5 and half years On my on-x valve

[extraordinary]

hello ,
if any one had read my past posts I'm 30 years old women with a CHD and 3 open heart surgery last one I had my mechanical valve on April 2014 when I was 24 and ever since I was feeling much pain and so many side effects that I haven't exprienced my whole life been going from doctor to another no one could figure it out it was un bareable pain so at last finally I saw a new heart doctor described what im feeling and my symptoms he suggested to have a CT SCAN and what they figure out that on my last surgery when they had the AVR they as well closed a whole they find or something and doing that it caused a blockage to one of my heart artery which explained why im feeling they way I do I was feeling so frustrated at everybody the people who did my surgery as well my heart doctor that never took my complains as a seroise thing .. this doctor now will go on and do a Cath on TUESDAY to get a better picture of the artery which is narrowed due to a pressure cause by the last surgery ...
any one please with a similar story. ?
r

 

[pellicle]

No, nothing similar, but that sure sounds frustrating.

I hope a good resolution is found.
Best Wishes

 

[Warrick]

I sincerly hope they can repair whats been mucked up and theres no lasting damage.

An aquaintance had AVR and an aneurysm repair with a dacron wrap for BAVD and the surgeon didnt look at his CT scan.

This inadvertently resulted in what I understood was one of his coronary arteries being blocked by the wrap which starved his heart muscle.
He had a heart transplant 12 months ago.

 

[Duffey]

Best wishes and good luck getting some answers after the Cath. Please update us with what you learn; it might help someone else later on in a similar situation.

 

[Astro]

Best wishes extraordinary. Glad to hear that it is finally being treated seriously.
Good luck

 

[extraordinary]

hello,
im done with my Cath and it appears CT false alert all arteries are good which is a good thing but the bad news is it means we are still back at number one no one knows. still what is my diagnoses since my last surgery im have symptoms that's affecting my life and no one knows what it really is..
no one here experienced chest, shoulder even lower back sudden pain after an AVR ? last time my chest pain felt like a mini heart attack ,... I hate what im going through im only 30 years old and been in this torture for the past 5 years of my life

 

[Duffey]

So sorry that you still have no answers.

 

[mina]

This is going to sound terribly elementary - so much so that it may be offensive - but that's not at all the intent. It's just to pass along my own experience.

Since AVR I often get extreme gas pain. It's transferred pain or whatever it's called - it often happens in my left shoulder, sometimes my lower back, sometimes my chest, once in a great while more like in my upper leg. Simethicone (gas-x in the US) often helps, but sometimes just dulls the pain instead of eliminating it. I'm the only person I know who gets gas pain in these places. It can actually be pretty debilitating, and it's frequent. It sounds ridiculous, but that's my experience. I have no idea if it's related to the AVR. I just know it's annoying and unusual, but it's also not serious (I don't think).

I hope your situation is worked out soon. What you're describing is no way to live.

 

[Protimenow]

I'm not an M.D. I'm not a diagnostician. My thoughts are purely speculation.

Have you mentioned these pains to your primary or cardiologist? When they opened your chest, things may have moved around a bit.

Have you had an MRI to examine what's going on in your stomach? Is it possible that you've developed a hernia? Is it possible that your stomach may have gotten twisted or is in a position where it's not working efficiently? Has a change in diet been of any benefit?

I rarely get the pains you mention -- sometimes in left chest, sometimes in right chest, sometimes closer to the shoulder. For me, drinking a quart of water usually puts the pain out, because acids (or whatever are causing the discomfort) are diluted and washed down. It sounds like what you get is much more severe and frequent than what I rarely experience.

I hope that your doctors quickly get to the bottom of this (no pun even attempted at here), and resolve your problem quickly, easily, and for the rest of your life. (And I'm very interested in what, if anything, they find).

 

[dornole]

Focusing on the heart may be keeping docs from finding a true cause? Maybe go to your primary care doc and start fresh with your symptoms their frequency and severity, how they impact your functioning.

 

[vitdoc]

Not to disparage medical treatment in Kuwait were I assume you are being seen but since you are not getting better maybe getting another opinion about your medical situation elsewhere would be the best option. Europe or the US might be the way to go.

 

[extraordinary]

No, nothing similar, but that sure sounds frustrating.

I hope a good resolution is found.
Best Wishes

thank you I hope that as well

 

[extraordinary]

This is going to sound terribly elementary - so much so that it may be offensive - but that's not at all the intent. It's just to pass along my own experience.

Since AVR I often get extreme gas pain. It's transferred pain or whatever it's called - it often happens in my left shoulder, sometimes my lower back, sometimes my chest, once in a great while more like in my upper leg. Simethicone (gas-x in the US) often helps, but sometimes just dulls the pain instead of eliminating it. I'm the only person I know who gets gas pain in these places. It can actually be pretty debilitating, and it's frequent. It sounds ridiculous, but that's my experience. I have no idea if it's related to the AVR. I just know it's annoying and unusual, but it's also not serious (I don't think).

I hope your situation is worked out soon. What you're describing is no way to live.

but how severe and how you can describe the pain my pain is so intense it makes me cry sometimes and it feels like stabbing I don't know how it feels actually because no other pain is similar to it..

 

[extraordinary]

hel

I'm not an M.D. I'm not a diagnostician. My thoughts are purely speculation.

Have you mentioned these pains to your primary or cardiologist? When they opened your chest, things may have moved around a bit.

Have you had an MRI to examine what's going on in your stomach? Is it possible that you've developed a hernia? Is it possible that your stomach may have gotten twisted or is in a position where it's not working efficiently? Has a change in diet been of any benefit?

I rarely get the pains you mention -- sometimes in left chest, sometimes in right chest, sometimes closer to the shoulder. For me, drinking a quart of water usually puts the pain out, because acids (or whatever are causing the discomfort) are diluted and washed down. It sounds like what you get is much more severe and frequent than what I rarely experience.

I hope that your doctors quickly get to the bottom of this (no pun even attempted at here), and resolve your problem quickly, easily, and for the rest of your life. (And I'm very interested in what, if anything, they find).

hello,
thanks for you kind words you can;'t imagine how many doctor I've been to in this past 5 years to figure out what is going on but everyone failed of solving the mystery I had an MRI TO MY BRAIN BUT NOT TO My stomach cuz none of the doctors I've been to asked for that but im gonna mention it to them, I tried going to neurologist , eye doctor, general doctor, heart doctor, nose ears doctor every thing still not found the answer hopefully everything will be solved out soon thank you

 

[extraordinary]

Focusing on the heart may be keeping docs from finding a true cause? Maybe go to your primary care doc and start fresh with your symptoms their frequency and severity, how they impact your functioning.

hello,
you can;'t imagine how many doctor I've been to in this past 5 years to figure out what is going on but everyone failed of solving the mystery I tried going to neurologist , eye doctor, general doctor, heart doctor, nose ears doctor every thing still not found the answer hopefully everything will be solved out soon thank you

 

[extraordinary]

Not to disparage medical treatment in Kuwait were I assume you are being seen but since you are not getting better maybe getting another opinion about your medical situation elsewhere would be the best option. Europe or the US might be the way to go.

well I am putting this into consideration

 

[Debster]

Do you have your gallbladder? Sometimes gallbladder pain is felt in the shoulder. It also can come and go with no rhyme or reason. And it can be bad-in many people they think they are having a heart attack...

 

[mina]

but how severe and how you can describe the pain my pain is so intense it makes me cry sometimes and it feels like stabbing I don't know how it feels actually because no other pain is similar to it..

Well, it's pretty severe. I can't do anything else while I'm experiencing it. None of us who have offered advice are doctors (I don't think), but it sounds like your recent tests ruled out heart related things so maybe start looking into stomach and gallbladder issues. At least two posters have had what sounds like may be similar pain and it's been due to stomach issues/acid reflux. I myself have gastroesophageal reflux disease, diagnosed by endoscopy a few years before heart surgery, but the referred pain symptoms became much worse after surgery (I actually don't think I had the severe pain before surgery, but I had other symptoms).

Best of luck! It's beyond frustrating to live with constant or frequent pain.

 

[carolinemc]

hello,
im done with my Cath and it appears CT false alert all arteries are good which is a good thing but the bad news is it means we are still back at number one no one knows. still what is my diagnoses since my last surgery im have symptoms that's affecting my life and no one knows what it really is..
no one here experienced chest, shoulder even lower back sudden pain after an AVR ? last time my chest pain felt like a mini heart attack ,... I hate what im going through im only 30 years old and been in this torture for the past 5 years of my life

Could be anxiety? Have that checked out. Does not mean you are crazy or anything. it happened with cardiac patients. Not that you are trying to get attention, just that there might by some mental issued tied to your heart issues that you have dealt with the past several years. It happens, tension and anxiety. Not all in your head. Good luck in illuminating everything first.

 

[extraordinary]

AN LATE UPDATE I've done the the Cath there was nothing wrong it any of my artery which is good but at the same time annoyed that I still nor does anybody knows what's wrong with me been gone to every kind of doctor not just the cardio and everything is ruled out nobody found out what is the reason of what im going through the cardio gave me those nitroderm tts patched to stick them on my chest when I feel any shoulder or chest pain ( and I do use them and they help sometimes my pain to stop faster ) for those who doesn't know since my last AVR SURGERY IN 2014 I started suffering from out of no where sudden pain in chest, or arms or back pain that is feels so hard to explain like no other pain I experienced before plus sometimes as well out of no where I have blurry vision with numbness in any mouth . honestly I started to accept my pain and live with it ( even so it's so hard ) but what to do been to everykind of doctor ( checked on the nerves , the blood , the eyes ears everything you can thing of I get it checked ) its disappointing