Not sure where to put this, can anyone help?

[Sarah_Louise]

Hi everyone,
Hope your well
This isn't really heart related but i was just wondering if anyone has ever been diagnosed with underdeveloped arteries in the leg?
I've been in hospital again for a few days with another suspected blood but after an angiogram they've said i've got a poor blood supply to my right leg and foot and my arteries are narrow probably down to them being underdeveloped from birth so was just wondering if anyone else has heard of this? Although don't know why its taken 17 years to present its self- i only started having problems with my legs last year when i needed the 2 embolectomies due to my aortic valve throwing clots and them staying in my legs?!? I was told if i was anyone else with JUST the narrowing/undevelopement they would have taken me to theatre to stretch them, but with me it would do me more harm than it would good :frown2: so i've just to get on with it, there's nothing they can do!
I seen 5 different doctors-2 of them consultants and it was as if they where reading from a script as they all said: "Your not our normal straight forward patient Sarah, you have very complex problems and are too complicated blah blah blah!" What good is that to me, yes i'm complicated but there the doctors, not me!
Anyway sorry for starting to rant lol,
Can anyone help me or no a website where i could go? (have googled but can't find much)
Thanks everyone
Sarah xxx

 

[Duffey]

I don't have any information on this, but I wanted to say that I hope you get an answer and maybe a link to some research.
In the meantime, take care!

 

[OldManEmu]

Sarah
Other than stating

you’re not our normal straight forward patient Sarah, you have very complex problems and are too complicated

Did they offer any suggestions for dealing with your issues or are they just saying in an indirect way, its all to "hard" for them, and don't want to know about it.
Generic statements about being a complicated patient with no further explanation are a waste of your time.
I know it is hard as a 17 year old but you or your parents need to push them to answer the questions why are they refusing to treat the blood vessels in your legs and what are the risks of following the normal course of treatment.

 

[Sarah_Louise]

Thanks Duffy!

Sarah
Other than stating
Did they offer any suggestions for dealing with your issues or are they just saying in an indirect way, its all to "hard" for them, and don't want to know about it.
Generic statements about being a complicated patient with no further explanation are a waste of your time.
I know it is hard as a 17 year old but you or your parents need to push them to answer the questions why are they refusing to treat the blood vessels in your legs and what are the risks of following the normal course of treatment.

Nope i was sent home yet again with no answers as i'm too hard for them to look after and they don't no what they can do to help me!
I've been seen at my local hospital and they gave me no answers, so my mam and dad toook me to a hospital thats 1 hour away to get a second opinion and got no answers there either (they said it was cardiac related & nothing to do with vascular!!) So we went to the hospital where my specialist is and I said to my cardiologist what i'd been told and he said IF it was cardiac it would have effected all four of my limbs not just my right leg & foot, he got the vascular doctors from that hospital to come and see me & arranged an appointment with the top vascular surgeon in the north of england and he carried out a duplex scan which revealed an abnormal reduced blood flow in my leg due to underdeveloped arteries! he said i was also getting intermittent vasospasms and the treatment of this for (que that word yet again) for 'normal' people would be vasodilators, but i couldn't have them due to my heart, so we'd just watch and wait! So that was like 4 different opinions i'd had,
So obviously my first point of contact this week was my local again but who else do i see and where else do i go? I've seen over 12 different doctors in 3 different vascular teams at 3 different hospital, 6 of them consultants and 4 of them surgeons?! and they all say i'm too complicated!
Sarah xxxxx