of letting her body and heart recover from this trauma. Art work from the children and photographs on her wall may help her feel better.
    The month in ICU will have caused much muscle deconditioning.
    Fortunately with all the therapy ,community support and prayers , I have had a full recovery. ( well not my typing and editing skills)

    My husband Minty says you are welcome to call him 214-850-0219 . He has some good ideas for you

    Marilyn B. Rosenhouse
    Mobile: (214)850-0655




  • 4.  RE: Paralyzed after open heart surgery

    Posted 02-24-2021 08:55
    So sorry for your distress. Marilyn gives wonderful  advice. In addition to local neurology consult, I recommend consult at Cleveland Clinic or Mayo. I now get long distance care from Cleveland helped by technology. These world centers are likely to know more about rarer complications.

    Sending hugs, prayers, and best wishes. Please stay in touch.


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    Doris Edwards
    Retired RN
    Dublin, Ohio
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  • 5.  RE: Paralyzed after open heart surgery

    Posted 02-24-2021 13:58
    Jason ~ I am deeply saddened by the news of your wife's unexpected setback. I can only imagine how emotionally devastating this situation is for your family and you.

    Open heart surgery of every genre has become so common place we tend to forget there are inherent risks every time we enter that surgical theater. I've known far too many, including family, who've gone in for a routine heart procedure and the results were unexpainably devastating.

    I can't offer any thoughts on the possible cause of your wife's paralysis nor the long term prognosis, however never give up hope that the situation will turn around and she will make a full recovery. Don't lose faith, miracles happen every day.

    Good luck to you all, we'll keep you in our thoughts and prayers.

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    Warren
    TucsonAZ
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  • 6.  RE: Paralyzed after open heart surgery

    Posted 03-02-2021 18:13
    Jason: pleaze keep is updated as your wife’s condition and how you are doing ? Sending you virtual hugs and prayers

    Marilyn B. Rosenhouse
    Mobile: (214)850-0655




  • 7.  RE: Paralyzed after open heart surgery

    Posted 03-02-2021 18:39

    Jason,
    I am incredibly sorry for what is happening. I hope you are getting some answers since you wrote.

    Best advice I have heard is:
    Reach out to Cleveland Clinic and Mayo
    Get an excellent Neurologist

    please keep us posted..
    I will be praying. ♥️


    Beth Moon 



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    Beth Moon
    OK
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  • 8.  RE: Paralyzed after open heart surgery

    Posted 03-04-2021 10:07

    Hello again and thank you all for your feedback, prayers and support. 

     

    Im sorry for the delay but im in state of shock and having a hard time 

    Communicating, everything you've all written  I forward to her sister and 

    Father who thank you all very much and look into the info and follow up. 

     

    How is she, 

    Her heart is better, they have only a heart pacer for back up 

    She is constantly bombarded with antibiotics because she gets a fever 

    Every night from infection and and she is really week. 

    The good thing is that she moved her fingers today so she is not paralyzed , 

    but she cant talk or communicate yet.

     

    Its just a matter of how long will these infections keep hassling her and giving here fevers, 

    the doctors say she has a 50% chance because she is really run down . 

     

    She is still in intensive care, its been more than 40 days now. 


    im sorry, im realy lost for words.

     

    Thanks again to all of you, 

    Ill keep your posted 

    Jason






  • 9.  RE: Paralyzed after open heart surgery

    Posted 03-05-2021 16:02
    Dear Jason: Please be patient! you probably hear this over and over! Count each improvement as a milestone. Moving her fingers is excellent Joyous news. I remember being so weak that i couldn't press the nurse call button. When she is ready, physical therapy in a facility ( be sure there is good food and some activities) is the best thing!
    Marilyn B. Rosenhouse
    Mobile: (214)850-0655




  • 10.  RE: Paralyzed after open heart surgery

    Posted 03-05-2021 16:17
    Marilyn is right...it's joyous news she can move her fingers. Deep breath. This will be slow and tedious. You've come through so much and I know you are exhausted. We're here for you and want you to keep up your strength.  We'll keep up our prayers for everyone.

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    Doris Edwards
    Retired RN
    Dublin, Ohio
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