New to the site. I have a question. My daughter, 21, was determined to have hydrocephalus 15months ago and received a VP SHunt. It has been a reasonably good experience for her overall but several small things have come up and Neurosurgeons office doesn't seem to be a good resource for getting answers....my guess is they don't see a lot of people her age.

1) ongoing faint/blackout type seizure activity continues upon rising but my daughter is able to control it by breathing. This was an original factor in determining she needed a CTSCAN and then MRI to find the hydrocephalus.

CT SCANS all prove to indicate that the shunt is working fine and no answer seems to be available regarding the faint/blackout type seizure activity and doesn't seem to worry any of the DR's other than GenPrac Dr, who referred her back to Neuro Dr.

2) living it Florida, really cold weather is rare. Last week it was cold and she is working outdoors and found to have horrible headaches last week. She is not sick with a cold nor did she have cold symptoms, just a horrible headache that made it very difficult to manage.

Daughter called to make appt to see the Neuro DR and was intercepted by his asst and was told that she did not need to see DR for annual followup or any other reason unless she has an ongoing problem that had not been previously addressed. She just thought she should see him to answer some of these questions but they don't appear to want to see her.

3) Daughter has a blackberry cell phone and has had to have it replaced 5 times in the last year due to phone problems that affect the ability to hear her or for her to hear others. She is a college student living away from home and the phone gives her a lot of problems. I have the same phone and no problems so just curious if cell phone might be affected by the magnets in the VPShunt device.

asked the cell phone provider and they have no clue.

Any help or input her would be appreciated. My daughter is very grateful that she has not had any major issues and her body has accepted this VP Shunt without any real problems, but would love to hear input regarding the above mentioned issues and other people's experiences.

Thanks,

concerned MOM

Hey, I think I can give you some answers. I live in Northern Ontario, Canada. Weather up here is often very cold. I, too, have been told no revision to my VP shunt is possible. I'm 53 years old, my shunt was put in at age 41. I suffer from daily headaches and mild seizures. The doctors used to give me narcotic pain relievers, but those were eventually replaced with over-the-counter headache medication. I got hooked on the narcotics and suffered through four weeks of withdrawal. Anyway, to get back to your questions, both headaches and seizures are not uncommon for people with VP shunts. And your doctor is probably telling you the right thing when he says there's not much he can do about it. I have tried several anti-seizure drugs, (Dilantin, Tegretol, etc) but the side effects were worse than the seizures. I now use four .5 mg. tablets of prescription Clonazapam daily to control the seizures and over the counter acetaminophen for the headaches. I asked about a revision to my VP shunt, but two different neurosurgeons have told me the risks involved with such revisions would outweigh the benefits. As for the phone problems, that's one thing I can say I've never had. Mind you, I don't have cell phones, but use cordless and regular phones without problems. Similiar to your daughter, I have had numerous CT scans and MRIs to check the shunt and the drs. say nothing can be done. I'm having some stomach troubles now and doctors are now investigating whether there may be a problem at the bottom (distal) end of the shunt. At any rate, I'm not expecting to get any more help. I'm just continuing to learn to live with what I have. Hope this helps.
Jeff, Kirkland Lake, Ont. Canada

Hi,
I too have a VP shunt and get blackening out when i arise, lately its been getting worse.

In september, my opthamologist found that i had papilledema behind my right eye, which indicated intercranial pressure.
CT scans were exactly the same as they had always been, and they didnt suggest any problems with my shunt.
I had an icp monitor fitted 2 days later and then that night I showed very bad symptoms of shunt malfunction.
Vomitting constantly for hours.
Irritatability
A very nasty headache
Sore eyes
...I soon went into a comatose state, where i could not respond to anything...i was rushed down for an emergency CT scan. Still nothing at all showed up.
I was taken into an emergency shunt revision very shortly after where a nurse whitnessed the fluid fly across the theatre due to such high pressure.

12 years ago, exactly the same thing happened, Scans and tests showed up with no abnormalities until my shunt malfunctioned and put me in such a bad state, revision was adament.

I suggest you ask your NS about the possibility of having an ICP monitor inserted for a few days to measure the pressure in the head, this gives an accurate reading. =)

good luck to you and your daughter x

Hello,
I am sooo sorry to hear that your daughter is going through all this..WOW! I myself has a shunt. It has been ONLY 6 months that I have had this and my pressure problem is all good now but I have had MAJOR abdominal pain on and off since surgery- reading on here I have come across alot of people that has the SAME pain that I was having. But now MY problem is REALLY REALLY BAD CONSTANT HEADACHES. its going on the 6th day of this I first started getting the headaches in the beginning of February I had a little bit of neck pain with it and a temp of 101. I ended up in the hospital for 5 days- them thinking that I had an infection-but ThankGod no. nothing ended up growing in my blood cultures and my temp with headaches went away- I was great for a week(the best actually I EVER felt since surgery) then I woke up one day last week and the same thing happened-temp with kinda slight neck pain and HORRIBLE headaches-it has NOT yet gone away and I have even went back to the hospital where at the time (of course) I didnt show any temp. they sent me home- I still do not have a temp but the headaches are still here...I just dont get it-I thought getting this surgery would of made me better? I am on here today to read other peoples shunt stories to see if anyone else has had headaches with theirs. thats when I came across yours- Thats a very odd story about the cell phone- I would go with a different kind of brand of phone to see if anything changes? As for it being cold- I live in OHIO and its cold here now...but I did realize something...the first time I got this headache I washed my hair and did not blow dry it that day and I got the headache- the second time , I slept with a fan blowing on me and I got the headache- I am sorry I do not have an answer for you but maybe the cold has a little to do with it? but according to my brain surgen; there were to be NO problems and NO limitations with a shunt...so I have no idea- I pray that she gets better and you get the help you need cause right now I am in the same boat and its soooooooooo Horrible Please let me know what else you hear- etc. take care-M

Your situation is similar to my daughters.....this last revision which was only evident due to the pappiladema has effected her vision dramatically. Did you have any vision problems and if so did it get better with time? It's only been a month but I don't know how long to wait....

I find that people are really ignorant about my operation.I had a shunt revision a couple of months ago and get asked really ridiculous questions ie could I not have drained it myself?

I had to have a vp shunt due to hydrocephalus caused by Chiari I malformation. I have had 8 shunt surgeries since it was 1st placed in 11/2010.
I was diagnosed with Chiari I malformation after a MRI showed the condition. Also diagnosed with Arnold's Chiari which means that my spinal fluid was not leaving my head. I was 48 years old when diagnosed after having headaches and eventually passing out when ever I coughed, sneezed, gagged, or vomited. The shunt did relieve the pressure in my head but did not help with the pain when sneezing, coughing, etc. I had Chiari Decompression surgery in 2/2011 and that corrected the above problems noted. Chiari is hard to diagnose even with a MRI. After being told originally by a neurologist that my problem was a pinched nerve and later after I started passing out that it was not neurological I returned to my Family Physician and HE listened to me! He ordered another MRI and the radiologist diagnosed Chiari I malformation. I was then referred to another neurosurgeon that verified the Chiari and immediately inserted the VP shunt. The 7 shunt surgeries included the insertion, revisions, and 19 days in hospital with infection in my brain due to the tube in by abdomen becoming coiled and not allowing the fluid to flow. After all this and still having Chiari symptons, I decided to have the Chiari Decompression (8th surgery) and I am doing alot better. Just praying the shunt does not malfunction in any way.

Sorry, 8 shunt surgeries and the Chiari Decompression was the 9th surgery from 11/2010 to 2/2011

Despite all of the "unanswered questions" from my Neuro as well I can offer you this I too experienced the weather discomforts (Northern PA - winter lake effect snow) storms definately bring on headaches pre and post shunt. Getting up too quickly does the same I have read that it is a syphoning effect even with the pressure valve shunts. I have been able to reduce it by sleeping with the head of the bed slightly elevated and getting up a little at a time, Sitting up slowly. Neuro's office discounts most experiences as me being a fruit loop! Here's to fruit

okay here I go again......correct dates 11/2009 to 2/2011. Think I got it right that time....even if it matters.