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Constant headaches and dizziness

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Unread 07-14-2011, 03:39 PM   #1
FutureMrsBieber
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Angry Constant headaches and dizziness

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?
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Unread 07-15-2011, 01:35 AM   #2
hydrotexan26
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Originally Posted by FutureMrsBieber View Post
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.
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Unread 07-15-2011, 09:45 AM   #3
FutureMrsBieber
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Originally Posted by hydrotexan26 View Post
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.
You're so lucky that your neurosurgeon actually listened to you, I get nauseous and my neck is sore too and the headaches are just getting worse thanks fir the reply though maybe when I see my neurosurgeon again I can ask her about getting a programmable shunt
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Unread 08-31-2011, 10:31 PM   #4
FutureMrsBieber
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Hi, I just wanted to let you know that on august 3rd I had a programmable shunt valve put in. I still have all the same symptoms though, so I'm very confused! :|
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Unread 08-31-2011, 11:08 PM   #5
hydrotexan26
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Originally Posted by FutureMrsBieber View Post
Hi, I just wanted to let you know that on august 3rd I had a programmable shunt valve put in. I still have all the same symptoms though, so I'm very confused! :|

My NS sent me to a Neurologist after my programmable shunt has been re set twice since surgery. Just went today and he is running an array of tests. Maybe they'll all come back clear and they will realize it is my shunt! I keep having headaches. I'm wondering if maybe my body is not responding to the programmable like it did the fixed valve? I have been unable to work due to these headaches. Are you having any other symptoms since the surgery besides the headaches? I'm still having some dizziness and recently problems sleeping. I'm so sorry to hear that you are still having problems. I just have to be annoying and keep calling them. It's crazy!
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Unread 09-01-2011, 08:42 AM   #6
FutureMrsBieber
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Originally Posted by hydrotexan26 View Post
My NS sent me to a Neurologist after my programmable shunt has been re set twice since surgery. Just went today and he is running an array of tests. Maybe they'll all come back clear and they will realize it is my shunt! I keep having headaches. I'm wondering if maybe my body is not responding to the programmable like it did the fixed valve? I have been unable to work due to these headaches. Are you having any other symptoms since the surgery besides the headaches? I'm still having some dizziness and recently problems sleeping. I'm so sorry to hear that you are still having problems. I just have to be annoying and keep calling them. It's crazy!
I'm going to see my neurologist on the 15th, I dont really see the point though, since they've tried a couple meds already and I was allergic to one so
I'm not taking anything right now. That's not good, I can't read without being in alot of pain so I don't know how school starting next week is going to go. When they first put in my programmable valve, and the icp monitor, I couldn't even lay flat or sit because my head would get extremely sore from the pressure change I guess, because I could see the pressure going from normal to -30 when I'd lay flat and in the + teens when I'd sit up, I'm set at 7 now though. Yeah, im still dizzy all the time, I've got a horrible memory now and the back of my head where my old shunt used to be but also a whole band along it is numb now :$ I haven't even talked to my neurosurgeon since the middle of July! I need to try to convince my mom to do something because I can't handle this pain anymore
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Unread 09-01-2011, 08:54 AM   #7
FutureMrsBieber
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Quote:
Originally Posted by hydrotexan26 View Post
My NS sent me to a Neurologist after my programmable shunt has been re set twice since surgery. Just went today and he is running an array of tests. Maybe they'll all come back clear and they will realize it is my shunt! I keep having headaches. I'm wondering if maybe my body is not responding to the programmable like it did the fixed valve? I have been unable to work due to these headaches. Are you having any other symptoms since the surgery besides the headaches? I'm still having some dizziness and recently problems sleeping. I'm so sorry to hear that you are still having problems. I just have to be annoying and keep calling them. It's crazy!
I also forgot to say that I have really bad abdominal and neck pain :/ I've also felt nauseous when I've gone to bed and woke up the last few days :|
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