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shazam
New User, Becoming EHEALTHy
Joined: 14 Jun 2007
Posts: 7
Location: FL
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Nutcracker Syndrome
Posted: 06-14-07 15:46pm
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Hi -- has anyone out there been treated
for this. I have had this condition for 5
years (gross hematuria every time I pee!).
My doctor has never seen a case of this
before and I have contacted numerous
nephrologists and medical institutions for
more guidance -- but to no avail. I just
think we might be handling this too
conservativley....I have also been treated
for anemia and the doctor has me do labs
(24 hour urine clooections, blood work)
every three months to keep an eye on
things...
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aflsh
Moderator
Joined: 26 May 2007
Posts: 541
Location: Souris, MB Canada
Thanks: 29
Thanked:19
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Posted: 06-14-07 22:07pm
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Hi
have you checked this out on the internet.
This might give you some questions to
take to your Dr. next time you go. I'm
afraid I have no personal experience with
this. Hopefully someone will add
something that will be more help. I wish
you the best.
answers.com/topic/nutcracker-syndrome
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shazam
New User, Becoming EHEALTHy
Joined: 14 Jun 2007
Posts: 7
Location: FL
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Posted: 06-15-07 12:35pm
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thanks -- i have done a lot research on
it, but it doesn't seem that many doctors
around the country have even seen an
actual patient with it. That's the
dilemma...the info is out there, but who
are the doctors that have actually treated
real live patients??? thanks again....
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aflsh
Moderator
Joined: 26 May 2007
Posts: 541
Location: Souris, MB Canada
Thanks: 29
Thanked:19
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Posted: 06-15-07 14:58pm
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I hear yuh. beleive me I understand that.
Different cause, but I have a kidney that
does not function. (many tests to confirm
this). Now this kidney has lots of cysts
on it. But every time I go to the Dr.
they just tell me that there is nothing
they can do. Blood tests every 3 months.
I hope you find someone that can help.
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momoftiff
New User, Becoming EHEALTHy
Joined: 17 Jun 2007
Posts: 2
Location: florida
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Nutcracker
Posted: 06-17-07 20:00pm
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my daughter has been dealing with this for
4 years now She had a autotransplant of
her left kidney 1 1/2 years ago. it has
seemed to help a great deal the pain was
greatly reduced and ntil recently no
hematuria. but that seems to be changing .
anyone else with any more info please help
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shazam
New User, Becoming EHEALTHy
Joined: 14 Jun 2007
Posts: 7
Location: FL
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Re: Nutcracker
Posted: 06-19-07 06:31am
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I have been hearing that it effects kids
and there seems to be more drs that treat
them rather than adults. i breifly spoke
to one interventional radiologist who
mentioned the autotransplantation of the
kidney -- but my symptoms are no pain just
hematuria all the time and from what you
wrote the hematuria hasn't necessarily
stopped with the surgery, right?
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shazam
New User, Becoming EHEALTHy
Joined: 14 Jun 2007
Posts: 7
Location: FL
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Posted: 06-19-07 06:34am
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| aflsh
wrote: | | I hear yuh. beleive me I
understand that. Different cause, but I
have a kidney that does not function.
(many tests to confirm this). Now this
kidney has lots of cysts on it. But every
time I go to the Dr. they just tell me
that there is nothing they can do. Blood
tests every 3 months. I hope you find
someone that can
help. |
wow i hope you get some answers soon, that
is frustrating....best of luck to you!
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momoftiff
New User, Becoming EHEALTHy
Joined: 17 Jun 2007
Posts: 2
Location: florida
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Nutcracker
Posted: 06-19-07 21:21pm
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She has only had hematuria afew times in
the past year and a half but her pain has
not subsided it has lessened greatly but
it is still bothersome.
i'm not sure i have heard of true
nutcracker without pain pain is usually
associated because of the varicosed
kidney. the pain is what lead us to the
drastic surgery. I saw you were in florida
we are in tampa. One of my newest and
biggest fears is that she will be having
to get her own ins. in the next few years
and will she be insurable?????????
Mom of tiff
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shazam
New User, Becoming EHEALTHy
Joined: 14 Jun 2007
Posts: 7
Location: FL
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Posted: 06-20-07 16:24pm
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momoftif -- i have a suggestion, i have
heard of a case where an accountant was
able to set up a corporation (like you
would be the president and the kids were
employees) and the corporation got
insurance for all the employees -- so
everyone could be insured whether they had
a pre-existing condition or not.
Obviously, you will have difficulty
getting insurance for her on an individual
basis. get a good accountant and see what
can be done. I wish you the best with
that.
Thanks for the other info too. btw its
weird that i have no pain, although i did
when i first discovered the hematuria (but
i was seven month pregnant at the time and
the pain subsided after a several-day stay
in the hospital). strange....
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aflsh
Moderator
Joined: 26 May 2007
Posts: 541
Location: Souris, MB Canada
Thanks: 29
Thanked:19
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Posted: 06-21-07 11:36am
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Did you have preeclampsia or high blood
pressure while you were pregnant? My
trouble started about 6 months after my
first son was born. Just pain though, no
hematuria.
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shazam
New User, Becoming EHEALTHy
Joined: 14 Jun 2007
Posts: 7
Location: FL
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Posted: 06-21-07 14:53pm
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no everthing was totally normal with the
pregnancy -- except the hematuria and pain
(which at the time they thought was a
kidney stone) - did you already have a
preexisting condition before you got
pregnant? (also this was second pregnancy
with nothing happening during the first
one) my doctors don't know enough about
the condition and told me not to get
pregnant again...which i would be too
scared to, but still i would like a more
definitive answer rather than just dont do
it because we "aren't sure"
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aflsh
Moderator
Joined: 26 May 2007
Posts: 541
Location: Souris, MB Canada
Thanks: 29
Thanked:19
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Posted: 06-22-07 10:22am
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No, but I developed gestational diabetes
while I was pregnant and went on Insulin.
Like I said, 6 months later I was in pain.
I had surgery but it didn't work. I lost
the function in one kidney. I'm still
looking for doctors who can figure it out.
They can't give me answers either. I
guess we just keep trying. 
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