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From: janers on 28 Nov 2007 14:58
Well this is a bummer, I got results of the CT angiogram and indeed there is blockage but they are
not sure blockage or narrowing of the major blood vessel. The head surgeon now has to do an
arteriogram and the other surgeon wants MY heart doc to do a heart cath to make sure the heart is ok
too.

They were suppose to set it all up MONDAY. Believe this NO one has called me and no one set up
nothing yet. I called them to remind them but zip. MY heart doc says COME into my office, I saw her
and she was the one started this testing. Why come in. Nurse says, well I am not sure, something
about talking to your surgeon. NOW what.
See the complicated mess this is.
THEY say it needs fixed, they say the right side is only supplying my brain, left vertebral is
backward flow due to blockage of the subclavian. they call it RARE. Like Shelagh WE must be RARE
together haha. a

so the wait is on and looks like a delay in our winter leave. I know patience is a virtue. I worry
it is going to get worse before they do something. But then again I told them about all the
symptoms in June, and now the symptoms are more so. DUH
Ever fold your clothes and feel like your arms are 1000 pounds and can't hold them up. Dizzy when
you bend over, feel gushing in the head and neck? Damn fun LOL sorry for the curse haha.

so keep the prayers a comeing and that is all I know right now. At least I am glad I got my holiday
shopping done, and hubby put up the tree.

hugs to all and to all a good night for my nap
janers


From: Shelagh on 28 Nov 2007 16:14
OK now Janers... it is time for you to be the squeaky wheel and BIG TIME noisy!!
Don't let them forget you or the procedures etc...
PHone and PHOne again and then PHONe some more!!!
until you are in and DONE and healthy and well again;
we all will keep our cheers and prayers coming !!....
BUT your job is for you
to PHONE those dam doctors until they DO SOMETHING for you !!!
OK?
hugs for you (((Janers)))
Shelagh
http://members.shaw.ca/tiderington

"janers" <rojakort(a)bright.net> wrote in message news:cYadne2WgcHIVdDanZ2dnUVZ_vyinZ2d(a)bright.net...
Well this is a bummer, I got results of the CT angiogram and indeed there is blockage but they are
not sure blockage or narrowing of the major blood vessel. The head surgeon now has to do an
arteriogram and the other surgeon wants MY heart doc to do a heart cath to make sure the heart is ok
too.

They were suppose to set it all up MONDAY. Believe this NO one has called me and no one set up
nothing yet. I called them to remind them but zip. MY heart doc says COME into my office, I saw her
and she was the one started this testing. Why come in. Nurse says, well I am not sure, something
about talking to your surgeon. NOW what.
See the complicated mess this is.
THEY say it needs fixed, they say the right side is only supplying my brain, left vertebral is
backward flow due to blockage of the subclavian. they call it RARE. Like Shelagh WE must be RARE
together haha. a

so the wait is on and looks like a delay in our winter leave. I know patience is a virtue. I worry
it is going to get worse before they do something. But then again I told them about all the
symptoms in June, and now the symptoms are more so. DUH
Ever fold your clothes and feel like your arms are 1000 pounds and can't hold them up. Dizzy when
you bend over, feel gushing in the head and neck? Damn fun LOL sorry for the curse haha.

so keep the prayers a comeing and that is all I know right now. At least I am glad I got my holiday
shopping done, and hubby put up the tree.

hugs to all and to all a good night for my nap
janers

From: zinn.46350 on 28 Nov 2007 18:24
On Nov 28, 1:58 pm, "janers" <rojak...(a)bright.net> wrote:
> Well this is a bummer, I got results of the CT angiogram and indeed there is blockage but they are
> not sure blockage or narrowing of the major blood vessel. The head surgeon now has to do an
> arteriogram and the other surgeon wants MY heart doc to do a heart cath to make sure the heart is ok
> too.
>
> They were suppose to set it all up MONDAY. Believe this NO one has called me and no one set up
> nothing yet. I called them to remind them but zip. MY heart doc says COME into my office, I saw her
> and she was the one started this testing. Why come in. Nurse says, well I am not sure, something
> about talking to your surgeon. NOW what.
> See the complicated mess this is.
> THEY say it needs fixed, they say the right side is only supplying my brain, left vertebral is
> backward flow due to blockage of the subclavian. they call it RARE. Like Shelagh WE must be RARE
> together haha. a
>
> so the wait is on and looks like a delay in our winter leave. I know patience is a virtue. I worry
> it is going to get worse before they do something. But then again I told them about all the
> symptoms in June, and now the symptoms are more so. DUH
> Ever fold your clothes and feel like your arms are 1000 pounds and can't hold them up. Dizzy when
> you bend over, feel gushing in the head and neck? Damn fun LOL sorry for the curse haha.
>
> so keep the prayers a comeing and that is all I know right now. At least I am glad I got my holiday
> shopping done, and hubby put up the tree.
>
> hugs to all and to all a good night for my nap
> janers

wow, Some big things happening, I still do not have much input of
Lupus even though I have it :(

You will probably feel best with the doctor you trust. As far as them
remembering you and to call etc, I am a bit skeptical on that one, an
ENT told me 9 weeks ago on a Tuesday that he would call me on Thursday
with a testing schedule, well, not only am I still waiting, I have
been to another doctor and tests were done and read.

So then, Lupus can cause the heavy arms? I'll bet it also is cause for
extream exhausted feeling too.

Be safe, I am glad you have a friend to be 'rare' with, its nice to
have someone who knows how it all feels.
Prayers for sure.
Zinn
From: janers on 28 Nov 2007 23:00
Me again.
No lupus is not causing the heavy arms the circulation problem I have or blockage or stenosis is
causing it, says the heart surgeon.
the name of the "thing" I apparantly got is subclavian steal syndrome and it is rare.

I did get a call from the surgeon this afternoon late, and I see HIM and my heart doc both Monday. I
told them enough of this stuff. I AM THE PATIENT and I SHOULD NOT have to be the one on the phone
doing all the inbetween stuff. They know I am angry. so meeting it set for MONDAY after lunch and
then the surgeon is going to discuss what HE is going to do to correct this. Plus the heart doc may
not decide to DO a cardiac cath.

whether this is lupus related is beyond me. It maybe due to athlerosclerosis of the vessels or what
ever. I used to be a heavy smoker as well but NO SMOKEY now since March of 02 so that is good.

I did what you said Shelagh and phoned and phoned. To the point today that when they called me and
didn't know I was to see the heart doc, well that made me vocal and told them like what I wrote
above. I AM THE PATIENT. See what happens when they take being an RN for granted. haha.

MORE next time. Thanks for the prayers but keep them a rolling.

the symptoms of this is LOW bp in the one arm compared to the other. mine is 30 or 40 point
different. changes in vision a lot, dizzyness, fainting feeling, heavyness of arms and weakness.
Headaches, and what not.

thanks again
me in limbo


From: Beverley on 28 Nov 2007 23:46
Well, that sucks, but at least they are catching it and are planning to do
something!
(((HUGS)))
Bev


"janers" <rojakort(a)bright.net> wrote in message
news:UqidnUVzDI_opNPanZ2dnUVZ_o6knZ2d(a)bright.net...
> Me again.
> No lupus is not causing the heavy arms the circulation problem I have or
blockage or stenosis is
> causing it, says the heart surgeon.
> the name of the "thing" I apparantly got is subclavian steal syndrome and
it is rare.
>
> I did get a call from the surgeon this afternoon late, and I see HIM and
my heart doc both Monday. I
> told them enough of this stuff. I AM THE PATIENT and I SHOULD NOT have to
be the one on the phone
> doing all the inbetween stuff. They know I am angry. so meeting it set
for MONDAY after lunch and
> then the surgeon is going to discuss what HE is going to do to correct
this. Plus the heart doc may
> not decide to DO a cardiac cath.
>
> whether this is lupus related is beyond me. It maybe due to
athlerosclerosis of the vessels or what
> ever. I used to be a heavy smoker as well but NO SMOKEY now since March of
02 so that is good.
>
> I did what you said Shelagh and phoned and phoned. To the point today
that when they called me and
> didn't know I was to see the heart doc, well that made me vocal and told
them like what I wrote
> above. I AM THE PATIENT. See what happens when they take being an RN for
granted. haha.
>
> MORE next time. Thanks for the prayers but keep them a rolling.
>
> the symptoms of this is LOW bp in the one arm compared to the other. mine
is 30 or 40 point
> different. changes in vision a lot, dizzyness, fainting feeling, heavyness
of arms and weakness.
> Headaches, and what not.
>
> thanks again
> me in limbo
>
>


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