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
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  |