P
pipersmith
I haven't checked-in in a bit. I would like to share what has been going on in the hopes that everyone (someone else) will really see - what you all have said all along - get another opinion and listen to your gut feelings!!!
I was diagnosed with aortic insufficiency in July. Nothing at all is wrong with my valve - it is just leaking. I have had no/little pulse in my left arm with very low blood pressure in that arm, and severe dizziness and vision disturbances, and a few instances consistent with a TIA. My cardio disounted the blood pressure variances - "that happens with insufficiency." I asked so many times "why when my heart function is normal (EJ and LVF, etc). He continued to ignore my questions. Though my gut kept telling me I had a secondary issue - I liked him and trusted him and just accepted his answers. Some of you may remember that I have asked extensively about these issues in here (blood pressure, neck pain, vision disturbances).
Sunday, I passed out and had what seemed to be a seizure. Thank goodness for an awesome ER doc. He admitted me saying I should not be living with these issues - I would not leave the hospital without some answers. I spent 2 days in our local hospital - many tests until they finally realized that ALL of the large vessels in my chest (going to my arm and head) are stenosed - some almost completely blocked. I was sent to a larger hospital (Vanderbilt) where they did extensive tests (and LISTENED extensively) and I was diagnosed with Takayasu's Arteritis. They started me on steriods and I am feeling better. I have much to learn and issues to deal with - but I am feeling so optimistic and I am at least treating the correct condition now.
I was scheduled to have a tubal on Thursday (that I did not need and could have been dangerous). My blood pressure in my arms has been really low, and the blood pressure in my legs crazy high. After the tubal - the surgeon was planning to schedule a Cath and then an aortic valve replacement surgery. Hopefully, the cath would have discovered the blockages, however they are not near my heart - so that may be a slim possibility.
Here is my point - the valve problem was a symptom - not a diagnosis. My cardio found the first problem, assumed that it was the answer and stopped looking, even though there were MANY signs. For instance, the doc that did my TEE said "look for blockages in the upper chest" mentioned "subclavian steal" - so they did an MRI that only went as high as the arch of my aorta. If they had followed his advice - they would have found the blockages. I asked him pointed questions on every visit (thanks ENTIRELY to this site!!) and he assumed that I didn't really know - he was the doc. I will admit that this is in hindsight - and I really did trust him. I SHOULD have taken the initiative to find another opinion, as many have said before. My diagnosis is rare, I do not expect that the first person to look at me would have found it - I do expect that doctors should do more than scratch the surface. I came dangerously close to having several procedures that I DON'T need.
I am not whining - I hope it does not appear so. I think that events conspired to put me exactly where I needed to be. I am lucky, I have EXCELLENT care. This came together like a puzzle. I just want to stress that you should research AS MUCH AS POSSIBLE so that you can be as informed as possible, ask questions, seek additional input - even if you are happy with your doc, follow your instincts. I was not being a hypocondriac - I was sick. I knew my body - and I let it go when I should have pushed harder.
These answers may not be for everyone's issues - but in the case that they may apply: (You never know)
the neck pain that I complained about was from the blockages of the arteries in my neck.
the vision issues were from a lack of blood and possibly some vessel issues in my eyes themselves (still to be determined)
the artery going to my left arm was almost completely blocked (+90%). To the point that my body formed another vessel to feed my arm. That was why no one could find a blood pressure or a pulse.
The best news is - if the steriods continue to decrease the inflammation (Takayasu's is an auto immune disease). Then I should not need to have the valve replaced - certainly not in the near future!!!
And - if anyone is considering Vanderbilt - THEY ARE AWESOME!!!
My last question is - since I likely will not need a valve replacement - can I still hang around here - I LOVE YOU GUYS!!!!! (it is still leaking
)
I was diagnosed with aortic insufficiency in July. Nothing at all is wrong with my valve - it is just leaking. I have had no/little pulse in my left arm with very low blood pressure in that arm, and severe dizziness and vision disturbances, and a few instances consistent with a TIA. My cardio disounted the blood pressure variances - "that happens with insufficiency." I asked so many times "why when my heart function is normal (EJ and LVF, etc). He continued to ignore my questions. Though my gut kept telling me I had a secondary issue - I liked him and trusted him and just accepted his answers. Some of you may remember that I have asked extensively about these issues in here (blood pressure, neck pain, vision disturbances).
Sunday, I passed out and had what seemed to be a seizure. Thank goodness for an awesome ER doc. He admitted me saying I should not be living with these issues - I would not leave the hospital without some answers. I spent 2 days in our local hospital - many tests until they finally realized that ALL of the large vessels in my chest (going to my arm and head) are stenosed - some almost completely blocked. I was sent to a larger hospital (Vanderbilt) where they did extensive tests (and LISTENED extensively) and I was diagnosed with Takayasu's Arteritis. They started me on steriods and I am feeling better. I have much to learn and issues to deal with - but I am feeling so optimistic and I am at least treating the correct condition now.
I was scheduled to have a tubal on Thursday (that I did not need and could have been dangerous). My blood pressure in my arms has been really low, and the blood pressure in my legs crazy high. After the tubal - the surgeon was planning to schedule a Cath and then an aortic valve replacement surgery. Hopefully, the cath would have discovered the blockages, however they are not near my heart - so that may be a slim possibility.
Here is my point - the valve problem was a symptom - not a diagnosis. My cardio found the first problem, assumed that it was the answer and stopped looking, even though there were MANY signs. For instance, the doc that did my TEE said "look for blockages in the upper chest" mentioned "subclavian steal" - so they did an MRI that only went as high as the arch of my aorta. If they had followed his advice - they would have found the blockages. I asked him pointed questions on every visit (thanks ENTIRELY to this site!!) and he assumed that I didn't really know - he was the doc. I will admit that this is in hindsight - and I really did trust him. I SHOULD have taken the initiative to find another opinion, as many have said before. My diagnosis is rare, I do not expect that the first person to look at me would have found it - I do expect that doctors should do more than scratch the surface. I came dangerously close to having several procedures that I DON'T need.
I am not whining - I hope it does not appear so. I think that events conspired to put me exactly where I needed to be. I am lucky, I have EXCELLENT care. This came together like a puzzle. I just want to stress that you should research AS MUCH AS POSSIBLE so that you can be as informed as possible, ask questions, seek additional input - even if you are happy with your doc, follow your instincts. I was not being a hypocondriac - I was sick. I knew my body - and I let it go when I should have pushed harder.
These answers may not be for everyone's issues - but in the case that they may apply: (You never know)
the neck pain that I complained about was from the blockages of the arteries in my neck.
the vision issues were from a lack of blood and possibly some vessel issues in my eyes themselves (still to be determined)
the artery going to my left arm was almost completely blocked (+90%). To the point that my body formed another vessel to feed my arm. That was why no one could find a blood pressure or a pulse.
The best news is - if the steriods continue to decrease the inflammation (Takayasu's is an auto immune disease). Then I should not need to have the valve replaced - certainly not in the near future!!!
And - if anyone is considering Vanderbilt - THEY ARE AWESOME!!!
My last question is - since I likely will not need a valve replacement - can I still hang around here - I LOVE YOU GUYS!!!!! (it is still leaking
)
