i responded to the group not just you. have a nice day. i thought my post was
clear but i guess some of you didnt get it. oh well.

cari minsky <carester2002@...> wrote: Please do not tell me that
someone could not die from a shunt malfunction. I have known a few people who
did. I'm sorry to hear that you were diagnosed with kidney failure. I accept you
for who you are I just don't appreciate you making fun of my concern of the news
that "your shunt could stop working" if you would have said that you might not
need your shunt anymore that i could understand but that's not how you wrote it.
good luck with your kidney problems. If you don't mind i would appreciate you
not responding to my posts if you don't mind since you say you have more
important things to think about than making yourself clear so as to not
offending someone.This is a support group we shouldn't be making fun of one
another or be made to feel stupid which is exactly how you've made me feel. So
if you could please refrain from writing to me anyone and I would greatly
appreciate it.Thanks,
Cari

tony m <soxfaninri@...> wrote: i never intended to make fun of you. i
guess i will never be accepted by some of the posters here due to my past posts
that some of you found distasteful. for this, i have no apology becasue nothing
i have ever posted was intended to be anything bad. the reason for the ''lol''
was just my surprise that you would even get that i meant anything about dying
from the post. hopefully , we can now move on to important things. i was
recently diagnosed with kdiney failure and i have only one. thats something you
CAN die from . i have more important things on my mind that trying to make
myself clear so others wont be offended.

cari minsky <carester2002@...> wrote: okay wow you're a little rude...i
dont understand why my concerns are funny. i have known people who have died of
shunt malfunctions so i think its perfectly natural for me to be concerned but
thanks for making fun of me tony i really appreciate your sensativity.

tony m <soxfaninri@...> wrote: we wont die lol. relax. my doctor told me
that someday, there may come a time that he will find that my shunt stopped
working and i may never have symtoms. all this means is that the shunt isnt
needed anymore. if that were to happen, he tells me there is no reason to remove
it either. in other words , some of us might be walking around with a shunt
thats not workiong any longer and its not needed anyway.

cari minsky <carester2002@...> wrote: I've never heard that. What do you
mean it stops working? You mean that they won't be able to replace it because it
no longer drains fluid or just that it will stop working and there will be no
symptoms so we'll die? this is news to me but i'm interested in knowing what you
all have heard. ~Cari

Chris <christine1970_2000@...> wrote: Yep I have been told that matter of
fact I don't think I use my shunt to this day. I have two. one when I was 7 days
old and then a new one was place on the other side when I was 18 or so. I am now
37 and have not had problems (knock on wood) since I was 20.

Christine

tony m <soxfaninri@...> wrote:
has anyone ever been told that thier shunt may stop working someday and there
will be no way to know when it happens? my neuro said that there may come a day
that my shunt stops and its possible i wont even know because i wotn show any
side effects and they wont even remove it even if it stops. im 43 have a vp
shunt and its my 3rd.

momto21990 <momto21990@...> wrote: It has been some time since I have been
here to post anything! So, I
will refresh memories as to who I am and about my son!

My name is Jacqui and I am a mom to boy/girl twins that are now 18ys
old! My son Brett was born with SB & Hydrocephalus, he has been
through over 100surgeries most of them being for his shunt.

Brett has been doing very well in school and is currently a junior in
high school. He has a job at Walmart as a sales associate in the Toy
Dept. He absolutely loves his job!

But........The reason for my coming back here. Brett has been
battling severe headaches and back pain. So far it looks as if his
shunt is working (whether it is the right shunt for him still remains
to be seen) and he recently had a full body MRI and that appears to
be unchanged. We met with the Orthopedic Surgeon this morning and
his scoliosis has increased from 32 to 43 in 6mths. The dr says that
the scoliosis doesn't cause actual pain, so doing a spinal fusion
just on the basis of pain complaints is something that he wouldn't
recommend. We aren't asking for surgery, just anything to help
alleviate the pain. He has already tried a back brace and that
hasn't helped, so the dr prescribed a new type of one today (brett
will get it on Wed next week), still unsure if this will even help.
The dr has asked for our help in this situation. He asked for us to
check out support groups and chat rooms for assistance.

Has anyone ever gone through a spinal fusion just on the basis of
having pain? If so, did the fusion help alleviate the pain? Or has
anyone gone through chronic back pain and found something that
works?

Brett has been through the pain clinic at CHW for both his headaches
and his back pain with no results.

If anyone has any information or suggestions, could you please email
me directly at momto21990@...

Thanks for your help!

Jacqui

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