Quote:
Originally Posted by FutureMrsBieber
I've had 16 surgeries related to my shunts, I was born with hydrocephalus. In march I had my appendix taken out because i had abdominal pain, after they removed it and I had come back 3 weeks later with headaches they told me I didn't have an appendicitis and that it was actually a shunt infection. Before they realized this though, they put an icp monitor in to measure the pressure in my brain and that same day my neurosurgeon got the call from the lab that tested my csf from a shuntogram I just had, who said I had an infection, so 2 days later they took my shunts out and put in EVD's which I had for 12 days while the infection was treated with penicillin. During my first year I had one shunt that constantly malfunctioned so I spent most of it in hospital, just before my first birthday my neurosurgeon decided to put a second shunt in, I had no issues until I was 9 when they lengthened my shunt tubing, and then I was fine until last November when my shunt tubing came disconnected in my neck, I went from august to november not knowing about it until I saw my neurosurgeon on the 18th to discuss my ct from october 4th. My neurosurgeon did the surgery to replace my shunt on November 29th and my headaches were gone from then to march and ive had them since. So as I was saying before, I've had 2 shunts since before my first birthday, when they put the EVD's in, the ventricle on the left side never drained the whole time so my neurosurgeon thought that maybe this meant both ventricle were finally corresponding and when the infection was gone she decided to put only one shunt back in, I've suffered even worse headaches since. I'm really getting sick of my headaches and I know there's something wrong with me, I get dizzy when I sit or stand or even walk too fast. Lay Thursday I came to see my neurosurgeon and get a ct and shuntogram done, they both showed nothing was wrong and my shunt is working fine. This Tuesday (July 12th) I just couldn't take the headaches anymore so I had my mom take me to emerg where they did a ct and shuntogram once again that were basically unchanged from last Thursday, I was admitted so they could do an MRI and get me to see a neurologist sooner, they clearly think I just have chronic headaches, I think it's because I need the second shunt. my neurosurgeon is on vacation this week and she didnt think it had anything to do with my shunt but the neurosurgeon taking over for her this week didn't even want to consider it and didn't listen to me it my mom at all, she also believed I just have chronic headaches even though the headaches started after my neurosurgeon only put one shunt back in  I don't know what to do, please help me? |
I'm so sorry you're having to deal with this! I just went through the same type of ordeal. Since the first part of June I started having horrible headches, dizziness, nausea, and later problems with short term memory, neck pain, etc..I went to ER twice before getting in to see my neurosurgeon and they told me the ventricles were slightly dilated. The NS said they were like 3x dilated what they were in January and ordered a shuntogram and said he was going to most likely do surgery to replace shunt after that test. Well there was a mix up between the dr's office and hospital that was to do the shuntogram and they could not get me in until the next week. Ok, not normally a biggie but the dr was going on vacation for 2 weeks! Over that period of time my symptoms kept getting worse. I finally got int to see the dr July 1 after being in pain for a month and unable to work. He explained that my shunt was working but b/c of the buildup in my ventricles it was not working to its full capacity. He explained that I had a fixed pressure valve that was not maintaining the change in pressure. So, he finally replaced it last Thursday (July 7) with a programmable shunt valve. Supposedly he can change pressure settings in his office without having to go in and replace shunt. He just did the valve part, left the tubing since it was still working. I'm feeling so much better this week, with the exception of some weakness and tiredness. I hope you can get some answers! I totally know what you are going through. I called and my mom called the dr's office trying to get in sooner. I even asked if I could see one of my dr's colleages but they said "They do not share dr's." Really??!! Anyway, it's behind me now but I hope you get some relief soon.