TINA, EMAIL ME PERSONALLY AT ***@cox.net , I can tell you my
experience with a Spine Tethering..." its not great... maybe this will help
you below...
KymberAnn
any questions email me at ***@cox.net
I thought I'd introduce myself, my name is KymberAnn (just a nickname) I'm
from Connecticut and I have Spina Bifida as well as Hydrocelalis, where I
needed a shunt when I was born because I had water on the brain, I'm 33years
old now, and I've had Spina Bifida all my life, I recently back in 1998 only
a few years ago had back surgery for spine untethering, because scar tissue
from my surgery at birth was wrapped around my spine, making it hard from me
to sit up, well, the surgery didn't go very well, after my surgery which was
on Nov 23rd of 98, I was sent home 2 days later, only to be home a week and
unable to move or transfer, my parents had to actually lift me from room to
room, after about a week because I was unable to catherize myself my mom had
to try and do that, and couldn't because I wasn't able to lay flat on my
back because of the pain, my Urologist had been called, and was on the phone
while my mom tried to catherize me, and basically she told my mom to pack a
bag because something was wrong and I was going back to the hospital. For
the new few days I was in the regular hospital, until this really snotty
social worker came in my room, at the hospital and said , you know if you
don't tranfer into your wheelchair you can't be taken to weldon, which was a
rehab hospital near where I live, well at the time I had no idea they were
even thinking of taking me there, so I was a little pissed of at her
attitude, somehow someway I eventually was able to tranfer into my
wheelchair from the bed I was in, still extremely in pain, finally they
moved me to the rehab place which was connected to the hospital, by a few
tunnels, underground. Once I was there, I was put a few pain relieving
medications and it looked like I was gonna be going home in a day or two,
and then... well all heck broke loose, suddenlty I started to get really bad
headaches, and was vomitting from them, 24-7 everytime I would eat anything
I would throw up, the nurses there, basically arrange for me to have an
x-ray and it was determined that I had constipation, or so they thought
thats what the symtoms were, so for over a month I was given all the bowel
medication I could have, everyday every few hours, everything they had on
stock, not once did I go, and yes there was stuff in there, but none of the
stuff they were giving me worked at all..Finally around Christmas Time i was
told because I was still in the hospital that I could go home for a day, it
would have been longer but I was too ill, and that was ok, the medication I
was on seemed to help a bit, and so the night before while I was getting
ready for bed, this was Dec 24th, while the nurse was helping me, she
noticed that my bed was wet, and then she waited for a minute and discovered
I was leaking spinal fluid from my wound on my back.. the next day was
Christmas so there was no way to get a doctor in there, but I was able to
still go home.. I was told to be back by 9pm est. and I was back by 8pm when
I got back I was told my that doctor who did the surgery would be in, to
restitch me, between him and his assistant they did it for about 4 days
until it was Jan 3rd and finally decided that I had to be taken back in for
surgery... so on Jan 4th, they took me back in for surgery and opened me
back up to restitch, finally after the surgery I went back to rehab, but it
was rehab and because I had stitches in my back, I wasn't able to do any
therapy at all..that would pull on the stitches, so for the next 2 weeks I
did nothing, and then after the two weeks, I was finally able to go home.
Within 2 weeks of being home I was taken back into the hospital with what I
thought was just the flu, only to find out that I had pneumonia, So, I was
readmitted into the hospital with pneumonia for another 4 weeks, while
there, a nurse on the floor I was on,gave me to much pain medication beause
at the time I was in a lot more pain, basically screaming all the time, and
I ended up getting an overdose right before a medical proceedure, on my
back, I remember going for the Ultrasound, where they were gonna drain my
back, with a needle, and I remember trying to sign the forms and not being
able too, I remember going into the room, and thats it, the next thing I
know, my mom is there, and she was telling me they gave me an overdose of
medication. After about 4 weeks I was finally able to home. I was then in
and out for the next few more weeks with spike pain problems, which would
make me throw up from the pain because of a previous surgery I had when I
was younger to make my stomach smaller to enlarge my bladder with a piece of
it, and then in Oct 99 one morning I woke up with a really bad headache, I
wasn't able to move, and the Ambulance people had to give me pain medication
to get me into my wheelchair and down the hallway. Once I got to hospital we
found out that I had meningitis, but thankfully it was the kind they could
curse, so for the next 6 weeks I was at another hospital this time, it was
finally decided that what was making me sick was my shunt in my head since
birth, so I was told they would have to remove it, now, we had no idea if it
was working or not, and it was very emotional before that, because I didn't
know if removing it or not, would kill me or not. Thankfully after the
surgery I woke up, and after the 6 weeks I was finally bale to go home.
Ever since then I still have back pain problems, I find that ordinanary
Sinus Tabs off the counter at the Pharmacy make me feel better in my back,
but not becaue of the Tylenol thats in them, its because of the Sinus
medication, we have yet to figure out why all this time I have pain, of what
it from because they've done the MRI's the head shrink thing, and I've seen
quite a bit of doctors during all of this time, and still continue too
hoping that maybe someone will find something, but I think after all this it
really because my shunt is no longer in my head, and that its causing extra
fluid, which is giving me the pain. Which stinks because I have no plans on
having one put back in after all that.. and another thing after all this,
I've lost most of the mobility that I once had, prior to my surgery I'm not
as able to tranfer or do the things I used too as before, before I would
wheel myself all over my town, and go to the mall or shopping or for coffee
or out to lunch..etc... now I can do none of that. And at this point I
wonder if I can even live on my own, as like before I could have . all I can
say is good luck, if you need any advice or help let me know... OOK?
kymberAnn from Connecticut (you can email me here"
***@cox.net " if you need any help with anything... Good
Luck... KymberAnn
"~Tina~" <***@gmail.com> wrote in message news:f5GSe.308244$***@attbi_s72...
Hello,
I was wondering if any other parent or person here can tell me anything
about tethered spinal cord? My oldest son had his 1st release in December
'99 and so far has not had to have another one. He complains allot with back
and head aches. recently he started complaining about his legs hurting. His
peditrician dismissed it as growing pians? Any help would be much
appreciated...
--
Tina
~*~*~*~*~*~*~*~*~*~*~*~
We are meant to feel.
Part of our recovery means learning
to go with what we're feeling and
what our feelings are trying to tell us.
~Melody Beattie~
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I can only please one person a day
&
Today is not you're day
&
tomorrow don't look much better either.
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