Quote:
Originally Posted by jacban62
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  |
If your daughter's shunt is programmable/"Medos or Codmen" VP shunt and there is some type of magnet to the phone she is using it will change the pressure the shunt is set at, which can give her bad pressure headaches. A CAT scan doesn't show if the shunt is working or not. If done of the head it's going to show placement of the shunt and status of the cyst or fluid. However she would need a shunt injection where they place dye in the shunt and do x-ray's as it flows from the valve into the peritoneal to know if the shunts blocked or flowing properly.
I have a shunt myself and weather seems to have an effect on it at times. Headaches generally pressure headaches that can even be felt behind the eyes & cause blurred vision are common in my case. I read somewhere that the barometer has some kind of effect on I believe the flow of the spinal fluid.
I wish you and your daughter the best, and hope for better days