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  |
Hi jacban62!
Your daughter is not alone! I am now 25 and was only diagnosed with hydrocephalus and had my shunt placed when I was 23. I've learned that having a shunt at this age is very rare, but shunt placements seem most successful in our case.
I've never had issues with my cell phone (not so far at least), but when it's cold, my shunt definitely hurts! I usually just take OTC pain killers like advil to get rid of it. I do take OTC pain killers to deal with different shunt symptoms on a pretty regular basis. Dull headaches, pain around the shunt itself, and most often, pain in my abdomin from the catheter. This seems to be the biggest problem. I am a very active person and hate that working out, doing yoga, running, etc seems to aggravate the catheter. Sometimes the pain wakes me up at night. My surgeon said he could do a revision of just the placement of the catheter in my abdomin, but my shunt has been functioning well for two years and I am not sure if it is the right decision to mess with it. Don't fix it if it ain't broke, right? Any thoughts on this? It's horrible to hear all of these complaints about bad doctors. My doctors in NY are the best. I am so lucky to have them on my side. They always address any complaint I have had so far and I've been so happy to have doctors who I trust. Hang in there! And just know that there are other young adults out there with newly placed shunts!
