Please help me. I am so frustrated. My
doctors are contradicting each other and I
don’t feel they are doing the right
tests in a timely manner. I need to find
a vascular abnormalities specialist who
can review the tests that have been done
and communicate with my doctors in order
to figure out what needs to be done next.
There is a very long list of symptoms
including progressively worsening severe
migraines from childhood, chronic
“strangling” attacks with chest pains,
coughing and strange thumping in my
chest…. I believe that I have some sort
of vascular abnormality that may be
hereditary from my father and his
mother…could it be hht? Or just an avm?
I have many new telangiestasias appearing
in places like my feet and face just in
the last year and I am only 35. I’ve
had them on my lips since I was a little
girl. I am also bleeding chronically in
my stomach or duodenum….
I have migraines literally EVERY DAY. I
take Imitrex for them DAILY. That may be
causing coronary vasospasms…or that is
just another symptom of the possible AVM.
Don’t feel like anybody is listening or
taking me seriously. They would just
rather give me drugs and send me
away…and I have tried them all.
Seriously. You name it, I’ve taken it
and they may have caused other problems,
just further complicating the issue. They
never help and are probably shortening my
lifespan. I just want to fix this darned
thing.
I am an intelligent, talented person who
longs to be a functioning member of
society and am unwilling to accept that
there is nothing I can do but waste away
on disability and in constant pain. I
want a job, to get my master’s degree, a
husband and to be a mother. I can’t do
this in my condition. My quality of life
is almost unbearable. I am now taking
antidepressants because of the emotional
problems and depression that 35 years of
pain has caused me…and I feel very
isolated because I can’t be around
people and noise and chaos or drive or
have any direct sunlight…. And the pain
has gotten so much worse in the last few
years. The scary and intense attacks that
land me in the hospital cause neurological
problems like tremors, short-term memory
loss and problems with numbers and simple
geometry (things I was always very good
at.) I now have these very strange
sensations in my chest as well that
coincide with the visual disturbances and
ringing in my ears that happen at the
beginning of a new migraine. The vascular
craziness makes me very winded and dizzy
sometimes when I’m not even doing
anything physical. And the chest pains
are gradually getting more severe and
frequent. There is so much more, too much
to share here.
My neurologist found a large left-right
shunt using the Doppler Bubble Study. I
did not have to bear down for the test
because of it’s size. (That is what the
tech said.) The cardiologist did not see
a PFO in the Transesophogeal ultrasound of
my heart. He performed the Bubble test
again while I was under and it again came
up positive for a large left-right shunt.
The neurologist said I had a PAVM and he
ordered a regular CT with no contrast.
(This is taking forever…months. It’s
been since the beginning of February when
I first started seeing him and am still no
closer to finding answers.) He finally
ordered a multiplanar CT with contrast of
my chest. This came up negative (but I
learned in research that this test
doesn’t show every part of the lungs and
may not show a complex AVM). There have
never been any tests using contrast, not
even of my brain. He said he was confused
(which is what the cardiologist and my pcp
said as well) and the two positive bubble
tests must just be flukes…and it isn’t
important and it is probably nothing.
I asked him to send me to specialist, but
he said he is the specialist. But I am no
dummy and I know that a neurologist is not
a specialist in vascular abnormalities and
that contrast is necessary to see the
vascular structure. I don’t understand
why he has never used any contrast before
the Chest CT, especially in my brain.
This is a problem I have had since
infancy. If there is a possibility I have
a congenital defect, shouldn’t he look a
little deeper? Especially since I can’t
do any normal people things, let alone
have a pain free day. Now he’s telling
me that I have moderate arthritis in my
neck and low back from scoliosis and three
of the disks are bulging without any
fluid…which explains the sever pain in
my neck and back…just another one of my
many pain sources. This just means more
pain that will continue to progress as I
age. At some point there has to be less
pain. I can’t look at my future that
way…as just getting more painful with
nothing I can do about any of it EVER.
I really feel like he is wrong about the
shunt being unimportant. I feel that he
really doesn’t know as much as he thinks
he does. Nice guy, but he’s not giving
me what I need. I’m doing my own
research and most vascular abnormalities
specialists focus on skin and children.
Nothing for adults and PAVM’s in
Southern California, or in Washington
State where I will be moving in November.
Can anyone direct me to someone who can
take a look at my case and consult with my
doctors to figure out what to do next? I
am absolutely desperate and am suffering
severely. Please help me, somebody.
Thank you for reading through this long,
long message. I really appreciate your
time and attention.
