I would think that they should change the pump or remove one of her shunts. They both say they think its draining too much but just not doing anything....
After her CT yesterday showing 4 collapsed ventricles I would think they would do something before she has a bleed. Unless they are just waiting on a bleed to occur. They seem like they don't get in much of a hurry to do any surgeries anymore. I just don't know what to do or where to go.
If the sunt is ovedraining what would the recomendation be remove or not to remove?
Wow Karen my daughter has had a shunt for the past 19 years. She just had a new shunt placed 3 weeks ago, in which they placed a second shunt and she is having the same problem in the mornings as soon as she gets up. She is also having dizziness as well. She is also having headaches, nausea and vomiting as well but not all the time its comes and goes. Even during times she has some episodes she can't see.
The neurologist and neurosurgeons are thinking it is draining too much fluid. But I was just told today that all we can do is keep a log of when it occurs and what position she is in (sitting, lying, standing) and how long in that position when it starts. By keeping the log they can determine if that is the case. She did tell me that changing position to a upright position is a sign of overdrainage. The neurologist told me that there is no test that can detect overdrainage though. My daughter has had a shunt tap done almost 2 weeks ago and the CSF pressure would not even register. I would think that would be enough to tell them something on top of her other symptoms.
Unfortunately the NS did not put in a programmable shunt where the pump can be adjusted. So they just want to wait it out....I guess so we can all suffer longer.
Has anyone checked you for a orthostatic blood pressure? (lying, immediately sitting up, immediately standing) A positive orthostatic BP will drop from just changing positions. My daughter has a positive orthostatic.
As far as your heart rate increasing....wow very interesting...after my daughters surgery she was tachycardic at a rate of 106-110 sleeping, and 120 up to 174 when up. I know this happened because her enlarged ventricles were drained completely in less than 24 hours after surgery...which drained them way too fast. So I would definetly say it is probably linked. Please keep me posted on what you find out. We are about ready to get a second opinion soon if we don't get some solutions soon.
Hang in there!
Mel
Hello.
I am sorry if someone could not spot your post earlier.
The commonest symptom of over drainage and low CSF pressure would be headache. What you experience in the morning is probably not related to the shunt functions. You will have to find out if you get a refreshing sleep, if there are factors preventing you from sleeping for adequate hours, etc.
The heart rate increases if there is a low CSF pressure (over drainage), in an attempt to increase the blood flow to the brain and increase CSF secretion.
Regards