coarctation of aorta

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Hi, i was diagnosed very late with this condition. An acute GP noticed the murmer and was not convinced that all was normal. Test after test later it was confirmed. Months later i had a stent fitted which is 4cm x 2cm, I was not warned about the amount of brusing or the pain in the legs, 4 months later i am still having pain in the groin and the che chest. The cardiologist does not know why I have this pain that travels from my chest to my back and laft arm. MY left leg feels heavy and numb down to the foot which is freezing cold at times again. I have started feeling tired and fed up with the whol ordeal. Yes i know i needed this procedure but through choice i would never have had it - my active happy go lucky life style now revolves around this. When i get ill My poor GP has to send me in to the hospital as they are not well versed with this condition. Can any one tell me when will I feel well and strong again. Do you get back to normal? The hospital and the doctors have been wonderful but they just do not have the answers. They think it could be damage due to the surgery but not lifr threatening so at least that is something to be cheerful about. I would love to hear from other people that have undergone similar treatment.

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  • Posted

    sorry to hear about your painful experience

    I have no experience to share but my son had a coarctation at 10 days old

    we were always told he would have a stent fitted at 12 and maybe at 18 as well. Now 11 years old and the doctor wants him to take blood pressure drugs instead. were you offered drugs as well or instead of surgery?

    I am still trying to process all the new information and would love to hear from anyone with childhood or childrens experience of the drugs or the stent procedure

    thankyou

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  • Posted

    Hi

    I am a 45 year old male who was born with a coarctation at the age of six weeks i had open chest surgery where a graft was placed to open the narrowing in my aorta. This was done again when i reached 7 years old, and I carried on with a very active youths life until at the age of 21 I had a bike accidednt where they found I hade raised BP.I then went into have my third bought of surgery where I had a asending to desending aortic bypass.

    Fast foward twenty years on a routine medical at work ( Im a police firearms officer) My blood pressure was raised. I went to see my GP who refered me to my local Cardiologist who after a very through medical put me on BP tablets (100mg Larsartin.) I now have regular check ups and still live a very active life.

    Yes after my last operation I was very down and had pain for a time in my chest, but all that is past me now.The last procedure i had is not done any more as stents seem to be the modern thing.

    In answer to your questions yes you do get to feel better and like me you may have to accept a life time on BP tablets . talking to my Doctor about stents they can now be done via veins in your groin so unlike me the problems with old scar tissue will no be present.

    I hope this is of help all the best Henry

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    • Posted

      Hi Henry, My name is Ange I had Coarctation repair with graft at age 14 when it was detected. I am now 42yrs and have good health, lead an active life in sport and have three children. I was very happy to read your post as I recently had a check up and it showed some widening at the site of repair (small aneurysm). All other check ups to now have been uneventful and I have never taken any blood pressure medication. This was a bit of a shock and I have searched for people in similar situations as myself since. A little concerned about prognosis as my children are still young. Good to hear about others in similar situations and at similar age to myself having had graft repair etc.

      Thank you

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  • Posted

    [quote:e7a18e3571=\"HENRY274\"]Hi

    I am a 45 year old male who was born with a coarctation at the age of six weeks i had open chest surgery where a graft was placed to open the narrowing in my aorta. This was done again when i reached 7 years old, and I carried on with a very active youths life until at the age of 21 I had a bike accidednt where they found I hade raised BP.I then went into have my third bought of surgery where I had a asending to desending aortic bypass.

    Fast foward twenty years on a routine medical at work ( Im a police firearms officer) My blood pressure was raised. I went to see my GP who refered me to my local Cardiologist who after a very through medical put me on BP tablets (100mg Larsartin.) I now have regular check ups and still live a very active life.

    Yes after my last operation I was very down and had pain for a time in my chest, but all that is past me now.The last procedure i had is not done any more as stents seem to be the modern thing.

    In answer to your questions yes you do get to feel better and like me you may have to accept a life time on BP tablets . talking to my Doctor about stents they can now be done via veins in your groin so unlike me the problems with old scar tissue will no be present.

    I hope this is of help all the best Henry[/quote:e7a18e3571] :cry:

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  • Posted

    Hi, I am so Sorry I have just received an email regarding a new message and never knew about the replies you have kindly sent, Thank you.

    I hope you are all well? I am feeling much better now, although it did take a long time and still at times have pain but as its not constant I can manage it. I am not on any BP medications and never have been offered or taken it, my BP is ok. It was different in each arm before the op that's allxx

    Like to know how your are all now.

    Thanks

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