Anyone heard of this?

[Guest guest]

I had my annual CT scan and the ngs. said that everything looks wonderful. He

said that my VP shunt may be overdraining but not all the time so for me to

drink lots of water (I drink at least 8 glasses everyday already) and to up my

caffeine intake. This just does not make sense to me.

I have headaches all the time. More severe when bending, lifting, any

exercise. When they get really bad I will lay down in bed for a couple of hours

and they go away. But when I get up they gradually come back. I cannot spend

my day laying on my back.

I have a Arnold-Chiari with hydrocephalus. I have a VP shunt that was last

revised in 1992. I have had two decompressions one in 1991 and one in 2000.

And advice, information, or concerns?

Thank you all,

Debi

[Guest guest]

I'm sorry I'm so late but could  replies go on the list. This is so me and I am

desperate for help.

God bless,

Carol in Las Vegas

----- Forwarded Message -----

To:

Sent: Sunday, October 23, 2011 6:07 AM

Subject: Anyone heard of this?

 

I had my annual CT scan and the ngs. said that everything looks wonderful. He

said that my VP shunt may be overdraining but not all the time so for me to

drink lots of water (I drink at least 8 glasses everyday already) and to up my

caffeine intake. This just does not make sense to me.

I have headaches all the time. More severe when bending, lifting, any exercise.

When they get really bad I will lay down in bed for a couple of hours and they

go away. But when I get up they gradually come back. I cannot spend my day

laying on my back.

I have a Arnold-Chiari with hydrocephalus. I have a VP shunt that was last

revised in 1992. I have had two decompressions one in 1991 and one in 2000.

And advice, information, or concerns?

Thank you all,

Debi

[Guest guest]

Dear Carol,

I think the headaches are caused by your shunt over draining. I had a shunt for

a year and a half, but could only be upright for a couple of hours, at most,

before I'd be driven back to bed. After lying down for five minutes or so, the

headache would either be gone, or greatly diminished. I kept going to the neuro,

who said all my images looked good, and that there wasn't anything he could do

for me. My diagnosis was hydrocephalus, too. I finally begged him to disable the

shunt to see what would happen.

Well, guess what? I didn't need the shunt!

I stayed in the hospital for a week of observation with my disabled shunt. The

belly part of the shunt was externalized and hooked up to a baggy and a valve if

I needed it. I never did need to hit the valve!

At the end of the week, I underwent another surgery to have the shunt ligated

and cut off at the collar bone area. The head part of the shunt I still have,

because I wanted to keep it " just in case " . I waited several months to see if

symptoms would return, but they never did. I'm getting the rest of the shunt out

in November. I still suffer with head and neck pain, forgetfulness, hearing

problems, back pain, leg pain, dizziness, blah blah, but I'm doing a heck of

alot better than I was with that wretched, hateful, horrible shunt!

I'm not sure you are going to be quite as lucky as me, (we can only hope) but I

think it's an option worth exploring.

I have to admit it wasn't easy to convince my neuro to do this, but what tipped

things my way was when he said to me, " You could die without it. " I responded

that it was " starting to look like a good alternative! " I couldn't stay in bed

anymore!

 If you can get your neuro to adjust the shunt down, I know you'll do better! I

know your pain.

As additional arguing points, tell him that depression is setting in, you're

undoubtedly getting weak from laying around all the time, and if you're like me,

you're getting fat from the deadly combination of inactivity and stress/boredom

eating.

I wish you well, I really do. Please talk to your doctor about getting something

done with that shunt of yours! The way you're living needs to be better, and can

be!

..Best Wishes,

[Guest guest]

I have a shunt too, I had some headaches too, in the morning when I stood

up, just in my right side of my head, terrible, nothing worked, I was

feeling very tired, I also have some cramps in my legs some days, so my NL

told me that perhaps I need some potassium as with the valve I was loosing a

lot of it, and yes I feel perfect since I take potassium every night, many

things were corrected by this!!! My NL says that with the valve we are

loosing a lot of electrolytes and they should be replaced, I started taking

Gatorade but this did not worked. So I started to take just potassium!! And

it worked I am not so tired, I do not have cramps, I do not have headaches!!

I take an envelope with half a glass of water. We did the test with out

having any blood or urine analysis as my Doctor say it would be very

difficult to prove that I have a lower potassium problem in the CSF as they

should made the test directly, so he say that if I take potassium with water

and if I do not need it nothing will happened as at it will not be absorbed,

but If I get it directly into the blood then I will have problems. So I took

the potassium in water to make the test, and it changed my life!!! Really.

Everybody with a valve should try it. , Mexico.

Reply-To: Rukavena

Date: Fri, 28 Oct 2011 21:43:23 -0700 (PDT)

To: " "

< >

Subject: Re: Fw: Anyone heard of this?

Dear Carol,

I think the headaches are caused by your shunt over draining. I had a shunt

for a year and a half, but could only be upright for a couple of hours, at

most, before I'd be driven back to bed. After lying down for five minutes or

so, the headache would either be gone, or greatly diminished. I kept going

to the neuro, who said all my images looked good, and that there wasn't

anything he could do for me. My diagnosis was hydrocephalus, too. I finally

begged him to disable the shunt to see what would happen.

Well, guess what? I didn't need the shunt!

I stayed in the hospital for a week of observation with my disabled shunt.

The belly part of the shunt was externalized and hooked up to a baggy and a

valve if I needed it. I never did need to hit the valve!

At the end of the week, I underwent another surgery to have the shunt

ligated and cut off at the collar bone area. The head part of the shunt I

still have, because I wanted to keep it " just in case " . I waited several

months to see if symptoms would return, but they never did. I'm getting the

rest of the shunt out in November. I still suffer with head and neck pain,

forgetfulness, hearing problems, back pain, leg pain, dizziness, blah blah,

but I'm doing a heck of alot better than I was with that wretched, hateful,

horrible shunt!

I'm not sure you are going to be quite as lucky as me, (we can only

hope) but I think it's an option worth exploring.

I have to admit it wasn't easy to convince my neuro to do this, but what

tipped things my way was when he said to me, " You could die without it. " I

responded that it was " starting to look like a good alternative! " I couldn't

stay in bed anymore!

 If you can get your neuro to adjust the shunt down, I know you'll do

better! I know your pain.

As additional arguing points, tell him that depression is setting in, you're

undoubtedly getting weak from laying around all the time, and if you're like

me, you're getting fat from the deadly combination of inactivity and

stress/boredom eating.

I wish you well, I really do. Please talk to your doctor about getting

something done with that shunt of yours! The way you're living needs to be

better, and can be!

..Best Wishes,